Need support. I have something worse than Fibro

Dear my wonderful Fibro friends, I am in shock and disbelief about my recent diagnosis of Moersch- Woltman Syndrome. It is also called Stiff Person’s Syndrome. It is a rare autoimmune neurological disorder. One in a million people have it. And yesterday I found out I’m one of them. I don’t have fibromyalgia. I saw a neurologist earlier this week. He had me walk down the hall and back. Based on my gait, it prompted him to order a blood test called Glutamic Acid Decarboxylase 65 AB. The normal range is 0.0 to 5.0 My result is 237.2. It is progressive and there isn’t a cure. There are treatments like IVIG, Plasmapheresis, Stem Cell , a specific chemo called rituximab, physical therapy, occupational therapy, muscle relaxants and benzodiazepines. I knew for well over a years that there was something more wrong with me. I have had multiple scans, MRI’s, etc. which have come back fine. The blood test I just had, doesn’t typically get ordered. And what I have is often misdiagnosed as MS or fibromyalgia. Based on what little I have read, I’m pretty advanced in the stages of this disorder. It will be interesting if my family rally’s around me. With fibromyalgia, my sisters did not want me to talk to them about it. I’m already to the point where it is difficult to make food. Often times, I have to hire someone to walk my little fur baby. I walk like the tin man in The Wizard of Oz. I’ve fallen once. My symptoms are worse than a month ago. I don’t live by family. I live alone. I have been having muscle pain and spasms for over a year that make me yell out in pain. I’ve recently developed light sensitivity. I have noise sensitivity. I read that toward the very end, a person can have muscle spasms and muscle rigidity so bad that it can break your bones. Now I don’t know if I can even get support from all of you anymore because I don’t have fibromyalgia. I could really use your prayers. Love, Freedom ( Jean)

4 Likes

Hi Freedom/Jean -
Of course you belong here :bangbang: :hugs: - and will get our prayers and support and all :pray: This isn’t any old condition anyway, it’s very close to fibro, so even apart from you, the condition should belong here too.
However I’ve found one “tiny” sub-forum somewhere else about it, which might be a help. Ben’s Friends doesn’t seem to have one yet. And very moving youtube-videos of stiff-persons… :roll_eyes:

I see you’ve done a lot of homework already! I always find that helps me to realize where I am.

One thing I’m wondering is how many other indicators apart from the GAD-antibodies you have:
Neither GAD-antibodies nor their levels seem to be a safe one. As a neurologist he will have done an EMG, but has he also let more bloods be done and excluded the similar diagnoses?

I’m really with you here… :bangbang:

This is carrying on from here: JayCS’s Fibro Blog (see summary-thread ∑) - #332 by JayCS

Jean,

My heart goes out to you as you maneuver through this challenging time in your life. It’s is good that they at least were able to give you a diagnosis so you can research the disease.
I’m sure it must be very challenging being alone and away from family. I guess my first step if I were you is to get closer to your family somehow. If not only for emotional support but possibly they can help you move and give you assistance along the way.
As you said it will only get worse and the longer you wait the harder a transition would be.
I praying that God give you blessing to handle these challenging days ahead. Wishing you the strength to get yourself in a better situation to help you through the days ahead.
I’ve always lived by the belief that we fight fight fight these things that we are faced with physically. Once you give into it then you have chosen your destiny. My mother was diagnosed with a rare for of cancer, they gave her 18 months. She fought everyday forcing her mind to tell her body I’m not letting you win. She got through five years fighting each day and amazed her doctors. Luckily we were there right beside her giving her the courage to face each day.
Take care and sending warm hugs your way!

So sorry to hear of your diagnosis. It makes me feel grateful to “only” have fibromyalgia.
Since you are by yourself, without support, you might want to investigate assisted living facilities near you. The one my Dad lived in had all kinds of activities, lots of friendly residents, and there was assistance there when he needed it. Put together your own support group. It’s something to think about.

2 Likes

Oh Freedom, I am so sorry to hear this. What a shock indeed. And that said, you DO belong here, as JC said. Every once in a while, it happens on our communities, that someone who is part of our group comes up with a new and unexpected diagnosis. They, as part of the support system here, are encouraged to stay. Please do: you need our support, you’re our friend, and we need the support that you give us.

You’re one of us, and you will be one of us as long as you want to be.

Big hugs for you. Hang in there. And hang out with us!

