Dealing With Twitching and Other Symptoms

[ivancrazy]

Hi there-

I've been having a particularly rough time lately. I've been dealing with twitching and other symptoms for about 9 months now. The twitching has actually become less frequent, but is still there. I've had other problems, though, that make me nervous. I've never been diagnosed with BFS. My neurologist never said anything about it to me...he just basically said to come back in 4 months and during that time I found this website, so I'll definitely mention it to him next time. I'm just generally frustrated with the doctors I've been seeing. I have a bulging muscle in my calf and some small little nodules around that area. My PCP doesn't seem worried and now the Rheumatologist said to "disregard them". The problem is that this area causes me discomfort after being on my feet for an extended period of time and I have occasional feelings of slight numbness in that area. But, it does come and go. And, like many of you on here I get occasional tingling in my extremities, which I think can be common with BFS? Maybe I'm wrong? I have had a clean MRI and EMG, so I'm pretty sure ALS is out of the question (especially based on what I've read on this site). However, I'm not convinced there isn't something else. Like I said, I have seen a Rheumatologist. Originally, he thought I had Fibromyalgia but was going to do some blood work to rule out other things such as Lupus, Lyme's Disease, Rheumatoid Arthritis, etc. When I went back for the follow-up he all of the sudden says, "i don't know what's wrong with you". That was very discouraging and that was the basic impression I got from the Neurologist, too! Apparently, just because something like Lupus doesn't show up in a blood test now, it could later. This is what he was telling me anyway. And, I've done a lot of reading on Fibromyalgia and Myofascial Pain Syndrome and when I mentioned some things to him, he didn't seem very well versed. And as I mentioned before my Neurologist never mentioned BFS. I guess I'm just feeling frustrated that I'm getting no answers and not totally confident in these doctors either....not convinced that there's nothing wrong with me and that this is totally benign. Maybe it is...I don't know if any others get these weird symptoms like occasional numbness or not? I'm able to do things like go for walks and such. It's not like I'm disabled from this, but I do get a lot of discomfort in that leg when I'm on my feet a lot and if I go for a walk I get tingling in my legs for about 15 minutes afterwards. I also generally get aches and pains and a lot of fatigue. But, I'm sure a lot of this is worsened by my level of anxiety. My Psychiatrist did put me on Klonipin, which seems to help some. It's just so confusing because sometimes I feel fine and then I think about having these knots or lumps in my legs and it makes me crazy and wondering what the heck is wrong with me and nobod seems to have any answers! I guess I'm just hoping for some encouragement and wondering if anybody else has experienced similar things. Also, how do you find a good Neurologist and/or Rheumatologist? None of my doctor's have heard of BFS, which is very discouraging. Any thoughts or ideas would be much appreciated.

Thanks for reading, if you've gotten this far. Sorry for rambling so much.

Best to you all...
Renae

 

[reneecatx]

Hi Renae,
I can feel the frustration in your post. Is there a teaching hospital that you can go to. I was lucky in that my neurologist is a movement disorder specialist that studied at the ALS clinic at Baylor College of Medicine. I find that the colleges that teach medicine have a wide selection of specialists. Like my neurologist told me your basic neurologist deals mostly with headache type problems. People with BFS need to see a specialized doc. My doc has seen lots of people with BFS and BFCS, and that's because he does see things of this nature on a daily basis.

I'm not sure about the lumps in your legs but it seems that fibromyalgia patients experience this also. I'm just confused about all the autoimmune diseases and BFS. Lupus, chronic fatigue,lyme, fibro, EBV are very confusing and frustrating for both patients and doctors. What provokes the body into having these disorders? Why is it so common today?

I'm glad klonipin in helping you somewhat. I know what you mean about "what the heck in wrong with me". Some years ago I had an unexplained low-grade fever that lasted for 5 months. Along with it I had fatigue, tender lymph glands in my neck and basically I felt horrible. No one could help me. It finally resolved on it's own. This happened in 86 and I've had it reoccur several times since. The last time it happened I went to an after hours clinic to have my blood drawn to see if something would show up. They said everything was fine. I think the next time it happens I'm going to an internist, rheumotologist, or infectious disease doctor. So I've been through the "we don't know what's wrong with you" BS.
Now I have BFS to add to my "unexplained condition list"

Everyone is here to support you. You take care...see if you can see a movement disorder specialist, or someone associated with a major university. It couldn't hurt. ((((hugs))))

Renee

 

[ivancrazy]

Hi Renee

Thanks for your response. Every little bit of encouragment helps and it has definitely been a rough few days. I was just so down and emotional after leaving the Rheumatologist's office. He knew I was upset and just basically walked out of the room as if to say, "I don't know what's wrong...I don't have anymore time for you". That is the most annoying thing to me. So, I finally called my PCP and she's on vacation so I can see the covering physician but she doesn't know what's been going on with me. I took the appt. anyway because I'm really nervous about this lump on my leg even though the Rheumie said to "disregard the lumps". But, I've also been getting numbness in that area (as I mentioned before) and I get chills in that leg. It's very weird??? So, today I've been a wreck and ended up calling the Neurologist, too. He wants me to come in next week. So, I guess I'll cover all my bases. I'm seeing the Psychiatrist next week, too!! What fun??

And yes, I think Fibromyalgia patients do sometimes experience "lumps and bumps". I've also read a lot about that type of thing with Chronic Myofascial Pain Syndrome, but when I mentioned that to the Rheumie he said, "I don't like to diagnose people with that because there isn't much you can do about it". ??????? I was just not very impressed with this guy, obviously!

That's strange that you had that low grade fever, tender lymph nodes and such so many times and with no explanation. It is all so baffling, isn't it? So, you obviously know how frustrating it is to have somebody tell you they don't know whats wrong with you. Sounds like you're lucky that you have a good Neurologist, though. There is a teaching hospital a couple hours from me....Dartmouth Hitchcock Medical Center in NH. My family lives in that area, so it wouldn't be too inconvenient. And I'm very familiar with the hospital and their reputation, so thats probably a good thing to look into. Thanks for the suggestion!

Well, thanks again for your encouragement!! The people on this site have been so nice! You take care of yourself, too!! I hope you're feeling well!

Have a good weekend!

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