Transverse Myelitis "my story"

[@rohantiwari2517]

I m facing with transverse myelitis I'm walk independent but weakness in fungers

[@megoins73]

When did you get diagnosed.? You able to walk on your own power or aided? I wish you the best of luck

[@rohantiwari2517]

@@megoins73 I walk independent but weakness in fingers

[@sanyamehta6992]

@@rohantiwari2517 can you email me your number?

[@BlazingSerenade]

hey man! Thanks for the story. I was diagnosed with TM back in January 2016 and was bed-ridden for two weeks while they checked out other diseases. I was given steroid IV drip for five days and I made a miraculous recovery. I was walking by the end of january. My episode started in my toes in the morning and ended up towards my knees by the end of the day. I felt like I was walking in mud. It's really scary. Thanks for sharing your story!

[@megoins73]

Thankyou,! Glad you made a full recovery!!! Apparently we are a rare group. I'm still hoping the hands get back to normal. But I will wait patiently and hope for the best. Stay healthy my friend!!! Thankyou for watching....!

[@Anonymous-rn2vk]

Hi Melvin. Thank you so much for this video. I normally never comment on KZbin, but this is the one time that I've decided to write something here. I was diagnosed with TM and spent the last month in hospital enduring some of the biggest hurdles I have ever had to cross in my life. Like you, I had scores of scans and a lumbar puncture, was given days intravenous steroids, then rounds upon rounds of plasmapheresis; I was then also given IVIG. The onset of my symptoms was a lot faster than yours, though. The sudden incapacity to move or walk overnight was truly horrifying, but now after a month and a half I've slowly gained back my ability to walk and touch, albeit not completely. I'm making a steady recovery and hope to be back to the way I was really soon. Again, I just want to thank you for sharing this video with the world and tell you how much it really resonated with me.

[@megoins73]

I absolutely appreciate you taking the time to watch and even tell me your story. I shot this video and didnt upload it for a week or so. I hadn't seen many videos of people experience where they were Ble to recover as well as I fortunately have been able to. So it was important for me to tell people not to wait and there can be a very positive outcome if you never give up and get good treatment. I'm not thr kind of person that puts myself out there like that. But I had to this time. For anyone out there who lost hope. I felt very alone in this since I never even heard of it before. Your story sound like so many others I've heard. And it sounds like your doctor is treating you the way that seems to work faster. Others I've talked to were given steroids and sent home sadly. I wish you for the speediest recovery. Do all you can and everything the doctors ask of you. And never be afraid to bombard them with questions after questions. Force them to answer you. I had two neurological doctors that didnt agree on the the plasma treatment after my first round. My first doctor went off the 4 days. The 2nd one tried to end my treatment. I was like hell no. This is helping and we are going to finish this.!!! Please keep in touch on your progress my new friend. I really want to know. We have to stick together because no one knows how this feels. Keep working hard and stay in touch. Again I appreciate your time and comments so much. You will be back on your feet... make it no other option.. Keep moving forward.!!!!

[@michelleaugust18]

Bob Jordan ty for sharing this. I know how you feel to be paralyzed so quickly bc that’s how it happened to me! I’m still paralyzed but have faith! I see my neurologist I’m 2 wks to see what we are doing next. I may do water therapy next to try to walk.

[@Anonymous-rn2vk]

@@megoins73 Thank you so much for your words of encouragement. Now over a year later, I feel incredibly lucky and grateful to have recovered nearly all my motor capacity and most of my sensory capacity. It was a harrowing journey from complete paralysis to now being able to walk (and even run a little), but it's something that has without doubt made me a stronger and more resilient person. I'm filled with gratitude for all the doctors, nurses, physiotherapists, and medical staff that made my recovery possible, and I really want to thank you again for putting your voice out here on KZbin for everyone because it really does provide us with hope from a real success story. To everyone currently diagnosed with TM, I stand by you in your recovery and hope that you will be back on your feet in no time. You will overcome this.

[@Anonymous-rn2vk]

@@michelleaugust18 How are you doing now?

[@megoins73]

@@Anonymous-rn2vk i just woke up at 5am because I couldn't sleep!!! And this is the exciting news I read. Im so happy for you. Im so glad that your strength and determination paid off. And I appreciate you so much for taking the time to let me know. I often have gone through my old comments from people and reached out. Sadly most hasn't been great news. And many understandably didnt respond. I started to feel like my reaching out wasn't helping in some cases. So to read this is very refreshing for sure.!!!! You're right this does make you stronger and more resilient. You will find that things that use to frustrate you bounce right off of you now. The things that some and even us, takes for granted is mind blowing. I find myself being more kind to strangers. Not that I wasn't before. But taking more time out of my life to just be in that moment when an akward conversation in public with someone you don't know happens. I just take my time and listen. Ive had some interactions with people that I feel in the past I would have had mental eye roles in my head. I dont feel I do that. So you'll see, if you haven't already, some tiny things in your perspectives will change and its very pleasant and a good feeling. So once again. Im so happy for you. I do not know you in the real world of course, but were are connected none the less. Please keep at it who knows what success in your recovery the next year holds!!! Because there are still possibilities. The first year rule didn't apply so much to me. I still gained some things completely back after that. Lol. So don't always believe the "experts" lol. And also thankyou so much for thinking of me for the update. Good uplifting news is what I needed on this sleepless night. So cheers to your recovery I cant wait to hear what you do next!!!!!

[@kathyw605]

you made this video for me! thank you! My husband is waiting for a second MRI because they think he has this condition but his appointment is in 2 weeks. I am trying to get him seen sooner so he can treat sooner. You've calmed me down a bit- hearing that recovery, to some degree, is possible. He has the tingling/numbness sensation in his hand's, arms &shoulders, not necessarily in his feet. He's still able to walk, just slight weakness in one leg, Glad to hear you are doing better. Hopefully, you reach full recovery.

[@megoins73]

How long did he wait to get checked out? It's very weird to describe when it starts because you think it will just go away. I've met another person that was diagnosed with TM recently. So it's nice to be able to chat with someone. Its awkward because you look fine to others. They ask you how it feels and then you hVe ti decribe all the things you can think of that they will get. Lol I just says its weird. Lol. I do hope you're husband recovers. Glad he didnt have to stay on the hospital long. Please let me know what the find if you dont mind. Take cre and thankyou for watching!!!

[@kathyw605]

@Melvin, he thought he had a pinched nerve, so suffered w/it for a few days, b4 his 1st appt. with all the red tape, referrals we are still waiting on final diagnosis. 2nd MRI set for next Tues. We should know by thurs.will update you.

