Ok, I have a strange symptom, and I'm curious if anyone else has this, or has any idea.. No google search is even bringing anything up!

I have been getting IVIG for 3.5 years for my weakness (LEMS high on list), but no definite diagnoses besides "Autoimmune syndrome, and non length dependent SFN). Anyhow I noticed a while back if I use my tongue (like press it against my cheek) for a while, it will feel fatigued and when I look at it, it actually turns purple and splotchy.. All my muscles get that overwhelming fatigue with use (just like my tongue).. so I wonder if they also are doing this.

I have head my heart checked out and it's fine.. My pulse ox is always fine (except when I totally crashed 3.5 years ago). So I don't think its cardiac related.. Any thoughts - does this happen to yall? is that normal for fatigued muscles?

It implies a circulatory issue of some kind. Have you called your doctor? If it's a localized issue, it might not show up on the O2, ECG, or any heart check.

I hope you can figure it out.

Annie

Thanks Annie.. It's been happening all these years, but used to seem milder.. they aren't sure.. (of course- i'm still a mystery), But I think that just has to be a clue with all of this.. My tongue when this happens (only with exertion of it), feels just like the rest of my muscles with exertion.. I have wondered if a vasculitis would show up like that? all of my esr/sed rates are always negative.. but I know that doesn't necessarily mean anything. It's like my muscles aren't utilizing the oxygen .. are there conditions that do that generalized that your aware of?

I'm still thinking back to your immunoglobulins and if they are still abnormal.

I can't remember—don't you have a clotting disorder? It might be worthwhile to see a hematologist to ask their opinion.

Have you brought this up to an internist?

I'm too tired to wrack my brain right now.

Annie

Thanks Annie! Yes, I have MTHFR.. and a lot of vitamin deficiencies as well.. and my ANA is always pretty high too.. I take my vitamin supplements, baby aspirin and all.. but your right - My WBC count gets low at times too.. so seeing a hematologist might not be a bad idea..
Isn't there a disorder - cryoglobenemia (sp?), they tested me for that but it was negative as well.. I wondered if that test can be a false negative... I haven't mentioned it to my internist.. I will though next time I head in there.. I feel like everyone thinks this is all a big mystery, and don't really feel like investigating too much further..

Hello, I'm new here. I have come because I have developed symptoms that my neuro and opalmologist suggested testing for MG. I wanted to answer your question about cryoglobulonemia testing, because I have cryo (that's what we call it for short). Testing is VERY often false negative with cryo, and that is because it requires very special handling that so few labs know how to do correctly, and even if they do, even a sloppy technician can mess it up. Many people with severe cryo test negatively. Further the quantitive test has no bearing on how severe your cryo may be - a person with a high cryo reading may have few symptoms, while someone that tests just borderline may be very symptomatic.

Regarding your blue tongue, I get blue around my mouth, and I assume it is to do with my cryo. But I'm also having trouble with a 'heavy chest' or truble breathing. Typical symptoms for cryo tend to be fatigue, neuralgia (especially starting in the hands and feet), and often a purpuric rash on the legs. There are many more symptoms too. It is worth looking into if you are experiencing fatigue or other odd symptoms. There are also other kinds of vasculitis.

thank you so much Sandrine!! I had no idea the testing wasn't very sensitive.. I might have to look more into it.. there are many times where I notice my extremities have a purple tinge to them as well, especially compared to other people... again, my pulse ox is always good (except when I completly crashed in the hospital almost 4 years ago. What do you do to treat/manage your symptoms ?

The purple tinge is typically raynauds, and I suppose you can get it in your tongue too. It is probably really what causes my lip to go blue. So, really a secondary thing to cryo - something many cryo people have. Treatment is immune suppression if your symptoms are bad enough. This would normally be nerve damage, kidney damage, purpura, extreme fatigue, weight loss, but they vary greatly. Rituxan seems to be the drug of choice.

I posted a question here yesterday, and it still hasn't been answered. Is this a really quiet forum? Do you know if there is somewhere else to get answers on MG? I was hoping for more of an active place.

The purple tongue may be methemoglobulinemia:

http://dpic.org/article/professional...-medications-z

This link has a list of medications that can cause the bluish coloration.

Thanks for the info on methemoglobinemia MrsD. I've been blue around the mouth and finding it hard to breathe for some time now, and haven't really had answers for it that make sense. This is something to look into perhaps. Only thing is that the blue color for me is just above my upper lip, and sometimes my lips, and nowhere else. I get raynauds, but that is cold induced. I take a medicine that contains acetaminophen which can induce it, but aside from that I have no idea why I might have it though.