Seenie from ModSupport

2 Likes

Thank you everyone so much! :hugs::purple_heart: The GAD 65 AB blood test result was on Friday. My neurologist is contacting all my doctors, rheumatologist etc. and colleagues to discuss the next steps. And since it’s the weekend, I’m sure he will be doing this on Monday. My guess is that he will order an EMG and lumbar puncture before starting any treatment. When I read about SPS, I have almost every symptom. I am declining fairly rapidly and have been declining for 2 almost 3 year. I was diagnosed with “ fibromyalgia “ July 2018. But the last 1 1/2 years, I’ve really been getting worse. I saw my rheumatologist in March and asked her if any of her parents with Fibro ever ended up in a nursing home. She said no. Several months ago I thought to myself that if I keep on declining this fast, I won’t be able to care for myself. I knew in my heart that something wasn’t right. As for support from my family, that’s debatable. My almost 89 year old mother, who lives in another state, is most supportive. I can be real about my symptoms with her. My two sisters told me almost a year ago that they didn’t want me to talk to them, at all, about fibromyalgia. That was hard to take. It’s not that they don’t love me, it’s that they were losing sleep, having nightmares, stomach problems, increased blood pressure worrying about me. I texted them on Friday about my new diagnosis but haven’t heard from them. Oh, one sister did ask me a couple questions and said she was going to read more about it. I’ve heard nothing from my other sister. I have been single for about 11 years. I’ve dated a few people but nothing serious. Last Thursday, I met this super sweet guy who also has a chihuahua that he rescued, that lives in the apartment building across from me. He’s divorced and has two boys. We spent all day Saturday and then all day today together just talking about everything under the sun. We have a lot in common and share similar values. I told his I have SPS and had him read about it. We are just getting to know each other. I was in a lot of physical pain but the sun was out. The weather was beautiful. I will fight this stupid SPS. I’m open to investigative treatments. Thanks Seenie for what you said. You are all my Ben’s Friends family! Hugs to all!!!

1 Like

Hey Freedom,
When it comes to rare conditions receiving multiple diagnosis is not unusual, especially for conditions where a direct scan or test cannot pinpoint a specific condition ie if it’s not ‘X’ and it’s not ‘Y’ then it must be ‘Z’. I’ve been given more of these pseudo diagnosis than I can count on my fingers (and toes) over the years and every Dr seems to have their own diagnosis, opinion and treatment regime. Honestly, if I took them all on board as being true and correct I’d be more of a nutcase than I already am :crazy_face:.
Now, please, don’t get me wrong here, its not that I write off the medicos, far from it. I want and need their information, as I say ‘each has their own diagnosis, opinion and treatment regime’ and if just one of them could give me another avenue to investigate. I want to know. I have learnt that the one I reject could well be the key (or part thereof) that I’m hunting for and ALL of that information can be of benefit, even if that information is negative for a specific treatment, that is still of benefit to hear because then I can ask and investigate why.
Ben’s Friends is a network of many other patient communities, we have around 50 communities. You speak of “…treatments like IVIG, Plasmapheresis, Stem Cell , a specific chemo called rituximab…” These are treatments sometimes used for other conditions such as polyneuropathy. I know there are other members first hand accounts and experiences discussing these therapies on the polyneuropathy community pages Living with Polyneuropathy
It maybe worth investigating other conditions using these therapies.

Hope it helps
Merl from the Modsupport Team

1 Like

Thank you for your input. Last night, I was reading more about SPS. I didn’t see it list a low level of burning and tingling, that is still painful, that I experience every day as a symptom. It didn’t mention joint pain. It didn’t mention anything about the palms of your hands aching or the tops of your hands burning. I do have spasms and muscle rigidly at times. I’m going to have my neurologist explain to me, if I have SPS, why do I have these other symptoms too?

1 Like

This is a question definitely for the neurologist, and I might bring it up with my rheumatologist also. As you know, it is possible to have more than one condition. Burning and tingling are words that are typically some sort of nerve issue, so it may all well be part of the new diagnosis.

The other question is that since this is so rare, are you ultimately seeing the right neurologist? For example, I really like my neurologist, but I see him for neuropathy and migraines. If it was something more complex, I would probably at least seek a second opinion at NYU, as I live outside of the city.