[@megoins73]

@@kathyw605for me I though the exact same thing. It took me a couple weeks to get into the right hospital. The first one sent me home. These er doctors know very little about neuro stuff.. they said that's why it's called Neuro science.!!! Lol

[@megoins73]

@@kathyw605 any new news?

[@kathyw605]

@@megoins73 this has been THE LONGEST JOURNEY. We went for a second opinion last week, and he was diagnosed with transverse myelitis. His condition was a little confusing because he never lost the ability to walk, so they ran every test known to man to rule out any other underlying conditions. We are now waiting on a referral for him to get intreveneos steroid. His main issue is hypersensitivity. He can't hold a cell phone or computer for long or it starts to burn/itch. He's been off work since Jan. Hoping the steroids help. So kind of you to check in. Thankfully, he is no longer weak nor in extreme discomfort, every day gets better but still a long process. Did you fully recover?

[@Applesonthelawn]

I had a very similar experience, I my started with pins and needles down my right leg and right arm. My arm was also falling asleep at night I just shrugged it off as though I slept on it wrong. Within two weeks I couldn’t walk or write so headed to the a&e at first they thought I had a stroke so I was admitted that afternoon. I had numerous scans, lumbar puncture and blood work done then I was transferred to neurology who eventually diagnosed TM and gave me IV steroids for three nights within 2 days I was walking again and completely back to normal. I am so glad I went to a good hospital who took the time to investigate and diagnose me. Good luck to everyone dealing with TM.

[@megoins73]

I'm glad you are back up and moving on your feet. It's a scary thing when this happens. I've heard and have read so many different stories. I hope every can eventually be as fortunate as myself. Thankyou so much for watching!!!

[@triggb71]

Thank you. Our son was recently diagnosed with this and the treatment you spoke about is something that we will discuss with his doctors ASAP! We really appreciate it.

[@megoins73]

Hi... thankyou for watching. I truly hope that any part of my story can help someone. I have had the privilege of connecting with others and I do hope that im able to answer any questions. I know this affects people in different ways. But im always here to answer. Please keep me updated on how he is. And I wish you all the best. May I ask how old he is?

[@NatesRandomVideo]

Thanks for sharing Melvin. I was diagnosed in May 2019 but had symptoms all the way back to Jan 2019. My TM was very slow developing. It also doesn’t seem to want to settle down, and docs are still hunting for an underlying cause, with neuro symptoms increasing continually and slowly over a year. Pretty frustrating. Glad you responded to plasma exchange so well and I hope for your continued health.

[@megoins73]

Hello, Nate! So what symptoms do you still have left to battle of you dont mind me asking. I absolutely appreciate you hearing my experience out. Took me a bit to even decide if I wanted to upload it. But I was feeling very alone in my situation. Hard to even put into words. So if you're feeling like that you're absolutely not alone. Its hard for anyone to understand how you feel let alone experience what your specific symptoms are. From what I've been told usually they hardly ever find one cause. My neurologist simply asked me after months of visits have I been stressed!!! Which up until all of that I'd have told you NO WAY. LOL well after some reflecting. I realized I had been very angry about some things in my work life for like over a year.. honestly made me realize a few things for sure.. So having said all that I wish you a full recovery.. keep working hard if they have you in physical therapy. And do not let them just put it off with out working to get some answers that satisfy you. My main neurologist reached out to a lot of people but the other neurologist I saw while I was in the hospital was ready to send me home after a few days. Glad I fought that. Either way do stay in touch on how you're doing. Wishing you a full recovery my friend.

[@NatesRandomVideo]

Melvin Goins sorry hit like earlier but had to run. Symptoms right now are massive numbness below the same area on the chest as you all the way to my feet, some relatively mild vowel issues, and some serious neuro pain and problems with the right hand. Left hand also hurts but not horribly. Right side more affected than the left but fairly equal below the waist. Have had multiple steroid sessions, no plasmapheresis or IViG yet. First symptom for me was a feeling that both arms were sunburnt. Then it went to the foot numbness and then just continued to spread slowly over about a year. They’ve been treating it with MS drugs and tested for NMO, MS, various other things with nothing even positive let alone definitive. Hoping the referral to our University Docs leads somewhere. If not, a trip to the TM specialists at either the Mayo or John’s Hopkins might be next. Lots of PT, or I probably wouldn’t be walking now! Therapists are worth their weight in gold! The hand stuff ... not everyone with TM has... but it is so annoying and I chuckled at you trying to figure out how to describe it! I luckily never had the sensitivity in my legs or feet. Just the hands. Touching things ranges from strange to downright horrible sometimes! There’s an incredible TM support group in of all places, Facebook. “People Living with Transverse Myelitis”. Wonderful people. Many suffering much more than we are! The little kids with TM just geeks my heart - but I cheer when their parents post videos of them doing rehab and succeeding! Take care and God Bless!

[@NatesRandomVideo]

Melvin Goins oh yeah. Not super important but I forgot. My TM is what they call “longitudinally extensive”. Seven vertebrae. C2-T1 or most of my cervical spinal cord! It’s biiiiiiiiiiig! Haha. The look on the first neurologist’s face when he saw the MRI was a look I won’t forget. I think he was wondering why I was up and walking.

[@megoins73]

@@NatesRandomVideo yes touching things till this very day makes for some very interesting experiences. There are some textures I just avoid still because I know I wont like it. Lol. But when this all started like I had said I just thought it would go away. The first hospital sent me home like it was a waste of their time to see me. While at the 2nd hospital I didn't understand why they were asking me so many questions daily that didnt make sense to me. As I did my research after getting out of the hospital I saw so many others that never walked again. I also have come across a support group in Facebook. And seeing the children who have been affected by this and never walked again breaks my heart. And many of them seem to be so spirited still. Makes me realize I have nothing I can complain about and i have to keep moving forward. And yes Physical Therapist are amazing. I struggled with picking up change for a bit. And they came in like hey it's ok. We will get you right. They do not get their just do for sure in my book.. I absolutely will be checking in with you my friend as you love forward to the new doctors!!! Thankyou so much for Sharing a bit more.. and i hope you can keep shocking those doctors with more progress. Wishing you all the best.!!!!

[@slverkd79]

Been going through this stuff since November. First hospital was horrible. Second hospital much better. Tons of tests, everything normal. Finally got diagnosed with transverse myelitis. Feel alone. Glad I found your video. Thank you.

[@megoins73]

I know exactly that feeling.!!! You absolutely feel on an island alone for sure. The worst is the feeling that the people around you, although they care and love you, can't possibly understand. Just let them be there for you as best they can and ask them to listen if you ever need to just vent. I spent many days and days in the hospital being told how healthy I was. Im like uhhhh I dont feel healthy. Please tell me more of your story if you care to share. Either way I'm a message away my new friend. I wish you a full recovery!!

