Experiencing Quad Muscle Cramping?

[GinniferLynne]

I've not been doing too well lately. Extremely depressed (broke down in my GP's office yesterday) and stiff in my upper right leg with quad cramping. I realize cramping can be part of this syndrome, but my cramping is at least once a day, and only in the left quad muscle.

My question is, has anyone out there EVER experienced cramping in this huge muscle. My GP suggested an EMG/NCS for my own sanity, but I just don't know if I want to know the results. Please believe that my cramping and stiffness is not perceived - it is definitely real.

Any thoughts appreciated.

Also, I want to thank everyone the past two years that have helped me on this board. I just don't feel that I can be of much help to others at this point, and feel that it may be good for me to take a break from all this stuff. I'll be checking my pm's for the next week or so, and if anyone wants to stay in touch, I'll be happy to provide my email addy.

Love to you all,

Ginny

 

[jsageurge]

Ginny, I know that your symptoms are real, not imagined. But I still honestly believe, without any doubt, that you do not have a terrible disease. As you said, you know that cramping can be (is!) part of BFS. What makes you think that it can’t happen once a day, or even 24 times per day? Why would you not think that it would be asymmetric with BFS? Why does it matter what muscle it is? I can’t see anything with what you are describing that would make me concerned at all, or give me any reason to think it is anything but BFS—which has been giving you real symptoms for two years, without any other neurological deficits and no weakness.

I’ve been having small cramps since I started twitching. They are not full-blown muscle spasms, but the muscles tighten up and ache for anywhere from a few seconds to several minutes. This may happen once a day or 10 times a day, or sometimes not at all. For the first few months it was my left forearm. In months 7-9 it was my right calve. Recently, it is my left bicep. It was asymmetric in all cases, and appeared in different muscles at different times since I started twitching about 10 months ago. You know that many other people here get cramps. In the Hart study 20-40% of the people with PNH had cramps.

I’m not sure what to say about the EMG. Your GP does not think you need one, and is only suggesting it for your “sanity.” Personally, I have my doubts about that working. Many people find some initial relief, but then start worrying again, thinking that the EMG was done too early. If you’ve got yourself convinced that you have a rare slow-onset-something-or-other, then what amount of time will satisfy you? Two years? Three years? Four years? On the other hand, you just can’t go on like this. If you think an EMG will convince you, then just get it done and get it over with. It WILL be normal. With or without the EMG, you need to get over this fear. I truly believe that at this point your stress and anxiety over this is the only thing that is doing any damage. Please feel free to email, PM, or call me anytime if there is anything I can do. I just don’t want to see you feeling like this. Please know that you have helped many people here already, and now you just need to help yourself, whatever that takes.