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IBM Anti-cN-1A (NT5c1A): 5x Normal
I posted this a while back but I put it in the wrong forum and couldn’t transfer it so figured I would create a new thread.
After many years of searching for an explanation for my muscle myopathies, bulbar weakness, muscle fatiguability / tightness / cramping, difficulty swallowing, etc with little meaningful findings other than being positive for the MTHFR gene (with normal homocysteine), I was just found to be positive for Anti-cN-1A (NT5c1A) which the literature says is highly specific for Inclusive Body Myositis (IBM) and its subtypes.
However, my symptoms go back at least 30 years and they have not hindered me significantly with the exception of two gradual onset but extremely debilitating flares, each of which took me many months to recover from.
My baseline has diminished over the past several years but the condition still does not significantly hinder me, but my legs are getting weaker.
Despite being “strongly positive” for NT5c1A, and despite my symptoms being a fairly perfect match for IBM (my forearms and calves are the worst muscle groups), I’ve been told my pattern is not a typical for IBM as most end up being wheelchair bound within 10 years. My symptoms date back 30 years with the typical insidious slow worsening which is typical of IBM but apparently it’s not as severe as most IBM sufferers. A muscle biopsy is the next step and I’m trying to get a consult at Mayo.
For folks dealing with IBM or any of its subtypes, has anyone had the condition for more than 10 yrs who are not wheelchair bound?
Has anyone tested positive for Anti-cN-1A (NT5c1A) that was diagnosed with anything other than IBM?
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Hello! I just saw your comment and I also tested positive for this as well, but I also had high AAG markers. They just did a special test EMG/test on me, but that did not match up to IBM. I have a ton of Autonomic symptoms too. No tears, saliva, mucus, etc. I did research and saw that this specific test when positive can also be signs of NeuroSjogren's, Lupus, other Autoimmune and even Long Covid. I had a strong iron infusion for years of Anemia and I think I picked up covid at the same time and it was basically like my body had some type of Autonomic crash. All my Autonomic functions stopped working and all my muscles and nerves were attacked. I have a weak trunk, but stronger arms and legs. I like you have had strange symptoms since my 20s though like upper arm weakness with repetitive arm movements. So I would have to take breaks drying my hair, scrubbing, etc. Also severe bleeding gums with not one single cavity. I have thyroid disease so I always assumed that was the cause of all of my issues. We have Sjogrens and a ton of Lupus in my Family. I was checked for Myasthenia Gravis and a few other diseases, but everything came back normal. I did see that there is a seronegative Limb girdle Myasthenia Gravis though. I feel like I have a Neuromuscular Junction disorder with an overlapping Autoimmune Autonomic disease. Do you happen to have speech fatigue that gets better if you take a break? I also believe I have Small Fiber Neuropathy because I have the pins and needles in my feet and hands and complete internal torso numbness. I have been seeing that sympton on the Long Covid sites. I have been searching for years for answers too. It is so frustrating. I have the positive ANA, the high AGG test, positive IBM test, abnormal Schirmer’s eye test and a few other things, but nothing concrete. My CK levels are normal and so are my EMG's. I have not had a small fiber neuropathy test yet though. My whole torso was completely attacked. I am not sure if you have any of my symptoms, but from the research I have done NeuroSjogrens looks like it is just as bad as Lupus or maybe worse and can cause very bizarre symptoms.
Sorry to hear you’re going through this. I do occasionally get speech fatigue that can progress to slurring. It doesn’t happen often and I can usually compensate before anyone notices but it does happen. I’m also seronegative for MG and I’ve had a negative SFEMG but I’m still not completely convinced it can’t be MG. My SFEMG was done on muscles I do not have any issues with.
I haven’t looked into neuroSjogrens so thank you for mentioning that. I do have memory issues and that’s not common with most other autoimmune or neuromuscular conditions.
The only thing that’s helped me is supplements. I essentially take my own mito cocktail. A mito disorder is suspected in me (I have T1D but no T1D antibodies), but a full Exhome panel didn’t find anything. The supps are almost certainly not addressing any root causes, but they have gradually helped me to recover from my last flare.
Regarding bleeding gums that can also be caused by nutritional deficiencies, particularly Vitamin C. Some of the diseases/disorders you mention can cause issues with your body extracting nutrients regardless of how well you eat. If you haven’t had your vitamin levels checked you might want to look into that. I’m chronically low on B1, B12, D and even protein, despite eating well. And keep in mind serum levels of nutrients from blood tests can be misleading if you have GI malabsorption issues. A borderline low serum level is usually nothing to be too concerned with, but in the presence of malabsorption issues it can translate to significantly low levels in body tissue.
I hope you figure things out and find some answers.