[@tibbytx1]

You are so blessed. My dad got this in March and died from it in November of 2013. I wanted to know what he went through so thank you for the video. His was more advanced because he was sent home twice from the hospital. It couldn't be treated.

[@megoins73]

Hello Tara.. thankyou for watching my story and reaching out. I'm so sorry for your loss. I will not burden you with questions. I know there is never enough time to make that loss dissapear. I know my recovery is definitely different than others. And I hope everyone is as fortunate over time. A year has almost past for me because the amazing Facebook loves to remind you of things youd like to forget. I absolutely thankyou so much for reaching out.

[@tibbytx1]

@@megoins73 You can ask anything. I have a million questions for you also.

[@megoins73]

@@tibbytx1 Feel free to ask me anything as well. In an open book. Did his start with numbness and tangling and were there complications in his treatment?

[@christinem9183]

Thanks Melvin for putting this up. My doctor thinks I have TM but I've not had an MRI or gone to the hospital. I didn't have the paralysis, but it's been horribly painful. I can hardly walk and for a month my foot was too numb to drive. I don't think there's any place near me that treats it. The allergist who told me that it was TM feels that it's because of my immune disorder and what I'm taking for that is probably the most helpful thing. It's getting better, but I have no idea how long it's going to take & why it seems to get better then relapse a little. The doctor said it would take about a year. And it takes 3 months to even get an appointment with a neurologist where I live so. I don't know if I should be patient or do something else. I feel like my insurance would fight me in anything beyond a doctor's appointment. And then it would be super expensive.

[@megoins73]

Hi Christine. Thanks for watching the video. I'm not sure where you are located. But I would admit yourself to the emergency for this if your local hospital is a good one. In my case at the time I had no insurance because leading up to all this I had been very healthy. Never sick so I saved myself the money instead. Turned out to not be the best choice. But they treated me as if I had insurance. At the very least you've needed to be on a dose of steroids which is how they treat it at the beginning. The Plasmapheresis was the second week for myself. From what I understand you immune system I attacking your nerves Myelin, Plasmapheresis removes the bad antibodies and let's your body make new ones. Again, financially I have no clue what it's like for you of course. But I can assure you I'd rather have a huge bill that I have and figure that out then the alternative. I was very lucky they told me I came in so fast. But it was a case where I didnt go in fast enough. When my fingers started tingling I should have went then. But assumed it would go away. I can love with the tingles in my hand. I hope this helps. I'd like to know more if youd like to share. Feel free to keep in touch and message anytime. Keeping you in my thoughts..

[@godislove7500]

kzbin.info/www/bejne/fGbdhWd6drmMmdk

[@shannoncox9208]

Thank you for sharing your story! I just got out of the hospital after being there for three weeks. I have lesions from T1-L2 and in a walker .. I couldn’t walk for almost a week... doing weekly plasma treatments and your story is giving me some hope of a good recovery ❤️

[@megoins73]

Hey Shannon!. Thankyou for watching. When did it start and did you go to the hospital immediately? Were they aware what they were even trying to treat you for initially? Its difficult to wrap your mind around that one minute you're walking and the next it's hard or impossible. I know exactly how you feel. The walker being brought into my room was where I drew the line in the sand. I told them I've got too much stuff to do, and I dint have time for that. Not like I had a choice. But it made me work hard to get out. To get enough coordination for them to let me leave the hospital. I have many questions but I will not burden you with that. Just k ow you can ask anything and I will always answer. Please keep me posted in your recovery! Go get em once therapy starts!

[@godislove7500]

kzbin.info/www/bejne/fGbdhWd6drmMmdk

[@Singledaddy734]

First of all, thank you for sharing. I'm 41 and contracted tm on Nov. 29, 2019. It took about an hour for it to kick in and was numb from the chest down. I also have tingling and numbness in both hands from middle to pinky finger. I have very little movement in lower body extremities. My insurance or medical, "kaiser" basically placed me in a nursing home for recovery, not explaining the situation of the difference between all the facilities. I also have a previous S4, L5 herniation, plus a pinched C5. It is very frustrating and depressing being here which doesn't have the proper equipment for rehabilitation. I'm very concerned that I'm going to not recover. It's been almost 3 1/2 weeks and it's been stagnant with movements. I do feel physically tired but mentally determined to get out of here. Please let more people know that to make sure they straighten out their insurance and medical and always ask questions. I had to learn the hard way...thank you very much and God bless!!!@@

[@megoins73]

Hey, I wish youtube had something more then a thumbs up. First off. I'm very sorry you're going through this. And to make things worse it is very difficult to describe to someone that has no clue what it's like to one minute be fine and then later youre not. So are they are they not treating you in any other way? Did they just say you have this and let's wait and see? Even if your insurance isnt doing the right thing is the hospital you went to not trying to do more even if it's not covered.? Sorry for all the questions. I just feel they may not have a grasp on what this is or what to do. I had so many doctors that I dont think the two head doctors agreed on anything. When they started my Plasmapheresis the one head doctor was like this is what we are doing. Then when he was off for the weekend. The other doctor was like I'm gonna stop this. But I argued that and they continued. So can I ask what they are doing at the facility you are at? Have you seen any neuro specialists? I cant imagine your frustration right now. I would continue to ask questions and demand more and hopefully someone listens. The plasma procedure they did for me is what helped me tremendously. I will gladly answer any questions I can for you. Just keep annoying them with questions. And if they dont know make them find out.. that's there job!!!! I wish you a complete recovery. I know it's tough and very hard right now but keep telling yourself regardless of what's going on currently it is absolutely possible to recover. You just have to will it into existence... Stay strong and fight!!!

[@Singledaddy734]

@@megoins73 I'm the youngest here in a nursing home, for long term care. The drs. Have talked about plasma but never followed up more.

[@megoins73]

@@Singledaddy734 keep on them... make them do there jobs. I knownits frustrating for sure I'd imagine. But that's what they get paid for. Please keep in touch with how your recovery is going. Please Dont let them make you settle for any then what you deserve.!!!

[@Singledaddy734]

@@megoins73 yeah, I've made some progress, and I do have movement and feeling. But still have "sea legs". I am waiting for the insurance company to hand over my case to the VA so I can get the proper rehabilitation I need in Palo-alto, California. But it's crazy how the insurance or medical coverages only care about the money and not your care. It saddens me that about 14000 people are affected each year from tm. And it just makes me wonder how many people go through what I'm going through....but on a different note: I really dont feel pain. It's more of a numbness, tingling, warmth sensation that I feel. I also feel like my lower back is swollen. But i don't have any pain. I have movement, and that's a good thing, but not up to my expectations....lol... thank you for communicating with me and take care.

