Possible Stiff Person Syndrome

wolves2626

wolves2626

Messages
97
I was diagnosed with small fiber neuropathy after covid or the mrna vaccine. My burning and pain in my body( arms, legs, back, spine etc several body parts) matches the symptoms of it. However, I have got mobility issues too( problem with standing too long, could not walk more then 10 minutes etc. and muscle rigidity and spasms) that does not fit into possible small fiber neuropathy and started before covid or vaccine. A mater of 4-5 years lets say. However covid and vaccines came later on.

Could it be the stiff person syndrome? How could I get tested for it?

Could small fiber neuropathy affect my mobility and muscles? I used a short prednisone and it feels good however I had to stop because of it's side effects.

Could it be guillian barre syndrome? I also have long term chronic prostatits and reactive arthritis in the first onset of it.

I was also diagnosed with a small tarlovs cyst in right S1 sacrum. And I do not think that my arm pain and upper spine pain is from the cyst may be my legs and mobility and I am not sure of it.
I am loosing my mind , depressed most probably gone loose my job in the end and etc.

Need some insights may be some friends with stiff person or small fiber neuropathy will chime in and share thier opinions.
Thanks a lot.
 
H

hapl808

Senior Member
Messages
2,329
wolves2626 said:
Could it be the stiff person syndrome? How could I get tested for it?
Click to expand...

I don't believe there is a test, it's more a differential disorder based mostly on symptoms.

Personally, I have many symptoms of SPS, ME/CFS, GBS, etc. As most of these have minimal treatment options beyond maybe IVIG, at a certain point I stopped chasing a diagnosis as the testing was causing significant declines. My guess is SPS might be the best diagnosis for me, but before Celine Dion it was so unknown that even geneticists and neurologists were usually unfamiliar, and I also hadn't heard sound sensitivity and other more mental components.

I also found Myhill's description of 'allergic muscles' compelling, along with more mainstream Ehlers Danlos varietals. That said, Myhill is a bit controversial, but her site is where I first encountered that along with Stiff Person Syndrome.

Anyways, wish I had more help beyond that, but I have yet to find something that is largely beneficial.
 
wolves2626

wolves2626

Messages
97
hapl808 said:
I don't believe there is a test, it's more a differential disorder based mostly on symptoms.

Personally, I have many symptoms of SPS, ME/CFS, GBS, etc. As most of these have minimal treatment options beyond maybe IVIG, at a certain point I stopped chasing a diagnosis as the testing was causing significant declines. My guess is SPS might be the best diagnosis for me, but before Celine Dion it was so unknown that even geneticists and neurologists were usually unfamiliar, and I also hadn't heard sound sensitivity and other more mental components.

I also found Myhill's description of 'allergic muscles' compelling, along with more mainstream Ehlers Danlos varietals. That said, Myhill is a bit controversial, but her site is where I first encountered that along with Stiff Person Syndrome.

Anyways, wish I had more help beyond that, but I have yet to find something that is largely beneficial.
Click to expand...
thanks for the reply friend. I will keep chasing because otherwise I will loose my job in the end. mobility and pain is becoming worse by day. living in a 3rd word country without a wage is a huge problem. most likely I will not get any disability because of small fiber neuropathy only.
if a proper diagnosis of sps or gbs is made , ivig will be a possible treatment. if not I will be given only gabapentinoids which make me feel like 80 years old, opioids on the verge of addiction or steroids they ate innocent as hell .

I had to find a doctor a neurologist which is open to listen and new developments. however it is tough.

do you use any drugs supplements herbs for your condition? do you also have mobility and muscle issues? do you have a proper diagnosis?
 
H

hapl808

Senior Member
Messages
2,329
wolves2626 said:
do you use any drugs supplements herbs for your condition? do you also have mobility and muscle issues? do you have a proper diagnosis?
Click to expand...

I've used many things, but with minimal results. I can no longer walk without support and am mostly disabled. Various vague diagnoses, but nothing definitive.

Hard to find doctors that are open. I've gone through more than 25 in just the last 5-10 years. (Rheum, immuno, neuro, neuromuscular, ortho, naturopath, etc.)
 
Violeta

Violeta

Senior Member
Messages
3,166
@wolves2626 A friend's mother had SPS, she came down with it 5 years after a bought with Lyme disease which was treated with antibiotics.

It's very similar to Parkinson's. Parkinson's can be related to some way being manganese toxic. I asked my friend if her mother had some of the easy to distinguish signs of manganese toxicity, and she did.

It does look as though you may have some neurotransmitter problem causing orthostatic hypotension.

Do you mind if I ask you?

One of the symptoms is laughing or weeping uncontrollably.

Here's a list of the symptoms related to the extremities. (You don't have to have all of them.)

Extremities.--Muscular twitching. Cramps in calves. Stiffness in muscles of legs. Inflammation of bones and joints with insupportable nightly digging pains. Every part of body feels sore when touched. Cannot walk backwards without falling. Tending to fall forward. Walks stooping forward. Legs feel numb. Wilson's disease. Paralysis agitans. Peculiar slapping gait, walks on metacarpo-phalangeal joint; walks backwards. Ankles painful. Bones very sensitive. Shiny red swelling of joints. Knees pain and itch. Rheumatism of feet. Intolerable pain in skin of lower limbs. Burning spots about joints. Periosteal inflammation. Suppuration of skin around joints.
 
Last edited:
wolves2626

wolves2626

Messages
97
hapl808 said:
I've used many things, but with minimal results. I can no longer walk without support and am mostly disabled. Various vague diagnoses, but nothing definitive.

