Visiting a Neuromuscular Specialist

[seadragonsovereign]

I finally got to get in to see my second neuro (being referred by a first neuro who didn't really give me a dx, but thought it was benign yet still referred me to a specialist specialist-neuromuscular-read earlier posts about this if you want) a couple of weeks ago. He's (Dr. Kissel) a dept head at Ohio State and written books on diagnosing patients, so his word would be a little stronger than the first neuro, in theory. Anyway, I actually got to see THREE nuerologists in the space of about 4 days. The first was an associate (at first it kind of bugged me that I wasn't actually seeing Dr. Kissel) of Kissel's who, although he had a history from before and all the original lab & EKG/NCT results, got another complete history and did all the neuro tests (pushing, pulling, jabbing, tapping, rolling, eye checks, making me walk, stand on tippy toes, touch my nose with eyes closed etc etc). Then he left and came back a few minutes later with Dr. Kissel who did some more tests and we talked at length about it. He was very open and seemingly caring. He even asked if I was more concerned that I was twitching or that there was some big baddie causing it. I told him that it was mostly the latter, but the former was no picnic either. Neither of them, though, were really interested in actually looking at the twitches themselves. Curious to me, though I did show a hand twitch to the associate who did show a little enthusiasm about it. Dr. Kissel definitely ruled out ALS and Parkinson's and MS. I asked him a bunch of questions (many of which were gleaned form other's experiencing on this site - thank you all!). Then they gave me their diagnosis: benign cramp-fasciculation syndrome! ) ) ) The cramping part because I do get cramps in my feet, mostly hours after a good run or workout. I asked him about doing a brain MRI (partly because of stupid internet and partly because I am already maxed out on insurance and it would essentially be free) and he said he would but there was no real medical reason to do so. He said it wasn't that the brain was sending out bad signals, it was that the issue was at the nerve endings (not the source or the pathway).BUT: they wanted to do a couple more blood tests and another EMG and NCT. So, yet another neuro ran the EMG/NCT tests and found minor abnormaliies in one leg nerve and in my hand (they did right side this time - last time was left side). This neuro said it was probably nothing to worry about (he traced the nerve back up to the spine and found no issues). TIme passed, but after not hearing anything back after a couple of weeks, I emailed Dr. Kissel (he gave me his business card with address on it) and he responded (amazing!). He's not worried about the EMG/NCT findings at all, one of the two blood tests (paraneoplastic syndrome - something to do with cancer) came out fine and the other showed elevated levels of CK, which is is not worried about either given my exercising background. So, while I did get the BCFS diagnosis I was hoping for, everything is not completely truly fine, but I guess if one has BCFS, one is not really truly fine. I go back in 3 months. If nothing changes, they want to discuss other treatment options if I want to pursue them. For now they said to stay on the Klonpin.Just wanted to pass on the news to everyone. Today I was more worried about my Nittany Lions (I went to Penn State) getting beat by the Buckeyes than I was about the twitching, so maybe that's progress . Good luck to everyone in their battles. FYI, this is my seventh month of twitching and am looking ahead to one year.

 

[Krackersones]

Thanks for sharing your positive report. It is even better that your neuro is a neuromuscular specialist. I believe this does make a difference when dealing with muscle twitching. Did Dr. Kissell share any thoughts on what he thinks causes BFS or what treatments he has used successfully in other patients? You mentioned that he might want to discuss treatment options later so I assume he has tried some. I find it reassuring that he thinks Klonopin is a reasonable way to deal with the symptoms since this is what the neuro I see has me doing and I think it works great. Were your minor abnormalities found on the EMG or NCV test? I am sure others with minor abnormalities will find it reassuring that they are not always worrisome. I find the description of your visit to also be similar to mine in that I also had a visible hand twitch to show off that was looked at with interest but not as if it was totally diagnostic or anything. Also, the neuro did not really want to look me over for twitches nor did he seem interested in my precise descriptions of them.I hope things coast along smoothly from here on out. I have been at this for 16 months and once the symptoms were managed with the Klonopin and I felt like I did the reasonable testing thing, time flew by a lot faster.Krackersones

 

[BarbiePetals]

So you had the VGKC antiobody test? This is the one thing I think I want to ask about next time I visit my neurologist. It's the only thing I have not been tested for and it scares me a bit.