[@megoins73]

@@Singledaddy734 progress is good. The earlier it's made the better. I'm left with tingles in my hands and fingers. But I will happily live with that. Good they are finally moving on getting you the proper care yiy need.. and yiure exactly right. Since I've made this video. I've talked to a lot of people that have had your similar experience. I personally believe if I had of been admitted into the first hospital I went to they would have done next to nothing since they just looked for stroke symptoms and sent me on my way. Its terrible how many are made to suffer because of a lack of knowledge/care of the individual.. this absolutely needs to change.. well it sounds like you are hopefully on the mend and going the right direction in your recovery.!!! Cant wait to hear that you are back on your feet and beating back TM and back at it.!!!

[@tylerbraschler7072]

Do they seem to think the Plasma treatment is treating the underlying cause of TM? I was diagnosed last week with TM. Similar story, started as tingling in toes, then feet, then hands and feet, then full legs, then was paralyzed from waist down overnight. Long story short, MRI and lumbar were clean, but they diagnosed TM in my neck vertebrae. Steroids helped in the hospital but as soon as I got home the weakness came on even worse and I couldn’t walk at all. They started me on outpatient steroid IV and the strength is slowly coming back. My fear is that the roids are just treating the symptom and inflammation of TM but not the cause of it. Therefore, once I stop with the steroids, it’s just a matter of time til it comes right back.

[@megoins73]

Based on what I know people still do not know why it happens exactly. Can be multiple reasons. Last time my neurologist asked me had I been stressed. They say anything can trigger your antibodies to do the wrong thing. Another video I watched the doctor said he believed in one patient it was a combination of over the counter medicines on a different patient. After 5 days on the intravenous steroids I wasn't getting any better. Then the main neurologist that I had recommended that I do the plasmapheresis. And that was mainly because I couldn't walk down the stairs very well and the weakness still existed. They jumped on doing that really fast two days later I started feeling better and the tingling and numbness start to go away. I stayed in there another week or so doing those treatments and before I left some tingling and numbness was still in certain areas but as far as the weakness it was all gone. And has not come back yet. Well I was off work in different areas this feeling came back and has not come back yet either. Currently I'm not on any medications I do see the neurologist regularly and he does want to have a follow-up MRI. Last time I saw him he said that he was very impressed that wasn't getting worse and only getting better and that he saw no reason for medication at the time. But based on the information that I have gotten from another person I met here where I live about her transverse myelitis that she was diagnosed with a very long time ago she has not gotten worse. Have they not spoke about doing a plasma Exchange? Or they just hoping that the steroids will do the trick? I can definitely understand your fear for sure. I would just ask your doctor. Reason why I said my May neurologist said they wanted to do the plasmapheresis. I had a second neurologist that works in the same group as my main one. And she wanted to stop it after two treatments. I guess she doesn't believe that that's what was doing the trick for me. And I refused to let them stop. I told her that I've already gone through the procedure of having this thing put in my neck I don't see why I wouldn't just see it through to conclusion. I honestly was very shocked that she listen to me. Feel free to ask me anything. Keep me posted on your progress. Doing light workouts they say helps. but I actually wish you nothing but the best! Do you stay in touch. And I mean it ask me anything at anytime.

[@tylerbraschler7072]

They haven’t mentioned it. I’m not sure they are even 100% confident it’s TM. The steroids started making a difference right away, so I think they are just in holding mode until they get all the test results back. So far all they know is my white cell count is elevated and that along with my symptoms point to spinal chord inflammation, and since the nerve pain and weakness is also in my arms, it has to be in my neck. I have an appointment with my Neuro next week and will mention the plasma treatment, will let you know what they say. I appreciate the dialogue. Such a rare condition and it’s hard to talk with people, even medical professionals, who truly understand what I’m going through. At this point just trying to keep what muscles I have from deteriorating and making sure I can still walk once this is all hopefully resolved. Can take about 50-60 steps a day with the walker and I’m maxed out for the day. But again, the steroids help that quite a bit.

[@kritishrivas8770]

Hie so u are now able to walk

[@jameslighezzolo3444]

Hi Melvin im 53 years old and even with me i never had gone to the hospital for anything ( never ever had any big problems ) til 2 years ago when as you described the strange finger sensations start. now 2 years later which means a week and ahalf ago i got the diagnose from the doctors (after 4 lumbar punctures and 3 reoccurances ) they finally told mre that it has been confirmed its Transverse Myelitis . ... so with i thank-you that you have told me your story . Its helps to know that im not the only one . Though now at my age having the doctors tel me that i cannot go to work any more cause im classified as disabled and thinking how am i going to pay rent , bills , and on what money will i live ? ITS Scary . but thanks for your talk . Jim

[@megoins73]

I absolutely hate the thumbs up on this thing or the heart.. those are terrible options.. I know exactly how you feel. You feel as though no one understands no matter how much they say they do. Its impossible.. yet we know they are trying to. Everything about it is strange and almost unreal. One day youre fine and then youre not.. ive been meaning to make a follow up to that video. I've had the privilege of making the acquaintance of many people in our situation with varying degrees of severity and ages. Breaks my heart to read many stories from Parents of young ones to spouses and the ones affected. Many who have given up and some still fighting. Ive tried my best to offer whatever I can in advice or encouragement. This video helped me tell my story and the stories of many who have this and just feel alone since its rare. The way your started, like mine, seems so simple and small. I do wish and hope for the best for you.. I hope they are still trying to treat you in whatever way they think may help. Im here to chat at any time.. I know there are no words to help. But I kept telling myself. I've got too much shit to do...my doctors would come into my room and id tell them I had too much shit to do.. so if I got too much shit to.. im sure you do as well!!!

[@jameslighezzolo3444]

@@megoins73 well i will be starting a strange drug ( scares me just seeing the side effects but , i got no choice theres no cure . im at the point that both my hands have that tingling and numbness to the cest down to my feet and i also lost about 60 -70 percent of my eye sight in my left eye as well . im taking steroids ( 50mg prednisone pills and will have to take them at lesat for 90 days ) the strange I.V i will start once i get it covered by the health care . I was told that it costs 10,000 dollars cdn . the I.V. that my autoimmunist will give me is callled RIXIMYO have you heard of it ?

