CFS diagnosis

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CFS diagnosis

Postby cclose on May 18th, 2012, 7:24 am

I've recently had some visits to neuros with mixed results.

The first thing is that my EMG is not normal.

The first neuro's report was that there was no evidence that it was ALS but he could not rule it out and the only option was to wait and see. He asked if I wanted a second opinion and recommended someone to me.

I went to see the one he recommended and his assessment was that in his view ALS is unlikely and that he thought the more likely diagnosis is Cramp Fasciculatory Syndrome (CFS). Obviously I prefer this assessment, but I did have more confidence in him as he has experience of over 300 ALS cases and was considerably older than the first neuro and I suspect has more experience.

For now I'm accepting that CFS is the most likely cause. The symtoms are getting worse and I'm suffering increasing muscle pain. I've cut down on exercise but it is now taking longer to recover. I'm interested to hear from anyone who has been diagnosed as having CFS and can tell me what sort of variation and change I can expect in the symptoms.

As you can appreciate, every time there is a change it triggers further anxiety.

Chris
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Re: CFS diagnosis

Postby Jujulia on May 18th, 2012, 8:45 am

Hello Chris,

I feel sorry for you... I understand what you're going through.

I also have a CFS diagnosis. I'm twitching 24/7 and use to get cramps quite frequently (especially in the beginning). I'm always afraid to yawn because it can cause a really painful cramp around the neck/jaw/cheek area.

May I ask your age? Also, how long have you been twitching (I suppose you are since you're on this board!)?

EDIT: I just read your previous posts. Are your thighs still twitching? Are you twitching elsewhere too? What type of cramps do you experience?
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Re: CFS diagnosis

Postby cclose on May 18th, 2012, 4:54 pm

Hi Jujulia

I am 63 years and I'm aware that many of the people who post here are by comparison young.

As to your question about cramps I'm not sure what people mean by it when talking about CFS. I would call it more like soreness in the muscle. Now when I exercise it gets more sore although I don't have any problem running apart from the discomfort.

I do sometimes get what I would regard as normal cramp, i.e. a very sharp sudden pain. I also get a prickly sensation particularly in the feet.

I've first really noticed the twitches when I looked at my left leg. beginning of Feb and saw them. Although I think I've been aware of things happening before then.

The twitches are still mainly in the left thigh. They are spreading to the lower legs and right thigh. The neuro said he noticed one in the right arm.

As I said before the changes are difficult to handle particularly as I don't know how bad it might get. So far it is getting a bit worse as time goes on.

Thanks for taking the trouble to reply.

Chris
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Re: CFS diagnosis

Postby raindog on May 19th, 2012, 5:50 am

cclose wrote:Hi Jujulia

I am 63 years and I'm aware that many of the people who post here are by comparison young.

As to your question about cramps I'm not sure what people mean by it when talking about CFS. I would call it more like soreness in the muscle. Now when I exercise it gets more sore although I don't have any problem running apart from the discomfort.

I do sometimes get what I would regard as normal cramp, i.e. a very sharp sudden pain. I also get a prickly sensation particularly in the feet.

I've first really noticed the twitches when I looked at my left leg. beginning of Feb and saw them. Although I think I've been aware of things happening before then.

The twitches are still mainly in the left thigh. They are spreading to the lower legs and right thigh. The neuro said he noticed one in the right arm.

As I said before the changes are difficult to handle particularly as I don't know how bad it might get. So far it is getting a bit worse as time goes on.

Thanks for taking the trouble to reply.

Chris


I too have CFS and in 6 +_ years since onset it remained very constant and painfull at times. Ive had 2 abnormal EMGs that has revealed chronic denervation and have since lost both lower limb deep tendon reflexes , recently ive had a diagnosis of ME/Chronic fatigue syndrome as well as the Cramp fasciculation syndrome. The main thing is that these are not life threatening conditions. I found the best thing is try and remain as active as possible i have taken up crown green bowling to a competitive level that takes up alot of my time plus ive made lots of friends who are fun to be around. Ive not come across any meds that ease the fasciculations but new era mag phos (from Holland and Barratt) and LDN (low dose naltrexone ) has helped greatly with cramping, muscle soreness and stiffness and also fatigue.

If you drop me a pm i'll send you my phone number if ever you want to talk .

ATB
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Re: CFS diagnosis

Postby Jujulia on May 19th, 2012, 9:51 am

Thanks for passing by Raindog, I was thinking about you when I read Chris's post...

Chris, some folks around here have had findings on their EMGs and are still doing fine. As for the soreness and fatigue you describe, let me tell you that it's also a problem for me. In my case, the feet and the hands are the most affected places, even though I also experience body wide pain (legs, arms, chest, neck, back, face, etc.). Sometimes my feet hurt so much (after using them or not) that it's very painful to walk. My hands feel tired very easily too. Washing the dishes, eating sunflowers seeds, etc., is much more difficult now than before. Thanks God, I can still play piano even though my hands and my arms feel sore a lot faster...

As for the exercise intolerance, same here! I still play tennis, badminton, volley, etc., I haven't lost my strength but it definitely takes me more time to recover... even after a long walk, my thighs will twitch like crazy for a while (at rest).

I hope you will find all the support you need in this community (sometimes doctors are not pretty good at reassuring their patients...). I'm sure you'll be fine.

Take care of yourself.

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Re: CFS diagnosis

Postby dreadpirateroberts on May 22nd, 2012, 12:23 pm

I have the Cramp Fasciculation Diagnosis also. In fact, during an EMG on my calf my foot cramped up severely! Nice that the symptoms show themselves to the neurologist! My calves and feet are in constant movement and its randomly everywhere else for me. Muscle cramping, as well as twitching, gets worse after exercise but I refuse to give up my workouts. I take baclofen to calm the cramping tendencies and it really does have a good effect on them. I also take clonazepam on occasion to settle my nerves in general and it, too, helps. My EMGs have been clean, but my NCTs have always been abnormal though my neuro has no concerns.
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