Twitching & Princess Bride: Update

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seadragonsovereign

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Anyone who has seen the Princess Bride will understand that subject.Just an update for what its worth. My neuro put me on dilantin to try and calm the twitching. It had no effect whatsover and actually made my hands shake (which of course made the situation worse). He took me off it immediately. My EMG/NCT was last week and though the EMG was clean (I think), the NCT showed some abnormalites.So, now he had me do more blood work for about 20 other things, including lyme disease. He said he is just trying to be thorough and rule out everything it might be. He again says he doesn't think there is anything to worry about, but seems to have not completely ruled out ALS, though he says otherwise. He is also setting me up for a lumbar test (anyone out there have this?). And he wants me to get a second opinion with the Ohio State neuro group. So while he seems to think that I shouldn't worry, the symptoms continue to multiply on me. I have been getting twitches and limb jerks were I had never gotten them before. Is this normal? Does it eventually get to a "steady state" level? I mean, I don't have too many muscles left to add to this list. Mornings are the worst. It (anxiety) gets better as the day progresses.Of course my panic and anxiety is through the roof, despite the logic against this being A freakin' LS. Took two xanax yesterday to get through (it helps). I don't want to overmedicate, but maybe that's the way to go until I can get a few months to pass and lessen the chances that it is something worse. It feels like I'm losing control, both physically and mentally. I am still running/working out every day and it SEEMS like there isn't any loss of strength, but who knows? I don't see how the "old timers" here made it through, but it is heartening that I'm not alone in this.
 
I don't think that means what you think it means. :D) I understand what you are saying. My neuro was less than comforting at our first visit too. I came away feeling worse than ever. After my EMG (6 weeks later!) she was much more reassuring. I also have been experiencing more myoclonic jerks lately. They happen most often in the evening when I am sitting still. Did your neuro say anything about those? They are making me nervous although I realize that is not quite rational. (Enough about you, how about me, right!) Anyway--I think your neuro is being extra cautious. As I said before, the EMG is the real test. You really are fine!Becky
 
I had all the blood work as well. Hep, CPK levels etc. etc. They are trying to rule everything out. The lumbar sucks, never had it, but I know it sucks. I guess they just want to be very very thourough. The good news is you can take your xanax and wait for the results. When they come back fine, you will be able to relax more. It won't take the symptoms away, but knowing you are not dying is a good thing. I can tell you ALS is not your problem, even if you have something (which most likley you don't) it's not ALS.
 
Myclonic jerks are also part of anxiety. At least that is what my neuro says. I only get them as I am drifting off to sleep, but it's all the same.
 
I had a lumber puncture, EMG, NCV test, and muscle biopsy all on the same day in October 08. Everything was normal except the NCV test on the sensory nerves and the muscle biopsy. The lumber puncture test may implicate an inflammatory/autoimmune process but if it is normal it still does not rule it out. Mine was normal but other blood tests pointed to immune problems. Ask your neuro if he is doing a raji cell test or other test for immune complexes. This was the main test that has showed a continual immune inflammatory process with me and the first three neuros I saw did not order one.The lumber puncture was not painful when it was happening but I had to lay flat for several hours afterwards so the fluid would not leak out and cause an imbalance leading to a nasty headache. The nurse told me most people get the headache a day or so later not the same day. This was true for me. The headache kicked in a day or so later while I was driving home. It was the worst headache I ever had. I could only get relief by reclining my chair all the way back at stop lights and squinting so I could just see when the light changed. I'm sure other drivers thought I was crazy. I grabbed a darvocet (mix of narcotic and tylenol) and within 45 minutes or so the headache was totally gone. So if they offer you a strong pain killer (even just one or two tablets) I would keep them nearby just in case.I have never tried Xanax for the twitching but Ativan and Klonopin both worked. Klonopin works much better than Ativan. All three of these drugs are in the same class. I am thinking about trying neurontin/gabapentin (sp?) given the few reports I've read of others having good success with it expecially the new poster who is a med student.If it helps, I am leading a great quality of life now a year after all this. I just finished an hour of weights and aerobics and am getting stronger every day despite all the twitching and nerve problems.Krackersones
 
The blood work came back already. All clear for whatever was tested. I guess that's a good thing. I also found out that the lumbar test is actually going to be an MRI of the lumbar. Scheduled for next week.
 
It is interesting that you are having an MRI of the lumber. I specifically asked for one on my last neuro visist and he is referring me to an ortho first who I guess will then decide whether to do an MRI. I have some stiffness/soreness in that area and also some nodules there too. The nodules have been there for many years without change and before all the twitching. Every doc I've asked about them says that can't be lymph nodes because they are too superficial and you don't have lymph node there that you can feel that easily. The lymph node issue was my big concern initially. However, now that I have read about demyelinating neuropathy I know there are cases where the lumber nerves get enlarged from constantly being damaged and repaired (which the docs say is happening in my feet; it took four neuros to notice this by the way) and this can show up on an MRI. It is not a sign of ALS but rather a much less serious type of neuropathy. I wonder if the nodules are related to this type of process even though my neuro seemed to think it far fetched. Since an MRI involves almost no risk and no radiation, I figure I might as well run this avenue down too.Krackersones
 
deadpirateroberts - it would be good to get a copy of your test results (hold a copy), right now I can see that this loss of info has become a problem in that my main doc has not received some of the tests so can't follow through. Krackersones - mri's are pretty expensive - one reason to consider holding off. Guess it depends on what is under investigation - for the spine my rhemy did x-rays and his trained eyes found some culprits (fast and cheap in comparison to mri's). What was weird about this is, by the time I saw the rhemy I had been to several neuros and nobody had done any x-rays which can tell a lot about past injury, & misalignment and deposits that can cause nerve problems/irritations. Different perspectives, I know, but you'd think they could confer.All of this is so after the fact - how would we ever know if disc or spine problems caused the pnhe or the other way around? Guess it doesn't matter because, regardless, here we are . . . . .
 
Yeah I had some xrays as well. I had some problems with c-5 or c-6 can't remember. Degenerative disk deisease. But that is from training so much I know. The doctor also said not responsible for twitching. It can cause the tingling and stuff, shocks etc.
 
ImOk, MRIs are indeed expensive. I've paid a portion of a few over the years and even my portion was a lot. I'm only going to do it this time if my HMO portion of my benefits approves. If they approve it, it is free. My brain MRI was free so maybe this one will be too. We have such a messed up medical system here in the US.Krackersones
 

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