[@megoins73]

@@jameslighezzolo3444 yes ive heard of it.. its used to treat various different conditions. With what limited information i have heard its more recently used to treat auto immune diseases. Or so I was told. Yes, the side effects can sometimes be more scarry then the condition itself, but still worth the shot to slow down and or hopefully recover. I know all too well the feeling you describe in your hands. Mine still have a tingly feeling slightly. Its a reminder to me where I came from. So I try to view it as such. I mostly am simply use to it and its just a part of my life. I wish the same for you one day where this is all a very bad experience you get to talk about in your post recovery. Positivity is all we can put out there. Stress and worry makes these things even more powerful I've discovered. Leading up to my attack I had been frustrated and stressed for many weeks about some things. Based on all my scans and such, per my doctor's, I should not have walked. And definitely not like I was.. Yet I am. So I live daily knowing that I need to have more fuck it in my life. So I try to remain stress free.

[@jameslighezzolo3444]

@@megoins73 well I thank you for your story , it lets people understand better what a person who is effected by this illness has to go through. Thanks Melvin .

[@megoins73]

@@jameslighezzolo3444 thankyou for watching and contacting me. I wish you the best and please let me know how your recovery comes along.

[@brigg6082]

Great video, glad you are ok.

[@ChiChi-sw8ww]

Hi, it's been a while. So I got my results yesterday. I do have TM in my cervical spine. The neurologist was surprised when I was able to keep the medical conversation going. I had researched into it quite a bit since October. I also got a second diagnosis. I have a lesion and spots in my brain, so I have a diagnosis of MS. Is there a spot on your channel where I can find your email? I think it would be easier to chat that way. We were both right. The symptoms sounded and felt like TM. I didn't expect the MS. Oh well, I am super happy I caught it this early. I hope you've been well.

[@megoins73]

Was he surprised??? Lol you tell him you may know as much as him.? I just realized my email address isnt on here. I should add it. Dont know why I haven't. Its [e-mail]. I was re reading comments last night and was wondering how you had been..!!!! That's a crazy coincidence.. hahaha. Well reading your doctors diagnoses and knowing they got it early that's good.. ant meds they are going to give you? Ok I will wait for your email. Glad to know you're doing well and finally have some answers!!!

[@ChiChi-sw8ww]

@@megoins73 Email sent :)

[@megoins73]

@@ChiChi-sw8ww responded.. lol. :-)

[@megoins73]

@@ChiChi-sw8ww do we have a little one yet!!! Hope you're well!!!

[@ChiChi-sw8ww]

@@megoins73 No not yet. Waiting for the call still. It might take a year or so. Did get a full diagnosis of MS though. My lesion in my spine is MS. And the best part is that my MS is not going to hinder our adoption in anyway! How are you?

[@louturco8025]

Thanks for your help.

[@kenadeemccoy3219]

Hey! I was diagnosed with TM, it was in my legs when I was at holiday world. I was in the hospital for the whole summer and for my birthday😫 still recovering but getting better

[@megoins73]

I hope you have a full recovery!!! Keep fighting and work hard!

[@megoins73]

Hi Kenadee!! Just wanting to check in and see how you're doing? I just realized when I reread your comment. That if you were at Holiday world. You were prolly from or near the dreary midwest or Indiana in all this rain. Lol. Hope you're better or almost there..

[@louturco8025]

Thanks for sharing I have had TM for 22 years I’m 59 now. Your symptoms and experience is very similar to mine. Is it to late for me to have plasma. Isan’t plasma dangerous it’s chemo right. And what hospital were you in. Thanks for any help you can give me.

[@megoins73]

Hey Lou.. Thankyou for watching...!! The Plasmapheresis is basically where they remove a certain amount of blood , spin off the plasma in the blood and replace it with donar plasma or a synthetic protein that acts as your plasma until your body reproduces the antibodies. It's the same process they use for chemotherapy but its different. I can't say for sure what the longest a person can go without having the treatment before it would or wouldn't work. I was in the ST. Francis hospital in Indianapolis... can you elaborate more on your story?. If you care to of course.. I hope to hear from you again..

[@SmokedMeats]

Dig the shirt man. Keep it up

[@sumichetry8850]

Hey buddy, it's Sumi from India, I faced same problem last year August , now improving,I can walk without any assistance but not that properly, having footdrops and balance problem too.💪

[@megoins73]

Sorry for the delay. I have not been active on KZbin. And notifications for KZbin are terrible. Can I ask how are you feeling now?

[@networkrealm15]

Hey man thanks for the story..and my legs recovered 100% in 6months after TM..but Erectile Dysfunction has occured after myelitis and haven't shown encouraging result as of now..will it be cure ever or have u come across people with problem like me and were they heal..and do u know how to improve this condition

[@megoins73]

Hey man, I'm glad your recovery in your legs was so swift. As for the ED, I personally didnt have to deal with the symptom. But I know of a person who has and they said they did make a recovery although it was very slow. As far as a cure. I have only heard they are moving to phase two of a medication that helps to remyelinate the nerves. But I have no idea how that is going or if that would even be successful. I just hope for all affected by this that it will be.

[@abhijeetsuryawanshi3516]

Hello....did you caused footdrop also??

[@ChiChi-sw8ww]

OMG Thank you for this video! Ahahaha! I totally get you! My story is a touch different. I woke up without feeling my legs. Well, I could feel them... like you said hard to describe. Oct 15... I didn't want to believe that something was wrong with my legs. From my belly button down, I could feel my legs but I couldn't. I just thought I slept funny and they fell asleep. I made my coffee and my breakfast. Sitting on the chair I noticed sitting was like sitting on a gel cushion. I stood up. Wobbled around the kitchen. I work with special needs children so there was no way I could go to work. I called into work saying, "Um, so, you're not going to believe me but...um... I woke up, and my legs didn't." Idiot me didn't want to believe anything was wrong, I drove myself to the hospital. MS was dropped a bunch of times. Lucky for me, an intern was there that just got done her neurology stuff. She knew exactly how to test me. I was sent for CT scans, MRI, and blood work. All came back normal. I was quickly sent to the MS clinic in Vancouver. (I live in a tiny town that you have to take a ferry to get in and out of.) During my wait to see the neurologist my hands started to go. Pinky to the middle finger, and half my palm. Oh, the hypersensitivity! Shoes, shower, all of it is the devil! I get the blanket thing. I had to find the softest, smoothest, socks. Turn them inside out, to be able to sleep. When I laid down it felt like half my body was floating! Do you get vibrations? As if a subwoofer is sitting behind you? I get it in my hands, feet, and legs. I'm still untreated but what you just described is everything that's happening to me now. I never stayed in the hospital. I had to do all my own home treatments because no one knows what's happening to me. I taught myself how to walk, with my husbands' help, and have quick body temp showers. I still have hypersensitivity in my hands, feet, and legs... Thank you for sharing this video. It's made me realise that I am not crazy.