 

[seadragonsovereign]

Barbie,The test was shown as "paraneoplastic syndrome" on the lab sheet, but the doc said it was for a check on the nervous system and possible cancer. I guess in some cancers, nerve cells are attacked by antibodies/white blood cells and this may cause twitching, etc. Here's a good site for a description: . I don't think it is the exact same test as you mention, but is similar (). In any event, it was clean for me.JRO,The abnormalities were found in both the NCT and EMG test at the same location in my leg. Only in the NCT test did the hand issue show up, but I already knew I had minor carpal tunnel so that was expected by me. I can send you a pdf of the results if you are interested. PM me and I will. As to meds, they said that if the Klonopin is working, then keep at it. I didn't ask what other meds they would try, but I think they wanted to wait until after the results came back before discussing anything else. They knew from previous neuro records that I had tried dilantin and neurontin to no effect. Since Klonopin works a bit for me (doesn't get rid of it, but knocks it down some), I didn't press that issue. He didn't talk about other patients with BFS, but seemed to know quite a bit about it - even mentioning the Mayo clinic study (that we have posted somewhere on this site) and noone with BFS eventually coming up with something bad. Mike

 

[hypomanicgirl]

Mike,Thanks for sharing your results with us - it sounds like there is nothing else but some minor findings. I suspect these findings are very common and related to overuse and wear and tear. Congratulations are in order! I can relate to the difficulty with the long waiting time - I'm still in that boat and use this board to keep myself grounded and sane. Kat

 

[AllGoodHere]

Congrats on your findings of no serious illness. However, this all sounds so familiar - hey, wait - it's because I got the same dx after a series of neuros and had similar blood tests. It seems like so long ago as I've packed it away in the file of experiences-not-wanting-to-remember. It is good to know that nothing serious is wrong but that's all that is given - it is frustrating to not get a real answer (I've decided that BCFS stands for Best Conclusion For Starters). All the time, money, tests, knowledgeable specialists and they can't even give you some therapy advice, dietary guidance, or exercise training to cope with the problem? By treatment options what do you bet they mean Rx's? Tell me what's wrong with this picture. Arghh, you stirred the memories deadpirateroberts!

 

[seadragonsovereign]

I'm Ok: Yes it is frustrating. (and Sorry for the nightmares !) Before I got into all this, I would have thought the neurologists would have a better understanding of bfs or bfs-related issues. But reading the posts on this site and my own research/experience, it seems that the field is a bit cloudy and more than a little disappointing. There are also a bazillion different neurological conditions, which until doing the research, I was totally unaware of and also many of these diseases/syndromes do not even have a verifying test that can be run! Plus they aren't always right: my first neurologist told me that he and another neurologist dx'd a lady with ALS, but more than a year after she was dx'd, she was no in worse condition and they no longer think she has it! Gave me a lot of confidence in that neuro. Anyway, thanks for the support.

 

[RainbowDoodle]

Glad your appt went well!!!On another note... Your not a Buckeyes fan??? I notice you are in Columbus.Us Clevelanders need to cheer on some winning team Andrea

 

[ySplendidCrafts9]

so, I guess I really do have health anxiety b/c I checked out those websites on paraneoplastic syndrome and freaked myself out that I may have some form of cancer. I had a bunch of blood tests but not that one!

 

[Krackersones]

Chez,The thing that made me feel better about the paraneoplastic thing was knowing that anything that can provoke an immune response can cause twitching. Yes, cancer can provoke the immune system but so can viruses (even ones that cause no noticeable symptoms), stress, and other things. Autoimmune conditions are very common and many are not life threatening and are completely manageable. In fact, if you search boards with people with arthritis and other autoimmune problems you will see that some of them complain of twitching. So the fact that paraneoplistic syndromes exist just provides some evidence that the immune system's response can cause twitching but it does not mean that twitching means you have cancer. In fact this is probably the most unlikely source of an immune response. Krackersones

 

[simonw00]

I understand theat the minor abnmormality on your EMG/NCV would have been a little bit of a disappointment but this does not detract from the wonderful news that all is well and you do not have anything sinister. As some of you will by now be sick of hearing about, I was found to have denervation/ reinnervation in my L quads on EMG and my neurologist seemed to think this was from a pinched nerve in my lumbar spine (I do get some back pain). That was 3 months ago and my L quads is nice and strong, same as it ever was! CheersSimon

 

[Krackersones]

Interestingly, my neuro's specialty is treating people thought to have ALS and finding they have something else. He has a packet he gives out with these case reports when he agrees to see you. He also has photos along the wall of the hospital of people in wheelchairs next to a photo of them standing holding the wheelchair in air. He takes a lot of pride in these stories and I think he is well entitled to it. It has got to be one of the more rewarding things to accomplish in life. From talking to him, I got the feeling that some of the cases were diagnosed without excluding even some of the easily identifiable conditions.