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stvhck

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Hello All,

I posted a few times before and truly appreciate your advice and insight. For the sake of those who already know my situation...I will summarize my situation.

A little over one year ago, I suffered some kind of neurological phenomena associated with a vaccine. Symptoms are: 24x7 bi-lateral calf twitches, random muscle spasms (myoclonus), muscle "stiffness", and cramping widespread in my body at times. I have had a battery of blood tests, 3 EMGs (earlier this year 2011), and C Spine & L Spine MRIs...nothing conclusive, just autoimmune markers, minor positive sharp waves in lumbar paraspinal, and lumbar stenosis found on the MRI.

I am truly frustrated because I have these persistent symptoms yet no definitive diagnosis or medical insight. I avoid reading symptoms on Google but i do try to understand at a high level the possible cause(s) of nerve/muscle irritation.

My question(s) for the forum...what approach should I take with my doctor tomorrow to seek a diagnosis? Are there specific questions that others have asked on a second visit that might bring more clarity? Aside from an EMG are there additional test that I can request ( ex.antibodies against potassium channels in the body)?

I appreciate any and all feedback/advice. Thank you and God bless.

Steve
 
Steve it sounds like you have done all the right things. I think you just have to sit back and see how things go. I honestly don't think there is any other route to go. Many people have neurological symptoms following a vaccine or a virus, and usually time heals. Good diet and healthy lifestyle usually help i,e lots of rest and not strenuously exercising while healing. The only other referral that might reveal something is to a rheumatologist due your symptoms of muscle cramping, and stiffness. Take care.
Laurel
 
Is there anything debilitating about your current condition? Any loss of function or change in things over the past year? Why the need to "seek" a diagnosis if nothing is going beyond the "annoyance" level? Would a diagnosis of benign fasciculation syndrome meet your psychological needs, since that or something like that seems to be what you have?
 
Steve I would be interested in your feedback after the neuro visit, since my persistent symptoms (not ALS) are similar to yours. And, you appear to be a reasonable rational guy. Mine have persisted for years and I have accepted the diagnosis of BCFS. There are several options to help control the symptoms if that's what you are experiencing. (There are many types of BFS and BCFS and some fade with time, some are chronic, and some come and go. Mine, 25+ years, is chronic.) If this is what you have there is not a test to pick it up. That's why so many twitchers end up posting here and find it hard to accept that diagnosis. The tests rule out the nasty stuff.

Sounds like you are clear of ALS, which obviously is a great thing. Best wishes.
 
Steve, first is does not sound like ALS so rest easy.

Next, consider yourself lucky you have had all those tests so fast! Goodness gracious it took me 9 months to even see my first neuro or get my first MRI ordered.

Lastly, instead of asking the dr. about different tests go into with a pro-passive view by saying. You know my symptoms, and what tests I have done. What do you think? If they don't know, then ask what steps do we take from here? There is a good chance the dr. will say 'wait and see' which is annoying...I know...I have heard it more than I care to say...but take that advice and ask for a follow up appt. in 2 or 3 months. This way, the dr. knows that you care and are willing to hear their opinion and that you are serious about finding whats up. Hope this helps. Good luck.
 
Thank you all for taking the time to reply...I saw the neuro at Cedars Sinai in Los Angeles yesterday. As I mentioned, he is the co director of the ALS clinic for the hospital. The bottom line is that he assumes my symptoms are caused by the vaccine to some degree, however there is no way to really be sure. That being said, I am not someone who feels vaccines are bad...I just happened to have a bad experience.

The neuro suggested I could schedule a repeat EMG only if it would make me relax and feel confident that my symptoms are benign. It was his opinion that this was not needed at this time. He even went as far to say that I do not need to come back unless my symptoms change for the worse (but he would gladly see me if I decided to schedule a follow up).

I understand that weakness and atrophy are usually the hallmark sign of ALS...I guess my concern is the few examples you read about where someone has had spasms/twitching in the beginning and the weakness shows up years down the road. At this point I am confident that my neuro has my best interest in mind...and would want to monitor me closer if in fact he suspected a form of MND.

As many of you have suggested, I need to relax and grow comfortable with the "unknown" and the symtpoms I have at this point. It has only been a year of these symptoms and thankfully they have been static for several months now without getting worse.

I want to say again how much I appreciate your wisdom and advice and think it is incredible that you provide scared folks like myself with a sounding board to seek information and clarity. God bless.
 
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