[@megoins73]

Thankyou for watching..!!! Did they do a steroid treatment or plasma exchange? Yes everything that you're going through is very weird and frustrating to try to explain to someone else. It's like you want them to understand so badly. But they never will. I was having a lot of difficulty waking and the doctors told.me I had to use a Walker. Uh I was like "no". Weird was that without any thought I could walk ok. But if someone asked me to walk it was a huge challenge. I had major coordination issues. Spilled water on myself. Accidently slapped myself in the face trying to sway a fly. It's all very unsettling. I hope they are able to get you to a specialist. Its important that you do. Based on what I'm being told. I've met someone else that has been diagnosed with this as well. And it was so crazy to meet someone that knew exactly what it feels like. It's been rough. My hands are still this way. But apparently this could have been worse. Yes I know exactly what you mean about the vibrations. I fee it in my hands and at times in my arms. Some things to the touch are very uncomfortable. So I watch what I touch now. Feel free to stay in contact. I love to know how things are going for you. I hope you start to recover quickly. They say full recovery could take up to a year. If a full recovery happens... you absolutely are not crazy. But in the beginning you feel that way..

[@ChiChi-sw8ww]

@@megoins73 I'm undiagnosed and untreated at the moment. I have another MRI scan in January. I don't have a lot of medical facilities around me. With my husbands' help, I clutched a pillow to keep my back straight while I taught myself to walk. Blankets felt like daggers and my carpet felt like broken glass. I also had hot and cold things happen, where I thought my feet were cold but they were warm to touch. Do you get a wet feeling? Sometimes it feels like my leg has been dunked in water... but it's dry. My legs feel much better and the stiffness has gone away for now. I kinda get the hypersensitivity for a few days to weeks and then two good days where I think I'm getting better. Then the vibrations kick in for a while. Although, if I go for a walk around the block... the vibrations kick into high gear. Textures like the scrubby for dishes, hair, towels, and hot/cold water really hurt my hands. Not that it's actually hurting me, but it feels painful to touch. The best thing I have found is keeping positive. Recognizing that I can't do things the way I used to, and do the task in a different way, even if it takes longer. And, dance! Even though it looks hilarious and I don't move well. I dance through it. I'm still undiagnosed. I hope to have more answers in January, Februaryish. It's so hard to talk to people who have no idea what I'm talking about. When I was in the hospital I told them my legs were numb but not numb. I couldn't put words to the symptoms. I still can't. Sorry for the long post again. Cheers!

[@megoins73]

@@ChiChi-sw8ww LOL I absolutely do not mind the long post. After all you watched my long video LOL. That makes us even!! Yeah it is definitely great when you can finally explain something on how it feels and they absolutely understand how exactly you're feeling. That was absolutely one of the worst parts of this entire experience so far. Trying to explain to somebody why touching their shirt feels uncomfortable. At its worst for me the day before I went to the second Hospital my clothes on my body was extraordinary painful. So yeah I understand everything you're saying. So when the other person had just finished taking their neurological stuff talk to you. Did they use the words transverse myelitis.? For me what's scary is I didn't realize that some people that get diagnosed with this. Well the majority of most people that get diagnosed with this are paralyzed. And some never walk again. So I had spent a lot of time feeling really bad for myself until I saw that. Which kind of drug made to make the video. Hoping that somebody else out there may be wondering what's happening to them and possibly what I'm talking about is what's wrong. So trust me if you ever need to talk to somebody about how you're feeling you can talk to me in day of the week. And that's really great that your husband is an awesome support system for you. That's a key important thing! So have you been able to get a normalcy back to work?

[@ChiChi-sw8ww]

@@megoins73 The MS clinic in Vancouver told me that it might be Transverse Myelitis. They are leaning more towards that diagnosis than MS. I have seen the videos where people have been completely debilitated. It's a scary illness. I am back at work again. I was off for a month. This happened back in October and I still haven't received any news. I was off for a month and a bit. I gave myself daily goals. One is I had to be able to get down onto the floor and back up again. Since I work with preschool children it's important to get down to their level. Once I reached those goals I gave myself another. I had to walk around my block. (It's a small block.) My work was very understanding and I did a slow back to work schedule, so my hours were halved. December I started to work full time again. I do struggle with keeping up sometimes. Walking fast, or fast movements send a shock wave of vibrations through my hands, legs, and spine. I have remained positive throughout this journey. I understand that it could have been much worse. I am taking some natural pathic medication my mom gets for her MS. The Natual doctor says it helps with the inflammation. I find if I skip it then the sensations come back full swing. I will be talking to the neurologist about how your story sounds like mine and to test me for TM. One question, does your tongue sometimes feel like it's being pressed against a 9-volt battery? I get that sensation before the hypersensitivity kicks back in.

[@megoins73]

@@ChiChi-sw8ww no I cant say I have the sensation with the my tongue. That would be a very interesting one to have. For the most part my hands are still tingly and numb at times and at its worst I feel it up through my arms. I used to have a weird sensation when I would look down with my head. And tingly sensation with shoot through my spine and down through my arms. I feel like in the last week or so that has subsided as much as it used to. Which I am definitely grateful. My hands are definitely gotten better since it all started but they're definitely not completely back to normal. On occasion I still have a few balance issues that I can feel nothing people notice anymore. That's absolutely great that your job has been accommodating with the time that you need. I have heard stories since this has happened from others where they have not been so lucky. How far is it to travel from where you live to Vancouver.? Sounds like you might be kind of cool to be in such a small place where you at the ferry in and out. I've only been fortunate enough to visit a few places on the Great Lakes here that do that.. Based on what you're telling me it sounds like you have a great spirit and a positive attitude and will conquer this...

[@faisalamin6032]

Hi Sir hope u r good.My wife diagnosed TM 2 months ago.She admitted in hospital 15 days. Five session of plasmapherese done.When discharge from hospital doctor advice for phisyotropy. 3 time phisyotropy done by phisyotropist every day. My wife have near about all sensations come back but her both legs are not moving since. From 2 3 days she have very pain in both her legs.She take steroids,pain killer daily advice by doctor but not feel better for last 2, 3 days .Sir can you tell me reason for this pain n she told pain is like different she feel her legs like frozen. Sir waiting for ur soon reply because my all family very worried about this type of pain and kindly tell me any one other have pain like this??

