My Painful Journey to a Stiff Person Syndrome Diagnosis

[@donnathurman6249]

I'm wondering if they're wrong about the one in a million because so many health professionals don't know about it. Then they get misdiagnosed, etc. Thank you for sharing. I've been dealing with severe spasms, been to specialist, had multiple tests done. No one has diagnosed my symptoms. I'm from Missouri, USA.

[@donnathurman6249]

The point being...how many more people have sps but it has not been diagnosed yet.

[@deanna777]

I wanted to let you know that it's not just Dr's in your country's medical system that treat their patients like idiots. I live in Tennessee in the US. I have seen many Drs including 5 neurologist & 2 neurosurgeons. Every one of them have acted like they had made up their minds about me before they walked into the exam room. Only one of them agreed to watch a video of me shaking. It was about 10 minutes long. He watched about 10 seconds of it. He then declared that he knew exactly what was wrong with me. He said that I was having a physical manifestation of a panic attack. Unfortunately that diagnosis has followed me around for yrs. Since every new Dr requires all your prior Dr's reports get sent to them before they see you. The last neurosurgeon was at Vanderbilt, which is supposed to be a super great research hospital. I had such high hopes. Unfortunately, the jackass walked in and told me that I needed to go see a psychiatrist. That was without him examining me at all. He had read all the notes from previous Drs. It all stems back to that first one not taking the time to listen to me. I've watched videos of ppl having the intense muscle spasms to the point where their body is in a twisted knot. That's EXACTLY what my body does. One young lady's arm was curled up behind her back. I showed that video to my husband & his mouth dropped open because that's what happens to me when I have my most painful episodes. We both have an appointment tomorrow with our GP for a checkup plus for our quarterly bloodwork. I'm going to ask if she'll add on a GAD antibodies test. I'm hoping she will. She's wanting to send me to the Mayo clinic in Minnesota since we didn't get answers at Vanderbilt. That would be a hard trip for me but if that's what it takes to get answers, that's what I'll do. Sorry this was so long. I just wanted to tell you a tiny bit of what I've gone through so you wouldn't feel like you're the only one fighting so hard just to have a Dr listen to you. Thank you so much for sharing your story!!

[@njsmkmmsthatsit3518]

Yes that's true it happen's all over the world. Also women, especially young women are discriminated against in the medical field and apparently black women are even worse off. My suggestion for any one that is not getting answers is to do your own research. As well as seek out groups that cater to people with what ever diseases you think you might have. The health groups on FB are just one suggestion. I used those to find out so much of what my condition is about. However what I found most helpful was that they quite often talk about what Dr's are worth seeing and those that are not. The last thing I would suggest is when you see Dr's never tell them you have done your own research. Also if you can, try to be very humble, do not let them know you are doing your own research and try to make them think that they have given you all the answers.

[@rebekahcheatham6139]

I know what being brushed off by doctors is like too & I feel so frustrated for you. I really hope you are able to get some answers soon!! ❤️

[@BeckyinKC]

God bless, thank you for the information. I Hope and Pray you reach your goals with NHS. Thank you for sharing. Becky from Kansas City

[@e.sjolund4011]

❤️ Thank you for sharing your experience. 🙂👍❣️

[@HopefulCanadian]

I can’t even imagine how overwhelming this all must be ❤️ I can also imagine it being exciting and a huge breath of relief to have this glimmer of validation and openness to finally get some understanding. I’ve struggled with some different health issues and strange symptoms leading to years before getting a real diagnosis. It’s exhausting and weighs so heavily on your soul as well. All I can say is I’m sending you huge hugs and that I hope you feel all the love in this moment but also remember to rest when you need to 🥰

[@e.sjolund4011]

I do not know anyone with sps but I am very curious. What where your absolutely first symptomes?

[@amyholaday8469]

I think you’re both very well spoken and your message is important! Keep speaking your truth!

[@carolvanrooyen2488]

Not “your” truth but “THE” truth!

[@foodlover7798]

I am both CIDP and SPS patient for more than 1 years, now I am under the IVIG treatment and get better.

[@garybrunet6346]

Thank you for sharing!😊🇨🇦

[@Bibi-ym9fp]

Traduction en francais s'il vous plaît !

[@suzannecipriani7663]

Chronic Lyme disease patients aren’t taken seriously