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Leg Weakness and Mobility Issues

Autoimmune Diseases | Last Active: Jul 7 3:40pm | Replies (58)

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@cmmichaela

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!!

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Replies to "I'm so sorry to hear of all you are going through! This may not be relevant..."

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.