Worried & need advice/support

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Re: Worried & need advice/support

Postby readytocheckout on April 23rd, 2014, 5:46 am

Hi Yulia

Thanks for replying. I tried to PM you but the site wouldn't let me. Yes I was wondering about another neuro myself but then I wonder how many I need to go to that will actually listen. Perhaps they're bored with the story, I don't know. I thought a change to my symptoms might have raised a red flag, especially swallowing, but he wasn't interested.

I also forgot to mention in my last post that I have very fatigued legs, the fatigue sensation is almost painful. The fatigue feeling makes it hard to get out of a chair sometimes. The loss of thigh bulk is on the outside of both thighs and there seems to be only what I can describe as a valley vertically down the outside of both thighs between what I assume is two muscles, it's almost down the whole length of the thighs. And a similar valley exists on the inside of both forearms just below the elbows. My posts seem to be going so far away from a BFS topic. I did actually try to get a Neuro appointment with the first neuro I saw at the start of last year but they're booked out until the end of July. I really don't want to but I'm starting to think I should just go to an ER at a hospital but I don't think that would help, just make me look like another anxious person.

My mouth feels awful, the tongue is a constant source of an electric type sensation, and the deviated uvula can't be right. It isn't deviated all the time though. Oh I feel so worried now.

edit: What made me suspect TMJ involvement was throat clicking sometimes when I swallow and neck and shoulder pain, some left ear fullness as well and tinnitus in both ears but left is worse.

Garry
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Re: Worried & need advice/support

Postby Yuliasir on April 23rd, 2014, 6:32 am

well, if you demonstrate significantly deviated uvula, I think this would not let any neuro to say it is imaginary issue.
Some of our fellows had really bad fatigue and one of them, SuzyQ, was even misdiagnosed with MS and got intravenous steroid course. She appeared to be completely cured from both BFS and fears, while she was brought to hospital in a wheelchair because her legs were ultimately unstable. Chrissie also had bad times with gait stability, and she also is cured now (or at least feels much better)...
throat clicking is caused by decrease of eustache pipe outlet... Did you also see ENT doctor? (just can not remember).

For me it looks like for the sake of peace of mind with so many symptomes concentrated at one body part you may seek EMG again to be sure you do not have denervation issues. Do not fell down the chair, not all of those issues are caused by awful ALS. Trigeminal, fascial and glottal nerve all come out of the main brain via openings in the scull, and surrounding tissues may cause compression as much as in any other part of the body. There are also infection diseases, methabolic diseases etc. which may cause symptomes like yours.
At least ALS seems not to develop like yours - here there everywhere. it is practically rather focal disease spreading gradually but increasingly, and n limbs usually from periphery to proximal parts of muscle (from fingers to the body). of course I heard stories (even told by our fellows about their relatives who died from ALS) - particularly one fellow reported his uncle was 100 % healthy 60 years or so man, then can not take off his hand from a golf pole, then in few week he was bed ridden, put on gastrostoma and ventilation and died soon in about 1 year - but you can see that in this case it was really violent loss of fucntions (which is not your case). In another story an elderly realtive had just slurred speech and it took over the year for him to feel a hand paralysis (which is again not your case). In yet another story a person had bulbar onset and died of respiratory failure even not being paralysed elswhere... So I mean your picture - at which supposedly you may have troubles in hands, legs and bulbar region, all rather mild and did not get to the point of functional loss, rather points for someting other than ALS too. Especially if you lack reflex changes...
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Re: Worried & need advice/support

Postby leroyb on May 12th, 2014, 6:13 am

Hi

I shouldn't have been looking but i saw this awhile ago on a detailed neuro exam guide and it said specifically that a deviated uvula was of no interest in the context of the exam.

Don't know if that helps but that's what I read.

How are you doing now Garry?
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Re: Worried & need advice/support

Postby ShawnW on May 12th, 2014, 12:41 pm

Hyperawareness, globus hystericus, some GERD and good old fashioned anxiety can cause many of the problems you describe. Why assume the worst?
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Re: Worried & need advice/support

Postby readytocheckout on May 13th, 2014, 3:52 am

ShawnW wrote:Why assume the worst?


I guess that's what us stressed out undiagnosed newbies do. Awful isn't it. So hard to control the mind, I tried with meditation and all that happened was I could feel the twitching and shaking and every other feeling in my body while I was trying to relax, so after a few months I decided that I couldn't relax enough yet to meditate.

leroyb wrote:How are you doing now Garry?


I'm far from well, feel pretty awful actually. If anything my swallowing has worsened but I'm still praying that I have some sort of TMJ problem, I'm seeing a neuromuscular dentist at the end of June. I saw an ENT and he found nothing. My muscles are doing more than twitching now, I often see the muscle on the outer thumb side of my hand do some sort of movement, it's not a twitch but I don't know what to call it. My right foot is feeling strange as well, almost like I'm going to fall over as I walk.