[@megoins73]

Oh wow.. I am soooooo sorry.. you tube does not send notifications often and I have not been on you tube for a bit. I plan to come back soon. Either way I apologize greatly for the delayed response. I guess first off how is your wife now? I hope she is 100% better. To answer your question. I had minimal pain. But tm affects many in different ways. This pain from what I understand is from nerve damage.. they never really elaborated on it often with me because I didnt have this high level of pain that has been described by many. I will await and check back for your reply if there is anything else I can answer for you much sooner. Again im so sorry I did not see this post.

[@BornOnPurpose83]

I'm 5 years in with no answers. Do you have to keep getting the plasma exchange? What treatments are you doing now?

[@megoins73]

Im so sorry. I litterally just saw this. I apologize. Im fortunate that I currently am just being watched and regular appointments and MRIs to make sure things are stable. I have some days where things arent perfect of course. But my doctor continually tells me that he believes in the plasma treatment but doesn't know how i managed to recover as well as I have. My hands never got any better then how I described in the video. But its a small price to pay and a reminder. Id like to know more about your story. But only if you care to share.. I do not know how I missed the notification for your post. Again I apologize. Feel free to ask me anything. Ill be looking for your response if so.

[@BornOnPurpose83]

No worries, that's great news. Thanks for sharing. Happy new year 🎉

[@tracyfrederick5606]

Some of the symptoms are very much like when I had my stroke.

[@megoins73]

Yes that was one of the things that they checked when I first got there to the hospital that day. Which they discovered very quickly was not. However it took them almost a month-and-a-half to two months to figure out what was actually wrong with me :-(. However I hope that you have recovered well? Thank you for taking the time to watch and reaching out.

[@chyna418]

I just got diagnosed with this lost feeling on my left side from my stomach to my toes smh so stressful not knowing what caused this. I’m still waiting for blood work no feeling since July 27th

[@megoins73]

Trust me. I absolutely understand how you feel. I felt like that for weeks. This time last year I was in the hospital in week 2 with still no answers. If its TM then your blood work will come back good and they will still look at you shaking their heads. All I can say. Is continue to badger them with questions. Force them to find and give you the best answers they can come up with. Are they treating you with any kind of procedures at all.? Always feel free to message me. I know what's its like to be alone and have no one to be able to understand just how you feel. Keep me posted. I wish you the speediest recovery.!!!

[@nicolahudson1213]

Did you get better or still having problems?

[@nicolahudson1213]

Did you get over it?

[@megoins73]

@@nicolahudson1213 im not sure how I missed this. Im so sorry..I absolutely got better. I still have small hypersensitivity in my hands. But I can live with that. It took me about a year to get to this. Alot of my recovery was very fast then. The rest slowed down after a few months. But im very satisfied with where I am.

[@nicolahudson1213]

Yeah I'm still waiting patiently on my recovery

[@Flytv345]

I was diagnosed with TM also a month ago,

[@Justpeacegia]

Thank you for sharing your story ♥️

[@nicolahudson1213]

I've been diagnosed with it and in the hospital over a month now and still no feeling from the chest down

[@megoins73]

Hello... im so sorry youre experiencing this terrible disease. Are you able to walk with no feeling? Can I ask how they are treating you for it.?

[@nicolahudson1213]

No, I'm still here with no feeling from the chest down in the hospital bed. Will be starting rehab this week so I don't know what to expect yet

[@megoins73]

@@nicolahudson1213 so no other treatment. Steroids or plasma or anything? May i ask where is hereby? my heart goes out to you and im wishing. I can not imagine how you are feeling. I do hope determined because it will take that. There is a girl. I cant remember her name. But she had this also that severe. She is technically Paralyzed. Yet, she walks.!!! She dances and is an ESPN analyst. She did dancing with the Stars. Like 2 years ago. I had never heard of transverse myelytis before this.. im still learning. I had not met anyone at all. Since this video I've met many Nd try to stay in Contact with anyone that would like to. I'd like to know more about you and whaver you will share about this trying time. I will always respond to any post or email. I hope to hear from you. Im wishing for you the best possible recovery.

[@nicolahudson1213]

@@megoins73 i did the plasma already and I'm still on steroids but still no movement on my body. I even developed blood clot in my chest by just laying here

[@megoins73]

@@nicolahudson1213 ok. Well ztleadt they tried that. Was this a sudden attack or over time?

[@l.a.w.79]

Yep. But imagine ongoing/ off and on weirdness that is not quite that drastic. It’s called multiple sclerosis.

[@megoins73]

Yeah. I know what you mean. I do know a person with MS as well.

[@abhijeetsuryawanshi3516]

Hey Melvin.....in how much time you fully recovered?? Did you caused footdrop to during TM?

[@megoins73]

Hey Abhijeet... I was off work about 2 months. My hands never went back to normal how they were before, unfortunately. But I've gotten use to how they feel now. The majority of my recovery took place in my 3 weeks after my Plasmapheresis (plasma exchange) treatments. A far as any issues walking. That was a work in progress for some time. I have fully recovered there. As for my foot drop it was mild compared to some. That corrected itself after a few weeks. But there are excercises that can be done to aid in that. Are they having you do physical therapy at all.?

[@abhijeetsuryawanshi3516]

@@megoins73 Thanks for the reply.... currently i am doing physiotherapy regularly and its been almost 3 months ....i am able to walk with cane....hoping for the best for complete recovery..

[@megoins73]

@@abhijeetsuryawanshi3516 absolutely! I'd say I was finally done recovering to where I am now after a year. By all means please stay in touch.. If there are any questions I can answer I'll definitely do so.... work hard during the therapy. That's where your major progress lies.

[@abhijeetsuryawanshi3516]

@@megoins73 yeah man ofcourse....actually my right leg is almost recovered but left leg is still weak getting strength very slowly with mild foot drop....is there any chance to recover fully ??

[@megoins73]

@@abhijeetsuryawanshi3516 you absolutely 100% can!!!! I spent alot of time doing therapy in the hospital and at home. And achieved what I had hoped for. When you can get in some regular exercise do it.. You keep working hard and you will see.

[@louturco8025]

Do you think it is to late for me to walk again 22 years. Thanks for your help.

[@megoins73]

Lou, I dont think anything is ever too late. I wish they knew more about this. And there is a story about a girl who has exactly this and she did dancing with the stars 2 seasons ago. She is officially paralyzed and yet "She walks.!!!!" Victoria Arlen. Look her story up if you havent heard of her.. message me anytime!!!

[@aliyahceramic1520]

That what happen to me diagnosis same story

[@megoins73]

So many stories like this, yet not enough of us for it to be mainstream news.. I hope you're doing well..

[@networkrealm15]

Bro i was diagnosed with TM recently and made a recovery within 2months but this disease effected my urine flow its not normal I mean sometimes I get discreet flow and sometimes continuous. Will this also get better with time.. its already been 3months since I got affected. Could u enlighten me on this plzz...

