Worried new comer

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Worried new comer

Postby cclose on April 21st, 2012, 6:28 pm

Hi

I'm a new comer to this forum and I'm experiencing the usual torment from worry about have I got ALS.

I've had fasciculations in my left thigh for some time and on a visit to my GP mentioned them. She referred me to neurologist and on completion of the examination I asked him what the worst case was and was not comforted when he said MND. He did say that the lack of clinical weakness was encouraging.

I've now completed the tests and he says there is no evidence I have ALS, although he did not seem prepared to say I have not. I've not yet seen his final report.

Since, the first examination the fasciculations have got worse and are also occurring on the right leg, although the neurologist had noticed them on the first examination.

The thing that concerns me is that the muscle bulk on the left thigh is noticeably less than that on the right. I also have soreness on the top of the left thigh particularly after exercise. However, I don't notice any difference when exercising between the legs and the neurologist says the strength of the left thigh is good. I also have a sensation of stiffness in the ankles, although this could be an over active imagination. I've also lost weight recently, this is probably anxiety, although I don't think I'm eating less.

I know I should accept that the most likely explanation if BFS and, compared with the experience of many on this forum, a mild case. I'm finding it very difficult to not be dominated by the thought it could be ALS.

It would be helpful if anyone has had the same symptoms as me.

Chris
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Re: Worried new comer

Postby bobajojo on April 21st, 2012, 6:47 pm

Chris,
This entire forum is full of people with symptoms just like you. Without weakness, you can relax. My left thigh is considerably smaller than my right as well, but thats normal in almost everybody. Nobody is perfectly symmetrical. Please try to relax. Have you had an EMG? If so, then thats even more reassurance that nothing sinnister is going on. If you neuro did not send you for an emg, then that means there was nothing in your clinical exam to even warrant one ( another great sign). So it looks like you have boring old BFS like the rest of us! -Matt
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Re: Worried new comer

Postby Yuliasir on April 22nd, 2012, 1:33 am

Agree with Matt,

as with many many other diseases, the doctor would never say : "you do not have that disease", but 'there is no evidences that you have it', just becuse this reflects the nature of scientific approach. They are not Almighty and Clearseeng Gods, so they say what they exactly see - you evidenty do not have MND. It is also usual to keep even benign facilulating people on follow up - not becuse BFS is a precursor for something bad - there are here people living with BFS for up to 20 years - but because there could be other underlying conditions, like thyroid, pituitary, general endocrine problems, malabsorption issues etc etc etc anf follow up allows to define them /or rule out / gradually.
Unfortunately there is no clear 'decision tree' for now to look for certain abnormalities in the physical and chemical conditions of the body in order to clarify what's going on with BFS sufferres (seems like there are 4-5 different reasons for this syndrome, anyone would not kill you but some might be with easier outcome and some with more tough).

Considering you are losing your weight, I also would suggest you to get advice from your GP if you need to check your endocrine status. Thyroid problems (hyperthyroidism) often cause rapid loss of weight at the same or event increased appetite, as well as excersie intolerance, fascics, anxiety etc. to detect it properly, you need several sonsequent blood tests for three interrelated thyroid hormones (t3, t4 and another one which I do not rememeber right now) - but not only for one of them (as sometimes is prescribed). that would allow to see if you have any sublinical (subtle) disbalance or even a clear one... Check yur glucose level too, just to see the whole picture.

and generally try not worry too much. My neuro, when I went to her complaing about widespread fascics, also told me that 'it is good that you came now, as this might be benign but also might be a sign of MND' Holy crap!!!!! I spent two month in a lowest circles of the hell (even with clean ENMG) and got certain relief not only due to medication (very placebo by nature) but due to this site only...


regarding your muscle bulk: as we all are either right- or left-handed, same is with our legs. for hands that bulk difference it is just not so evident. One of your legs ALWAYS makes more efforts when walking, jumping etc and it is called leading leg for this reason :). Until they both are supporting you, allowing you go, jump, make squats etc. - do not worry please it is normal physiological difference.
have a good luck
regards
Yulia
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Re: Worried new comer

Postby cclose on April 23rd, 2012, 2:16 am

Matt and Yulia

Thanks for your encouraging replies. The neurologist assessment did include the results of an EMG test.

The difficulty is accepting that it is not a serious issue. But I guess that is a problem that lots of people on this forum have.

