Leg Weakness and Mobility Issues

I'm so sorry to hear of all you are going through! This may not be relevant to your situation, but have you ever been tested for Celiac Disease? I have been through some similar things for the past twelve years. Six months after being hospitalized for a very bad mononucleosis infection, my legs became paralyzed after "overdoing it" on a short walk. To make a long story short, I have had episodes of paralysis, leg weakness and ataxia, arm nerve issues, an episode of sever hip joint pain etc for the past twelve years. I had been seen by endocrinologists, several neurologists, rheumatologists, physiatrists, etc... they tested me over and over for Lyme, MS, Lupus, etc and all tested normal. I never had digestive issues. I was finally tested by a GP hospitalist who listened to my story and knew enough to test me for Celiac Disease... I finally have a diagnosis. My daughter, who is seven yrs old, also has this disease. She had been seen by specialists since she was three because her legs would go through spurts of giving out on her... all of her tests came back normal, with only an elevated ANA. She was tested only because it is hereditary and she needed to be tested after my positive diagnoses. Thankful for her diagnosis! Celiac tends to pair with other autoimmune illnesses or familial autoimmune illnesses such as Hashimotos, Diabetes etc. (especially if diagnosed at an older age). I really feel that there are not enough doctors who are aware of all of the symptoms (and lack thereof) that Celiac can cause... I wish that it would be more broadly tested for. It is thought that 50% of people who have this disease are undiagnosed or misdiagnosed. I have been gluten free now, since January and am wondering if I'm seeing some improvement.... I have been using a wheelchair while outside of my house since August 2023. My energy is limited and my legs hurt if I overdo it. If you think you should be tested, do not go gluten free before having the blood work to test for this!! You need gluten in your system to be tested accurately. If your tests come back positive for gluten sensitivity, they will likely do an endoscopy and small intestine biopsy to confirm the diagnosis. My small intestine is severely damaged.... And I had no digestive issues. I do feel that stress on the body and viral infections can trigger the symptoms of Celiac as they had in myself. My GI had not seen this presentation of Celiac, but recommended that I read "Celiac Disease: A Hidden Epidemic" written by Dr. Peter Green. It was there that I learned that there are over 200 non-digestive symptoms of Celiac Disease... including leg weakness and paralysis. Anyway, I hope that you might find this helpful and that you find answers and start feeling better very soon!!

Several things stand out in your story. Did you have a Covid test done with the bad cold in Jan? Covid infection can trigger autoimmune disorders. One that fits with your symptoms is CIDP mentioned earlier. It affects the nerves primarily and muscles secondarily. Your positive ANA should not be disregarded considering your symptoms! It shows a potential link to AI diseases and should be repeated and explored further. A better test than the standard tests is the Avise CTD (connective tissue disease) blood test. I would ask rheumatologist for that. Myositis is also a possibility, an inflammatory disease of the muscles. Muscle enzymes should be measured in blood (CK, ALDOLASE,ALT, AST, LDH) and if any are elevated a myositis panel should be run.
The good news is that MS and lumbar disc disease has been ruled out. The elimination process is helpful at getting to an answer. There are special Drs that are neuromuscular docs and that’s who you need. The university or special clinic systems recommended by others is your best bet to find one. In the meantime do keep up with PT, as it will preserve the function you have and help improve it. I would leave no stone unturned in getting a diagnosis as early intervention is key to prognosis and recovery! Good luck and keep us posted please!

I'm so sorry that you are going through this. 23 years old is way too young to have to deal with this. Have you considered that your cold was maybe the Covid virus? I have had the virus 3 times now and each time my neurological issues seem to worsen. I wish I could tell you that my symptoms are getting better, but they're not. Keep pushing the issue to find out what is causing your symptoms. Have you considered being tested for Lyme Disease? It can bring on neurological issues. I'm so sorry, I know what you are going thru. It's very frustrating.

Sorry. it's CIDP (chronic Inflammatory Demyeliting Polyneuropathy.

Thank you for your response:) My B12 range was okay (425 and the normal range is 230-1,050), but maybe I should start taking it cause it can't hurt. I have had CBC checked a few times over the past months, and nothing stands out just a little high for RBC and hemoglobin. Iron is normal but on lower end. Frustrating since I'd think with my extreme symptoms it would reflect in my bloodwork, but all tests are coming back normal. I try to stay consistent with PT, but sometimes it leaves me more sore and wiped out than before. It really is a delicate dance, and even more tough when no one knows what's going on.

Thanks for your comment! I'm sorry you have been dealing with chronic pain and similar symptoms. I looked it up and I think mine is not that since my EMG and MRIs came out normal/clean, and they wouldn't have if I had CIDP.

I wish I got tested for covid when I had that bad cold because I have heard crazy things that long covid can do. Unfortunately, I didn't get tested back then, so I will never know. I did get a whole autoimmune bloodwork panel, and Lyme markers were negative. So did everything else. So frustrating, as I'd think with all my symptoms there would be positive/abnormal bloodwork results. It's gotten to the point where I've really done pretty much every test in the book, so not sure what else I can test for.

I wish I got tested for covid in January but I didn't because I figured it was just a bad cold. When I get sick, I always am hit hard, so figured it was no different. I looked into CIDP and I don't think it is that because an EMG and MRIs diagnose that, and I had both and they were normal/clean results. Thanks for sharing the Avise CTD, I haven't heard of that before but will research. My rheumatologist said myositis is unlikely, especially since my bloodwork for CK, aldolase, etc came back low/normal. Yes, maybe I need to try to find a new doctor or cold email various renowned institutions and see if anyone is passionate enough/interested in researching my case. I try to keep up with PT, but it leaves me more sore/wiped out after for a couple days after, so it really is a delicate dance with not overdoing it but also trying to build strength. It's ironic since a workout arguably set this all off, yet I'm working out to try to get better. I can do more reps/exercises than when I first got there, so I guess it must be doing something.

Thank you for your response! Interesting, I have wondered if diet somehow plays a role in this since I am not the healthiest eater, but I figured it'd be weird it would happen so suddenly after a workout/anxiety/a cold. I have not thought of Celiac disease since I have never had digestive issues, stomach pain, etc, but I will mention it to my rheumatologist.
I relate to how your energy is limited/legs hurt if you overdo it. I try to keep up with PT, but it leaves me more sore/wiped out after for a couple days after, so it really is a delicate dance with not overdoing it but also trying to build strength. It's ironic since a workout arguably set this all off, yet I'm working out to try to get better. I can do more reps/exercises than when I first got there, so I guess it must be doing something.
May I ask have you tried to gradually walk more/stand more? Curious if the lack of use of the legs somehow contributes to it. I'm torn between wanting to try to do more but scared it's going to set me back to square one.

I have never gotten tested for mono or chickenpox sinceI've never had symptoms for those. Same with covid, never had it to my knowledge but I do wonder if my bad cold in January was actually covid and I just didn't know since I didn't get tested. I was told I could get a cervical and thoracic MRI, but since my brain and lumbar were normal/clean, those probably would be too and not show abnormalities like lesions that would indicate MS. I looked up CIDP but don't think it is that since EMG is something that diagnoses it and mine was normal results.