Tongue problems.

I didn't have a fasciculation on my tongue, but for a short time when I was checking for bulbar ALS, my tongue has some subtle movements - but not twitching - more worm like.

I haven't checked lately...but the NP at the J clinic looked at my tongue and never mentioned anything. (I can't remember if I told her about what I saw)


You're in treatment now...so try not to worry about the bulbar ALS. (I know it's easier said than done)

OriolCarol said...
You're right, Girlie. We have to be brave

My doctor told me not to stop the antibiotic, but he has decreased the dose. He wants to add plaquenil, he says it will help to modulate my immune system and it is also effective against borrelia ...

I am currently taking minocycline (300mg, but down to 200), rif (600mg) and artemisinin. I had to stop ceftriaxone because it hurt my stomach and I had diarrhea ...

I am afraid of adding plaquenil ... but he says it is safe and that it will help me.

What I don't like about the plaquenil is the long half - life - something like 50 hours.
So, after being on it for months...it will take a very long time after stopping for it to leave your system.

My first major lyme symptoms resembled panic attacks that sent me to the ER 5 times in one week, two by ambulance. Luckily, my liver enzymes were crazy high, so there was obviously something wrong, they just didn't know what it was. However, by the time I was back in the ER for the 3rd time, the Drs started to suggest it was anxiety or panic attacks causing my problems. I still get angry over how clueless the doctors were and how they treated me. I'm approaching my year 'anniversary' of the initial event that sent me to the ER.

During that first ER visit was when I started getting muscle twitching. I also had partial facial and possibly vocal cord paralysis, which also caused swallowing difficulties, add it all together and I really thought bulbur ALS was a possibility. I started examining my tongue for fasciculations, convinced I saw those too.

I completely empathize with you. I live by myself and when I was going through this, my dad flew out to stay with me. While we didn't sleep in the car near the hospital, every night I went to bed afraid I would wake to one of the episodes that would send me to the ER. It was a rough time. But hang in there. I felt as if the progress was really slow despite the fact that my dr said I was improving at a faster than normal rate. So expect a long road. Try not to be afraid. Lots of us have been there.