Muscle Weakness - Guillain Barre or other condition?

Posted by Alta Net @altabiznet, Jun 8 2:06pm

I have muscle weakness in both upper and lower extremities. Currently, it is the main cause of my disability. I have a diagnosis of systemic sclerosis or scleroderma, which is known to cause muscle weakness and fatigue. But this weakness started abruptly right post chemotherapy for autologous stem cell transplant for scleroderma, about 15 months ago. It started with not being able to lift my arms and do things, and recently it progressed to my legs and feet - walking with a cane. I am also losing my muscle volume.
This looks like Guillaine Barre that started post-chemo. I am on Humira for inflammatory arthritis and on Mycophenolate for scleroderma, but with very little improvement.
No specific autoimmune neuropathy was found on the panel of autoimmune paraneoplastic blood tests.

Does anyone have a similar problem? What was the treatment?

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cmmichaela | @cmmichaela | Jun 9 6:54am

I am so sorry to hear of all you have been and are going through! I am not sure if my experience could be of any help but I did have some similar symptoms with sudden leg weakness and then arm weakness (and quickly moving into paralysis) that was reminiscent of someone who had Guilliane Barre (I had been tested but was negative).

I wonder, especially because you mention suffering from autoimmune challenges, if being checked for gluten sensitivity and Celiac Disease could be something to look into, if you haven't already.

My symptoms were a very uncommon manifestation of Celiac Disease and it took twelve years of on/off bouts of episodes of paralysis (and then I developed other symptoms of severe muscle stiffness symptoms as a result of inflammation in the brain that had not been addressed and required not only a gluten free diet but also a low glutamate diet).

Celiac tends to run with other autoimmune diseases and does not always cause GI symptoms. It can attack any part of the body and cause any symptoms. About half of people with Celiac are not diagnosed, as their symptoms do not match the classic GI symptoms, but instead are either "silent" or have manifested in the attack of another part of the body.

My initial symptoms of leg paralysis that moved to arm weakness and delays in my ability to move them (though not true paralysis of my arms) began after being hospitalized for a severe mono (Epstein-Barr) infection. I had thyroid Hashimotos and papillary thyroid cancer. Many doctors do not test for Celiac disease with such symptoms, especially if you are not suffering from GI symptoms. High-dose methylprednisolone knocked me out of paralysis... But a full recovery took about a month each time this happened.

Testing for gluten sensitivity and Celiac Disease begins with a blood test. You need to be eating a gluten containing diet for at least three months (equivalent of a slice of bread) to have accurate testing. If something in any of these tests is off, an endoscopy with small intestine biopsy will follow to diagnose Celiac Disease.

It is important to be tested before just "trying to go gluten free" because the level of "gluten free" you need to be for someone who is only intolerant vs Celiac Disease will be very different. Healing from Celiac Disease requires (for example) not eating food that has been prepared on the same scratched cutting board that has ever touched gluten... Cleaning/scrubbing the cutting board is not enough to make it clean enough for someone with Celiac Disease. The steps you have to go through to eat are very challenging. Most people with gluten intolerance can eat food that has been prepared in the vicinity of gluten-- with Celiac you really should not as exposure can cause intestinal damage and systemic inflammation (and for many, ingestion of a single crumb after starting a gluten free diet will make you very sick). So, testing is helpful to know the level of gluten free you need to be so that your body can heal.

Here is the Gluten Sensitivity/Celiac Serology to ask for:

1. IgA antibody
2. Antigliadin Antibody IgG
3. Antigliadin Antibody IgA
4. Tissue Transglutaminase Antibody
5. Immunoglobulin A level

By the time I was diagnosed with Celiac I had developed symptoms of severe leg stiffness (that eventually moved into my arms). I was able to walk, but very only very stiffly and with a strange, hunched gait. I used a wheelchair out of my home for two years. My doctors had hoped that a gluten free diet would help but, unfortunately, my symptoms only worsened. It is a long story... But quite miraculously, in my research I found an article that pointed to a neurological manifestation of Celiac and glutamate sensitivity. After consuming a low glutamate diet for two weeks I was able to not only walk, but I was able to run! (I got my legs back April 11, 2025) (Glutamate is an amino acid in foods and also in the body... and also the most abundant neurotransmitter in the brain. It is found in elevated levels with anyone with a neurodegenerative disease.) I am throwing that in this note to you in case that information could ever be helpful to you. This is not to say that glutamate is bad... But for a person with sensitivity, excessive amounts can be. I am a firm believer that a diet tailored to our body's unique nutritional needs can be instrumental in our healing journey.

For reference, I am now a 43 year old homeschool mom.

Again, I am so sorry for all you are going through. It is so difficult to go through such physical challenges without having any answers. Again, I don't know if any of this could pertain to your situation but thought I would share in case it could be. I hope you find answers and relief from your symptoms very soon!