Tongue Cramp-Phase Questions

[pizzatana]

Hi,

I wonder if someone has experience with my latest "feature", which is / was a very ugly pain in the back of the tongue, that startet about 4 weeks ago, lastet for 2 days, diesapeared on the 3rd and since then reappears after a timespan of about 7 days but much weaker. No swallowing problems or so.

AFTER this tonge-"cramp"-phase I get some "inflamed spots" on the tongue, that hurt (they are visible). They go away after 1-3 days and I've known them for years but never cared until I told this to my doctor. [These things are called 'aphtes' here and can have many different causes].

Now the doctor sent me to a rheuma specialist, because with THIS tongue-stuff all the rest of my symptoms would fit together to a special, very rare auto-immune-disease.



Summary:

- Jan. 07 headache like hell + flu-like disease.
- Feb. 07 headache persists right-sided.
- Mar. 07 eyelid tickles.
- Apr. 07 left leg buzzing. Then calve left, then right, then both legs.
- May. 07 Legs getting easily tired. Single twitches everywhere sporadic.

Since then it remained at the same level of buzzing+twitching calves (can only fee it in rest) and sporadic twitching phases / single twitches everywhere else.

Anyway I was doing quite fine because everthing was checked by the neuro (MRI's, EMG's etc.) and because I read about this "benign" symptoms.

Now I am quite down again knowing that NOT everything has been excluded (as my neuro said). That sucks!

 

[rumzcaneconundrum]

What very rare auto immune disease is he thinking of. Can you be more specific

Then why all of a sudden is he looking at something else. Keep us posted, hope everything works out okay.

Terri

 

[pizzatana]

It is my family doctor who sent me, not the neuro (who made all examinations and is shure that it is nothing bad). She knows about the "thing" but she doen't know every detail like the neuro. First thing they ALL ask when I mentioned the tongue: "Swallowing problems?" which I don't have.

My family doctor told me she had one single case of a young man who had this disease (don't know how it's called) and had symptoms for years (not all the time but strong 'thrusts'), that were misinterpreted or not understood. But HE had that swallowing problem when he came first to her and they even brought him to a hospital. Then 12 years later she said "...hell broke lose!" without specifying what that meant. She said "you see one of those in a hundred years, it is very rare, but she'd like this to be excluded".

The heumatologist will do special blood tests and look for specific antibodies as well as genetic factors. First date with him is tuesday afternoon. We'll see.