[@megoins73]

Hey man.. . I'm very glad you've made a recovery from this. It's a very difficult thing to talk about because most people will never know how this feels when you describe it. As for what you're going through I did not have those symptoms. With any neurological disorder, symptoms can vary in wide degrees. What I do know about that with talking to my Neurologist and neurosurgeon is that that type of nerve damage may take more time. What you're experiencing is a disruption from the brain through the spinal cord.. I would hope your doctor has discussed this with you. The brain does not know if the bladder is full or not. So it does not know when it has to go to the bathroom. Or when you do go. It has no way to know if your bladder has fully emptied or not. Which is why you are possibly experiencing these issues. Over time more muscle memory may return to help relieve these symptoms. The nervous system is a mysterious thing and does it's best to repair itself. It is possible for these symptoms to subside over time. But it will be a slow recovery my friend. Another person I met has experienced what you are going through and they did make a full recovery with that. But it took alot of time. I hope I was able to answer your question. What has your doctor talked you about with this if anything.? Alot of them do not know alot and are still learning about this rare disease. Force them to answer your questions or find out the answers. Feel free to ask anything, I will always respond. I wish you the best in your recovery bro..

[@tashagreen5768]

Did you feel a tight band around your chest or torso area?

[@megoins73]

Hi Tasha. No I can't say I felt any tightness in either area. Just alot of numbness and hyper sensitivity throughout most of my entire body. Are you experiencing something?

[@samueljchung]

Hi Tasha.. I feel like I have a tight band around my midsection.. right around my ribs.. still don’t know what it is yet.. did you have a similar feeling? Did you get diagnosis and how are you feeling now?

[@tashagreen5768]

@@samueljchung Hi! I did get a diagnosis of Transverse Myelitis. I do have a lesion in my neck at the c2 level, which is what was causing the band like feeling along with a ton of other weird things. ..Its been 8 months now, and I feel much better. My hands do still tingle, and sometimes after walking I get a "popping" feeling in my legs, I also get neck pain from time to time. It took a ton of test to get to the diagnosis, but it also ruled out a lot of other things.

[@samueljchung]

@@tashagreen5768 that’s good to hear.. what did you do for treatment? Any other symptoms? I’ve got crazy numbness/burning in my legs/feet and some drop foot issues. How long after you started feeling symptoms before you got treated? I’m scared that I’ve waited too long to address my issues.. I’ve got an MRI coming up on Monday. Did the MRI show your issues?

[@tashagreen5768]

@@samueljchung for me, my symptoms were all over the place. It started with a tingling in my feet, and slowly worked its way up my entire body, over the course of a week. I had muscle tighness in my calves (spasms) and weakness in my hands(I couldn't type so well on the computer), burning sensation in my feet....Diagnosing me took a few weeks honestly. We did a nerve conduction test, which was fine, then we did a few MRIs, and found a single lesion in the neck. I then was sent for a Spinal Tap to check for MS, that was also negative. Idiopathic Transverse Myelitis was what they ended up saying I had. I did see 3 different drs, ending up at Duke hospital with a specialist. Treatment was steriod infusions. 4days. Which I was we could have started them sooner (the sooner the better of course) but as I said it took them awhile to figure it out.

[@LeafFreedom]

I have a question here, does anyone actually collect disability for TM? I've been a horrid case many surgeries.

[@megoins73]

I believe anyone who feels they can not work can prove disabled. Im not sure what the process is though. But as a neurological disorder you absolutely should be able to!!!!

[@Halo-li8hg]

The clothes on the skin is the weirdest feeling in the world! It's a mixture of numbess, squeezing, burning prickly awkward crap!

[@megoins73]

I absolutely never thought of it that way. But bow that you mention it. Lol absolutely describes it well.!!!!

[@kathyw605]

@Angela R & @ Melvin Goins, my husband is undergoing treatment for TM but his symptoms are somewhat different than many others. He never lost the ability to walk. However, he is dealing w/hypersensitivity. He is super sensitive to all electronics. He talks about numbness and mostly burning in his hands. But recently, despite IV and oral steroids he is still struggling and can't use a cell phone, watch television, and be under lights for long- it's heartbreaking to see him sitting in the dark. I haven't heard of anyone describe these symptoms. Did you feel anything like that?

[@megoins73]

@@kathyw605 I've never heard of anything like that.. so when hes watching TV his skin burns? I can't imagine how he feels. I hope they can come up with answers for him soon. I'm sure you are, but just continue to be strong for him. How long have these symptoms been going on?

[@Halo-li8hg]

@@kathyw605 I know theres greater sensitivity to heat and sound with MS and TM but more so MS. Hope he gets well soon. Excersize and vitamins saved my life I never thought I'd say that but it worked. Yes I get tingles in my legs and forearms everyday

[@kathyw605]

@@megoins73 the burning has been for 3 months. In er now, they are admitting him, thank God. They believe the steroids could be causing the psychotic episodes of burning. He doesn't watch TV or sit in the light cant hold a cellphone or regular phone, he can handle sunlight-strange. Couldn't find ANYTHING online about this being a side effect of TM. But glad he's been admitted, maybe we can get to the bottom of this. Insurance red tape is INSANE.

[@JustMe-ne2ne]

Thank you! Me too 😔

[@megoins73]

Do you care to share more? :-(

[@solidtoast7698]

Did you experience any kind of uncontrollable panic attacks?

[@megoins73]

No, I didnt have anything like that. I mean the odd feelings of not knowing what was going on definitely made me worry but nothing like that. Are you having those or worried about that as a sign?

[@Singledaddy734]

@Solid Toast. I am experiencing little panic attacks. Also very bad depression, and emotional stress.

[@mirzaismailahmad8866]

Hello sir, how are you 1 years transverse meleyties and able to walk without support but left hand finger no improvemnt and no bladder control please help me

[@megoins73]

Hey, I'm very Happy about your having the ability to walk unaided. That alone is a accomplishment in itself. Are you unable to move the finger at all? Has your doctor gotten you into any kind of therapy for this? As far as the bladder control that side adfect of TM is very unsettling for sure. I have known a couple people that have had the unfortunate side affect as well. They were able to recover control though the use of a few dietary changes and medications. What has your doctor offered to do to assist you in these struggles since you were diagnosed?

[@mirzaismailahmad8866]

Sir please send mail id

[@mirzaismailahmad8866]

@@megoins73 plz send mail I'd

[@megoins73]

@@mirzaismailahmad8866 hey what's up man!!! are you talking about my email address?

[@mirzaismailahmad8866]

@@megoins73 yes sir