Since, my left thigh does suffer from soreness, I'm now finding it hard to follow my usual exercise regime for fear it might make it worse. I feel that perhaps I should try and get back to my routine and ignore the soreness if possible. I would appreciate any advice on this.

Chris
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Re: Worried new comer

Postby chrissi on April 23rd, 2012, 3:09 am

Muscle soreness is a big issue with BFS. Yes, ignoring it is a good choice. For pain relief in legs: stretching, keeping it warm an...atermendous help for me I found out 2 days ago : kinetic taping!!
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Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Worried new comer

Postby Yuliasir on April 23rd, 2012, 4:11 am

hi Chris,
sometimes I also have painful sensations in my upper thigh (they come and go). Since soreness might be description for different conditions and form of pains, maybe what Chrissi says is the best way - not power exercises but stretching. Good static exercises help a lot to keep muscle alive and they are very careful at the same time.
Hope you'd be OK
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Re: Worried new comer

Postby BobDownSouth on April 26th, 2012, 11:14 am

Hi Chris!
Your symptoms strike me as similar to mine. I'm 64 and began twitching last July. The symptoms intensified through November. My neurologist gave me a 50-50 chance of ALS vs BFS after I had the EMG test (done in late October). I was scared and depressed as my legs developed a rubbery feeling and walking became a chore. My twitching was very loud during that period and sleeping was an issue. I twitched heavily in my legs and less so but still noticably in my arms. I had stiffness all over my legs from time to time and more than occasional cramps in ankles and calves.

In late November, I went to the Mayo Clinic in Jacksonville, FL, and got a second opinion from their top ALS specialist. He looked over my test data and did the clinical neurological test for muscle weakness. As I left, he told me he thought I did not have ALS, but in his written report hedged saying I might be in an early stage of the ALS disease.

In January, my local neurologist ran some more blood tests. All came back negative including one looking for muscle breakdown products which sometimes shows up in ALS patients. Also, my local neuro told me in January or February (why not earlier?) that those who first complain about twitching more than not do not have ALS. One study of ALS patients I came across said the majority had muscle weakness as their first complaint although I believe about 10% had twitching as their first noticed symptom.

By mid January, I was again able to walk miles rather than yards. Stiffness became much less as well as cramps. My arm weakness of December seemed to go away as well. I still twitch now most noticed by me in neck (scary!!) but still swallow and talk normally. From all that I have learned, in ALS symptoms rarely improve significantly with the course of weakness getting greater until there is no strength in the limb. The disease moves from one spot to another but in the very early stage usually is only in one place (arm, leg, neck). In my case I had twitching in both arms and legs after just two months. If symptoms tend to come and go, you are more likely to have BFS than ALS. The longer you go without developing clinical muscle weakness, the more likely it is BFS, not ALS.

Hope this helps ease your mind! The whole thing is scary even if it is BFS (which is annoying but does not appear as life threatening by itself).

Regards! Bob
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Re: Worried new comer

Postby chrissi on April 26th, 2012, 12:11 pm

Bob, it is very nice U R trying to help here and I am so glad that you are doing better now. I guess what the neuro told you was very scary. Unfortunately this mentioning a 50/50 chance of BFS and ALS will make people on here scared *beep*.
So I want to post that the answer of the mayo clinic has to be interpreted of the background of your age (no offense taken Bob, I think sean connery is one of the hottest guys on earth and he is not 30 either...).
In a relatively young person, an EMG is expected to be clean except fasciculations (as long as this person has no other issues like nerve entrapment etc.). So clean means clean, only fascists. Nasty things easy to rule out.
The older U get, the more "dirty" your EMG will get, due to all the work your muscles and nerves have done in your life, hard working,little accidents etc. Of course there might be a 60 year old presenting with a completely clean EMG, but that will be the exception from the rule. Usually there will be some "signs" on it in a ealthy person. And this is the point where a neuro will have to make a statement, and this will just not be as easy as in a young person. As twitches without weakness are usually benign, they call it BFS. But as they just cannot come up with one of those perfect EMG*s they cannot rule out ALS that easy. And I guess that is the basis for that statement. And if you eventually have been a hard working guy or have had serious back issues, it will be much dirtier than other people at your age.
But this does not mean that you cannot rule our ALS in a relatively young person by an EMG. And of course it does not mean, that twitching means you have a 50/50 chance of BFS/ALS. If YOUR neuro tells U it is BFS, then you should absolutely trust him.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Worried new comer

Postby dARR on April 26th, 2012, 4:52 pm

Hi cclose. ALS cannot present that high up the leg your thigh would almost never atrophy and become weak before your foot.. that is just not how the disease works.

