Pretty scared. Another EMG upcoming

[ShiftKicker]

Hi there-\
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I know you are worried about ALS, but you have been given a diagnosis and are currently receiving treatment for that diagnosis. You are not even finished your full course of meds yet, but you are still insistent you have ALS. Please address any worries about your symptoms with your treating doctor and ask them when you should expect reduction or changes in symptoms and what your next course of treatment should be, should your current (and unfinished) treatment not elicit improvement.

 

[jab1023]

I spoke with a neurologist on JustAnswer, and he said early ALS couldn't be ruled out. He knows about the Lyme diagnosis, but I told him every muscle in my body has been twitching and it's not going away. He seemed a bit more optimistic when I said they did my worst limbs during the latest EMG. He ended by saying he thought it probably was just Lyme, but he also said at the start he didn't like talking about worst-case scenarios.:-(

It feels like this nightmare won't end any time soon. My doxy will be out this week.

I'm sorry to keep this up, but I'm not sure I'm finished being diagnosed yet. I see infectious disease tomorrow, so it's my chance to let them know I'm still nowhere close to normal.

 

[lgelb]

Oh, come on, a rando neuro on the Web properly says he can't dx you on line -- let's not go to pieces. What did you expect?

It is not at all unusual for recovery for Lyme treated late in the game to be delayed. There is some literature supporting a longer course of doxy in cases like yours, but obviously you should consult with the ID specialist.

But even if you come off abx, there are certainly ways to reduce prickles, tingles, aches and twitches, from massage/getting enough sleep to hot tubs to diet/stretching. The one method that never works is hunching over your phone or laptop while consulting people who can't examine you or help you.

I would still get a second opinion on the spine issues, as we always encourage when the stakes are high.

 

[jab1023]

^Thanks for replying.

It's tough, because even after today, questions continue. They are super unfamiliar with Lyme here. infectious disease doc said Lyme could cause all my symptoms, but maybe not. Recommended I finish my doxy and wait a few weeks to see if I keep improving. If I plateau, he said with a shrug, they can try to send me self-administered IV treatment.

I overheard him speaking with an assistant before he came in about how unreliable testing can be etc. He said something like he doesn't like saying no when Lyme patients are referred to him. Meanwhile the neurologist said it was the gold standard test. No one knows anything.

As many of you are aware, the continuous- non-answers are the worst part. It's like being trapped, every day.

 

[Atsugi]

Jab, it's past time for you to leave.
We are here for people with ALS, and people who might have ALS. You are neither.

 

[Lkaibel]

Jab, take Mike’s good advice. We give it to you straight here.

When I came here worried about my husband absolutely no one said not to worry or to go away. In fact someone asked if Brian was a Veteran (an ominous query). They hoped for us, but they knew and if you have seen this beast for real sometimes you don’t need an MD to know...

Oh and please no more web MD’s okay. I think a real time one who was a neuromuscular specialist would Jane said “nope” in a heartbeat.