Sharon from ModSupport

1 Like

Thank you Sharon, My neurologist consulted with a neurologist that specializes in SPS. Hopefully tomorrow I will receive a phone call to schedule an appointment with her. I’m trying to find out, via the internet, if you can have a false positive GAD 65 AB result. I definitely have several of the symptoms. But, like you mentioned, I have many other symptoms. If you only have SPS, you don’t have burning, tingling. I know it’s possible to have both. I messaged my current neurologist to ask if I for sure have SPS. He said he wanted the specialized neurologist to make the final decision.

I’m always relieved when one of my doctors either consults with or sends me to a specialist in the field. It shows that they acknowledge that they don’t know everything about everything, and are willing to work with patients. It sounds like you’re in really good hands.

Sharon

Freedom , I hope your new friendship helps ease the lack of support from your sisters, but no matter your diagnosis ( if they ruled out fibro. Or you have co existing conditions) you have “ fibro -family” right here . I hope your diagnosis allows you to get treatment that provides you with some relief of your pain and stiffness, and mostly I want to thank you for being an example of courage . Your positive attitude and desire to live your life to the fullest is inspiring. You state your circumstances as the facts they are and seem to look at your challenges as the next step down the road not a dead end street . You still find joy in the little things like sunshine. Thank you for your sharing your fears , and the purposeful attitude to make the best of your life. It encourages me to do the same. :blush::rainbow::purple_heart:

Thank you Jse123, I try hard to keep preserving but it’s definitely not easy. The hours that my body doesn’t hurt much are great!!! If what the first neurologist said is true, I will be spending my time differently. Then I asked myself, why not always have that mindset? If you knew, for example, that you had 6 months to live, would you change the way you “ do life”? Tomorrow morning, I’m having an MRI of my neck. Then in a week, I have a doctors appointment with a neurologist, who specializes in SPS, to confirm my diagnosis. I’m hoping there is a cancellation and I get to see her sooner. I think we are all warriors of our diagnosis and warriors of life. That does not mean we don’t have battle scars. But we do have each other. I have my Fibro family who cares so much about each other. Not very many people can say that. :hugs::hugs::hugs::hugs::hugs:

1 Like

With you there all the way :smiley:
In my first fibro-year I made it a habit to savour a minute or often one single second where I for some quirky reason had no pain, just joy, in the Here & Now.
And I nurture the mindset to savour my last year. - Mind you that’s not the first time in my life, in my teens I had the weird belief (not fear) I’d praps die when I am 25, so everything after that was/is grace. I may have experienced much more suffering than many others, but I have lived an interesting deep & full life, exciting in its own special way.
Mindfulness helps me enjoy life much deeper and gives me strength to improve what is possible, and persevere despite what is not. New diagnoses do need a time of sorrow and readjustment, but focusing on Being in the Here and Now as well as in Grace helps living that healthily to the full (instead of suppressing it or bogging down) which shortens that time. :pray: :four_leaf_clover: :sun_with_face: :sun_behind_small_cloud:

OMG, I am so very sorry to hear this news! I certainly have no place to be complaining about anything! We are ALWAYS here for you and if no one else will listen or talk about it, we WILL. With much love and very gentle hugs. Gramybear

Many people have differing issues , as well as fibro…i have always had the light and noise sensitivity, even as a child… i have what is called genetic fibro…my mother and an older sibling had it…my older sibling gave me zero support…she liked being in denial…if you do not talk about it…ts not there kkinda thing🤷🏻‍♀️…lol ok but i was a realist who is not that good at denial😂 i needed the support of talking it through, but only she mattered.

I was always grateful not to be without empathy ,as she was…
I actually feel others people pain almost too much…

Whatever they decide, prayer will get you through it…i will include you in prayer…especially for the drs…to take good care of you❤️

See new post about NOT having Stiff Person’s Syndrome. Freedom

Link added by ModSupport

1 Like

Freedom,
I am so incredibly sorry to hear about what you are going through. I can only imagine how you feel because while Moersch-Woltman Syndrome is similar to fibromyalgia in some ways, both have unique pathophysiology. Has anything helped to ease your pain? Gentle hugs to you, lovely.

Hi Dodi, I’ve been told by a neurologist that I don’t have it. Other labs are coming back abnormal. My plan is to go to the Mayo Clinic in Minnesota in a few months and have them check everything. I’m getting worse. More physical problems are occurring. I know if I go there they will give me a full work up.