As far as the twitching goes, if this is what a flare is then that's what I've got. My worst twitching in over a year. I can feel something going on inside my hands, when my wife holds my hand tight she can also feel it. When I need to grip something tight my thumbs hurt and the right thenar is still getting smaller, my doctor confirmed last week that it has flattened a lot, I hope that's carpal. And the twitching on my face and scalp, freaks me out just thinking about it, it's the worst it's ever been.

I have lost strength in both forearms but especially in my right. My thighs are continuing to get smaller but more so my right. I also have burning over the right foot and ankle and what I guess is burning in my mouth and tongue.

I know that a gym wouldn't be suitable for me at the moment. What type of really mild exercise should I attempt to try to start building up my arms and thighs? All I'm doing now is 2 or 3 6km fast walks per week but I can feel what I guess is exercise intolerance happening in the form of painful fatigue and I feel like I have to be so careful that I don't fall when I walk because of the strange feelings in my legs, they also twitch while I'm standing which I thought usually stops BFS twitching when the muscle is being used.

I still don't believe that this is just BFS anymore. Thanks for asking about me guys. Cheers
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Re: Worried & need advice/support

Postby wjjw on May 13th, 2014, 12:52 pm

readytocheckout wrote:I still don't believe that this is just BFS anymore.

Apparently both your doctor and neurologist do.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Worried & need advice/support

Postby Xina535 on May 13th, 2014, 2:40 pm

Hi Readytocheckout,

I am sorry about these scary symptoms. I understand how out of your mind this probably has made you. I wish I had the answers you need.

With everything happening to you, and the visits and tests you've had, I would think that if you had anything serious, 1) your docs would have seen it by now or 2) they would take it serious and keep testing you until they found out.

I can only advise to hang in there and take it day by day, and do anything you can that you enjoy!
Please take care, thinking of you!
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Re: Worried & need advice/support

Postby readytocheckout on May 22nd, 2014, 5:52 am

wjjw wrote:Apparently both your doctor and neurologist do.


Well yes and no (more yes though). I'll go into some more detail below.

Xina535 wrote:Please take care, thinking of you!


Thanks Xina, a little TLC never goes astray at the moment.

Anyway yesterday I saw my neuro, I had more NCV tests and an EMG. I don't have the final result from my doctor yet but the neuro said there's nothing to indicate MND. Of course I already had myself in a pine box before the tests and actually felt surprised that nothing nasty was found. I realise that sounds crazy, of course it's not that I wanted them to find something nasty, but I feel so awful and sick that I was convinced that something would show up. I've been in a real mess with worry so no wonder my mind has taken over.

The neuro wants to get the the bottom of this before he declares BFS, more blood tests have been ordered including looking for heavy metals and RA, CPK, etc etc and tests that I can't even read, a lot of blood tests. At least the neuro believes me when I say that there's something going on, even though as usual I didn't twitch for the few minutes he was looking.

I've still got the same swallowing problem and burning electric tongue and mouth, got no idea what that might be.

A couple of weeks ago I mentioned here that I was getting some crazy twitching under my right eye, non stop twitching that lasted for about 2 weeks. Most of that has stopped now but since it stopped I have noticed that my eye brows have dropped a little (which my wife can also see) and there's a constant pulling sensation across the bridge of my nose which feels awful. My face feels puffy but I can't really see any puffiness. I'm getting a lot of facial twitching which I really hate. And of course lots of twitching elsewhere as well. I reckon I've fried my nervous system from a bad lack of sleep for many months last year, sleeping is currently about 8 hours per night which I hope will continue. Perhaps I should try to sleep more??

I've also had a numbing feeling in my right forearm which has been making it hard to use the computer mouse. I'm also getting more and more deep pain in my arms and legs. Joint pain is also getting worse. I'm looking forward to get some blood test results.

So to sum up, another clean EMG which was done on both arms and tongue. No EMG on my legs though so I hope that doesn't matter (I'm still losing thigh mass mostly on the right thigh). I showed the neuro the right thigh and he didn't seem concerned. Another thing I've noticed lately is that I'm making a lot more typing mistakes as my right hand becomes stiffer and fingers on my left hand have joint pain, the same type of pain is in both feet and my right ankle and right wrist.

BFS, really?

Sorry to bore you all, just thought you might like an update. At least my stress levels are down for now. God bless you all.
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Re: Worried & need advice/support

Postby Yuliasir on May 22nd, 2014, 7:27 am

Well, with fresh good clean EMG in the problem zones (tongue and arms) you may really consider it is something other than MND. We do not know BFS or not (seems like your doctors rather believe in BFS) but defiitely not someting related to bulbar MND onset.
should you have MND with over 6 month swllowing troubles EMG would be clearly indicative of denervation/reinnervation and other signs of damage. We know from some recent examples that EMG picks up worrysome signs even when the patient is not a patient in fact, i/e/, has little or no complains for any specific damage.