Hard to find doctors that are open. I've gone through more than 25 in just the last 5-10 years. (Rheum, immuno, neuro, neuromuscular, ortho, naturopath, etc.)
Click to expand...
I feel very sorry for people like us. At least we want to be appreciated in society. we are not fakers. all the dostors other people balame us for faking. Docs if they can nt solve the issue tell i t is pyschological.
 
wolves2626

wolves2626

Messages
97
Violeta said:
A friend's mother had SPS, she came down with it 5 years after a bought with Lyme disease which was treated with antibiotics.
Click to expand...

Well my story is somehow similar. I got prostatitis 8 years ago then health problems started. Nothing able to be cultured only cpn a little higher than normal value and cmv. Lately staph spp. was cultured however again dismissed by docs told it is flora members.

No orthostic hypotension: Problem with standing caused by mostly muscle weakness and rigidity. Incredible stiffness.
No I do not laugh or weep uncontrollably.

Violeta said:
Extremities.--Muscular twitching. Cramps in calves. Stiffness in muscles of legs. Inflammation of bones and joints with insupportable nightly digging pains. Every part of body feels sore when touched. Cannot walk backwards without falling. Tending to fall forward. Walks stooping forward. Legs feel numb. Wilson's disease. Paralysis agitans. Peculiar slapping gait, walks on metacarpo-phalangeal joint; walks backwards. Ankles painful. Bones very sensitive. Shiny red swelling of joints. Knees pain and itch. Rheumatism of feet. Intolerable pain in skin of lower limbs. Burning spots about joints. Periosteal inflammation. Suppuration of skin around joints.
Click to expand...

Well I have got a few of them. Not the most symptoms.
thank you.

Does anyone here some intolerances ? For example I can not tolerate magnesium ( tried different types), nac and msm ( sulphur intolorance may be)
 
H

hapl808

Senior Member
Messages
2,329
wolves2626 said:
forget to tell allergic muscles is a bullshit made up term.
Click to expand...

Well, most terms are made up, and any disorder where we don't understand the etiology is kind of made up by definition. Not saying 'allergic muscles' is accurate, but neither is Stiff Person Syndrome really anything particular, other than mostly a diagnosis of exclusion (I think along with some antibodies that are not definitive on their own, but part of the differential diagnosis process).
 
Violeta

Violeta

Senior Member
Messages
3,166
Stiff person syndrome pathogenesis

The etiology of SPS has an apparent autoimmune root, but its pathogenesis is not completely clear. It is generally associated with antibodies against glutamic acid decarboxylase (GAD) and antibodies against gephyrin, the glycine-alpha1 receptor, or gamma-aminobutyric acid (GABA) receptor-associated protein [3]

Lack of signals dependent on GABA causes rigidity and stiffness of the truncal muscles and increases sensitivity to touch or noise. Other autoimmune disorders can be diagnosed, such as Type 1 diabetes and Hashimoto’s thyroiditis, due to its autoimmune basis. In contrast, paraneoplastic SPS is generally linked to anti-amphiphysin antibodies and is associated with malignant tumors of the lung, thymus, breast, and lymphoma [3]

https://www.ncbi.nlm.nih.gov/pmc/ar...e etiology of SPS has,-associated protein [3].
 
M

Mouse girl

Senior Member
Messages
588
could be Lyme. Maybe see Lyme specialist. There is some guy in DC (I think) who is well known and helped a friend of mine go from being a bed ridden mess to working part time and driving around, works with animals. She still works on her health but man, the difference in her, it's amazing! Sorry I don't have the name but i'm sure someone here knows. there are a few good specialists on the East coast that seam to be very well known.
 
wolves2626

wolves2626

Messages
97
Mouse girl said:
could be Lyme. Maybe see Lyme specialist. There is some guy in DC (I think) who is well known and helped a friend of mine go from being a bed ridden mess to working part time and driving around, works with animals. She still works on her health but man, the difference in her, it's amazing! Sorry I don't have the name but i'm sure someone here knows. there are a few good specialists on the East coast that seam to be very well known.
Click to expand...

lyme test came negative many times. however, I suspect other infections. Actually I ssupect from many things arachnoiditis, tarlovs cyst, chlamydia pnemonia or fungal issues. Only definitive diagnose so far is small fiber neuropathy and chronic prostatitis for sure.

I am a bit far way from bedridden for now lets say. Walking 5-10 minutes depending on my muscle and weakness, can drive short distances.

Thank you for the suggestion.
 
Belbyr

Belbyr

Senior Member
Messages
602
Location
Memphis
That’s what I always thought about myself too. I’ve just learned I have LEMS, but I’m negative for the autoantibody that causes it. I wished I could understand why autoimmune testing is so bad to this day. Dr Brent Goodman at Mayo says he’s always retesting his patients on follow up visits because of how poor the testing is.
 
wolves2626

wolves2626

Messages
97
Belbyr said:
That’s what I always thought about myself too. I’ve just learned I have LEMS, but I’m negative for the autoantibody that causes it. I wished I could understand why autoimmune testing is so bad to this day. Dr Brent Goodman at Mayo says he’s always retesting his patients on follow up visits because of how poor the testing is.
Click to expand...
well at least you found the cause. Yes testing is bad. I have hla b27 positive. I am like other friend here seesng lots of doctors with unsatisfying results other than small fiber neuropathy. I think I a mgiving up and I am livinig in a country which has little opportunities and a uncapable health system for rare diseases.
Only thing they give me antidepressants for nerve pain, steroids short periods and opiods.

how yours was diagnosed?
 
Last edited:
You must log in or register to reply here.
Back