I'm new here...not dx'd yet

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I'm new here...not dx'd yet

Postby kmdgirl on January 16th, 2004, 12:59 pm

Hi everyone. My name is Kim and I will be 22 years old on March 17th. In october I was diagnosed with fibromyalgia and CFIDS (chronic fatigue immune deficiency syndrome). For years, I've had muscle twitches every now and then, but over the last 2 years they've gotten progressively worse and worse. Initially it began as a twitch in my leg or arm and it would be for a couple seconds and then go away for weeks or months. Now, it's progressed to where I have them every single day probably about 50 times a day. They used to be mostly confined to my legs, but now they are everywhere...from my legs to my arms to my chest to my back, etc. They start in one place and can last for 20 to 30 minutes in the same location.

I'm under a rheumatologists care for my fibro & CFIDS. I know that muscle twitches can be a symptom of my disease, however, I'm not sure about the fact that it is getting worse and worse by the day.

I recently made an emergency appointment with my PCP because the twitches were so bad. He ran yet another round of bloodwork (I'm a human pin cushion right now) and he gave me a referral to see a neurologist. I have my neuro appointment on January 26th, and I am curious to see what he has to say. A close friend of mine who also suffers from fibro had done some research for me and came across BFS. I could not believe it when I read the symptoms because they are very close to many of my symptoms. It sounds like BFS and fibro may overlap a bit. With the fibro I have tenderpoints that often flare up causing pain with or without muscle twitches.

Anyway, I guess I'm just curious for any input you may all have. I honestly don't think anything major is going to come out of the neurologist appointment. I'm sure he'll do an EMG and an MRI, but I'm not worried about it being anything serious such as ALS or MS. I think if it were one of those, I would have known it by now.

Anyway, thank you in advance for your assistance

Kim
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Smart lady

Postby Jayel on January 16th, 2004, 2:13 pm

Kim-

You have a great handle on yourself considering the length of time and your age. Most of us here would say that the testing is just to confirm you do NOT have anything serious. WHen you say pain with fibro, is it just in spots or does it radiate in a nerve ending, like down an arm or leg? My sister in law has this and often complains of pain but I am not sure what she means, exactly.
BFS site is awesome for anyone wondering and waiting. Keep reading the posts and let us know when you get the all-clear dx!

Jayel
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Postby kmdgirl on January 16th, 2004, 6:38 pm

Hi, and thank you for your response. I'm pretty sure that it's nothing serious, but I think my doctor wanted to be sure as well. I have a feeling this may end up being written off as yet another crazy symptom of my fibromyalgia. The pain of that usually starts in one area. For instance, one of the tenderpoints is on the neck at the base of the skull. I'll feel the pain in that exact area and if I let it go without taking any pain medication, it ends up radiating to my neck and shoulders and I end up getting a massive headache. It's a really nasty disease and I'm still working on getting it under control. Thankfully, I have a great treatment team consisting of my PCP and rheumatologist. I was also diagnosed with CFIDS, which I'm having a hard time dealing with right now. Seems like it's just one medical problem after another. I'm too young to be dealing with this stuff.

Kim
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Postby Brian_B on January 17th, 2004, 2:44 am

sorry you have fibromyalgia. My aunt has it so I know how bad it can get. Theres lot of research going on now though so maybe they will find a cure or at least be able to really help it

I live near St Louis so I know theres research at Washington University medical school, which is medical school at Barnes Hospital in St Louis

as for twitches, if you had them for more than a year with no progression to weakness you have nothing to worry about
"The only thing necessary for evil to triumph is for good men to do nothing"
Edmund Burke
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Postby uber on January 17th, 2004, 5:31 am

I have to agree kmdgirl this is definately not ALS, there is a possibility that its MS and should consider getting an MRI done to rule that out. For now I would accept the fibro diagnosis.
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Postby Dale on January 19th, 2004, 12:36 pm

Hi Kim - am sorry to hear about your health problems. That's a heavy load for someone your age to carry.

That's great news that you have an appointment with a Neuro on the 26th. Although I'm no Doctor, it seems reasonable that your twitching would be related to your recent diagnosis of fibro.

Ignore the earlier posting about the possibility of MS. Why on earth "Uber" would post that dribble is beyond me.

Try your best not to get anxious. After your appointment, come back and let us know how it went.

Take care.

Dale
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Postby uber on January 19th, 2004, 5:13 pm

I suggested MS, cause in some cases and i cannot stress "SOME" twitching can be an early indication of MS and it is also quite well known that fibro can be a misdagnosis for ppl with MS. I didnt say that I think kmdgirl has MS, and also said she should accept the fibro diagnosis, i just said there is a possibility of MS and as in all neurological problems you need to rule things out, hence why I suggested the MRI. So given that I hardly say you could say im talking dribble Dale :/
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Postby Dale on January 20th, 2004, 11:47 am

Uber, why must you always look for the most obscure? She's been diagnosed with FM and twitching is a symptom of it.

Regardless, we have no business suggesting to anyone here that he/she may have a possible serious neurological disease such as MS.

She's a 22 year-old kid with a lot on her plate right now. She needs some support - not DRIBBLE.
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Postby garym on January 20th, 2004, 4:51 pm

Dale,

I was dx'd with fibromyalgia by a rheumy in nov. He said that the twitching was not a symptom? In fact he said classic fibro, except for the twitching. Whatever it is, it sucks. BTW, I don't think I have fibro. It is such a garbage dx.

Gary
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Postby uber on January 21st, 2004, 8:58 am

Im not really suggesting she has it, i was just saying it was a possibility and should be ruled out.
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Postby Dale on January 21st, 2004, 11:41 am

Gary - I know a few people with FM & they all experience muscle twitches. There was a post made here over a year ago by I believe "Michelle" that contained a link to FM symptoms. It included many, many symptoms, including twitching. The few people I know with FM certainly don't think of it as a "garbage" dx. It seems to be a lot more serious and debilitating than the twitching BFS'ers experience. Are you being treated for your FM?

Uber, you can't read a few posts made by someone and then make a comment that they may have a serious neurological disease like MS. You're not a Doctor! I can certainly read your post and dismiss it immediately. She, on the other hand has a lot of stuff going on right now and probably isn't in the best frame of mind. It's wrong to make those type of posts. I hope the poor kid isn't worrying about MS...
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Postby uber on January 21st, 2004, 12:08 pm

yes but once again dale, all im saying is that its often that MS is misdiagnosed as fibro and that muscle twitching can be one of the symptoms of fibro and all I said is that cause MS was a possibility she should have it ruled out.
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Postby Dale on January 21st, 2004, 1:20 pm

Sigh...

I give up. You are talking in circles. I'm getting a headache (don't tell me it's MS).

UBERlievable...
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Postby garym on January 21st, 2004, 3:54 pm

Dale,

Yes I'm being treated for FM, but it doesn't help. Just saw the rheumy last week. By garbage dx I mean that it is a generic dx for many things that can't definitively be dx'd, and I certainly don't want to diminish the problems people have because of it. The people that actually have it, do suffer. I too know someone who is suffering from supposed FM...me...and whatever I have, if it is FM, it is debilitating. The fact is that my rheumy told me flat out that twitching was unrelated, and told me to take it up with my neuro. All the info./brochures he gave me said nothing about twitching, maybe the brochures at the dr. office haven't been updated, they're published by some national rheumatoid society. Those guys probably don't know what there talking about anyway........

Gary
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