There is never ever a 50/50 shot at ALS... It is an incredibly rare disease.

Take care feel better, you have nothing to worry about I bet everyone here has had a thigh twitch!
Dar
He who fights with Monsters might take care lest he thereby become a Monster and if you gaze long into the Abyss the Abyss also gazes into you. Fredrich Nietzche, Beyond Good and Evil
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Re: Worried new comer

Postby cclose on April 28th, 2012, 5:43 am

Thanks all for you're replies. I do take some comfort from them, but I'm still very worried. I am 63 so Bob's experience most closely matches mine. The lack of a normal EMG is disappointing, but not conclusive of anything. Another thing that is worrying me is that I'm losing weight. Cleary worry is a possible cause, but although I'm not enthusiastic about food, I'm making sure I'm eating at least the same amount if not more. Does anyone else have experience with losing weight not due to appetite loss?

The thing I find most difficult is that things constantly change and every time there is a change, panic sets in.

I know I have to accept there is a degree of uncertainty and learn to live with it. At the moment my thoughts are dominated by negativity. I know lots of you have been through the same thing. So any suggestions about how I might turn my mental state around would be welcome.
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Re: Worried new comer

Postby Yuliasir on April 28th, 2012, 7:16 am

Hi Chris,

What i would say about sudden weight loss it that in fact it could be caused by many manageable reasons.
have you had your endo panel checked? Thyroid ans pancreas issueas are most common reasosns for quick changes in weight in therms of methabolic problems. If that would be ruled out, then please also consider that loss of interest for eating and just keepin it 'enouhg as before' along with increased anxiety might also result in weight loss.

I lost 3-4 kilos in few weeks when I was recently very very stressed (hey hey now I can eat extra pastry!!!). I did not lost my appetite i just was neglecting proper eating schedule... and had no particular interest to what i hut into my body. i was tooo worried to devote my attention to food.
Worries are excellent 'diet', however very bad in nature...

You are about at the age of my Dad. So I would give you a kind of hugs if you allow this. For me personally uncertainity is a kind of ride through hell but when I was obsessed by the bad thouts I tried to live just in a day today. Sometimes it helps.

My fullest sympathies
Yulia
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Re: Worried new comer

Postby cclose on April 28th, 2012, 8:03 am

Hi Yulia

Very kind of you to offer a hug and I would gladly accept it if it were possible! Not the way an elderly English gentleman should behave! The stiff upper lip is a bit wobbly now.

I'm fortunate to have a wife and daughter to give me support and hugs. Although we find it difficult, it is also hard for our loved ones. Having this forum helps to deflect some of the anxiety from them.

You are right. It is the anxiety that is the real difficulty.

Appreciate your sympathy
Chris
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Re: Worried new comer

Postby Yuliasir on April 28th, 2012, 8:16 am

yep great forum, excellent teamwork I'd say...
I live in Ukraine, Eastern Europe so we do not even have a locall forum like that. only those related to heavy MND sufferes... So you probably can imagine what a relief it was for me to found those pages... and to discover that I am neither unique not alone... On our local popular health forums neuros usally discharge patients displaying BFS symptoms immedately to physchiatrist (I do not mean that is wrong reference in terms of treating patient's anxiety, but they never ever explained that those conditions are benign and how they differ from real MNDs).

Best wishes to ou and your family and I hope your case would still be within anxiety flareup.
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Re: Worried new comer

Postby cclose on April 28th, 2012, 8:34 am

Hi Yulia

This exchange has calmed be a bit. Thanks for that.

I hope that things are going well with you and your family.

I would appreciate hearing from anybody who has had similar weight loss that I am experiencing.
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Re: Worried new comer

Postby bobajojo on April 28th, 2012, 8:39 am

cclose,
I lost 24 pounds in the first 3 months of all this and it was all due to anxiety (from 198 lbs to 174 lbs)! I gained it all back in 6 weeks! Its crazy what anxiety will do to you. There are many many other BFSers on the chat site that have had similar weight loss with BFS. Very normal. -Matt
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Re: Worried new comer

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