So at least you can say that your swallowing troubles whatever they could be are not due to loss of swallowing refelx and does not involve neuronal damage (as your glottal nerve EMG is clean).

Sorry to hear you stillsuffer symptomes but you may be now qute sure they are not related to nerve degeneration.
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Re: Worried & need advice/support

Postby leroyb on May 24th, 2014, 11:54 am

That's good news Gary.

From a selfish point of view it's good for me too because I have ALL and I mean ALL of your symptoms.

Seeing a neuro on monday and I'm at the point where if he says "you're ok" my instant response will be "bull****"

I am 1000% convinced I am doomed but so far i am not meeting the failing not feeling criteria.
I just feel like I am falling apart bit by bit.

I really think my left quad is screwed. It feels weak and has an electric motor sensation in it 24/7. However that same quad can do a one leg wall sit for a minute (25 seconds when i started testing it 6 weeks ago). WTF. Makes no sense at all.
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Re: Worried & need advice/support

Postby Yuliasir on May 24th, 2014, 11:13 pm

Leroy,
I am sure if you stop do one leg sits, your quad would feel better eventually.

part of unpleasant feelings we experience (pain, soreness etc.) is due to selftest and in general due to a bit nervous mind in regard of muscular activity.

I remember this winter we had a fellow lady member who was sure she has atrophy. It appeared she had torn her quad muscle because she came to some dance training and started doing excersises without proper warming up.

So the less we torture yourself in order to prove we are not failing, the better.

believe me, ALS people do not fail to make one leg sit. Well, of course they fail to do it. But in fact they fail to do much simpler things, like hold the raised foot parallel to the ground, or walk on toes not for miles but for a few steps, they can not properly hold a key in the hand - and this is a test, not the ability to hold a 3 kg load with one finger or move heavy item with two of them.

But no one of BFS people is usually not satisfied (me too) with a simple "hold my finger" test the neuro usually makes for hand strength or "walk two steps on heels and toes" for a leg muscle. We usually go for lengthy and absolutely forced selftesting, and cause sometimes quite a damage to our bodies, not saying about pain and other inconveneince.

Wish you good result on Monday
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Re: Worried & need advice/support

Postby leroyb on May 26th, 2014, 4:13 am

Thank you Yulia.

Clinical exam perfectly normal. Diagnosed BFS and I am leaving it there :)

Sorry for hijacking your thread Garry - I'll just sidle on out right now :).
Last edited by leroyb on May 26th, 2014, 6:13 am, edited 1 time in total.
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Re: Worried & need advice/support

Postby Xina535 on May 26th, 2014, 6:01 am

leroyb wrote:Thank you Yulia.

Clinical exam perfectly normal. Diagnosed BFS and I am leaving it there :)



hey Leroyb, congrats! :D
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Re: Worried & need advice/support

Postby readytocheckout on May 27th, 2014, 5:56 am

leroyb wrote:Clinical exam perfectly normal. Diagnosed BFS and I am leaving it there :)

Sorry for hijacking your thread Garry - I'll just sidle on out right now


Great news Leroy. Hijack as much as you want, the more the merrier!
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Re: Worried & need advice/support

Postby readytocheckout on May 30th, 2014, 7:53 am

Just wondering if anyone's got opinions about hair testing (for minerals & heavy metals etc). In my quest to try to find a reason why I twitch I probably wasted money in getting a hair test done, but among a few things found one of then was a high calcium to magnesium ratio.

Both the calcium and magnesium levels were within "limits", but the ratio between them was too high. The lab that did the hair test knows nothing about my history, and in their report they said that this high ratio can cause muscle spasm and twitching. I've been taking magnesium for quite some time, I was told to by my doctor to help with cramp. I was also taking calcium but the doctor told me to stop that because taking it for too long unnecessarily could be bad for arteries.

I guess I seem little cynical about the hair test because I don't really see it as an accurate test like blood testing, so why did I get this done - good question. I guess I'm desperate to feel well again.

And just a follow up to my EMG last week: did it help with my twitching - of course not. Was it clinically required - no as it turns out thank God. Did it help with the mind - a little (underline little). I guess what I got out of my EMG was the fact that I've been twitching for over 12 months and still nothing bad on the EMG so I guess that's gotta be a good sign. To be honest if you can believe your neuro's diagnosis of benign after only having a clinical then don't get the EMG, it's not a pleasant experience but for someone in my state of mind with new symptoms it has definitely helped me to accept this BFS a little more as benign, even though it feels nothing like you'd expect "benign" to be like. Now if I could just figure out the swallowing problem!

Some of my symptoms are really bothering me but that's for another time.

Thanks to everyone on this board - you're all awesome.
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Re: Worried & need advice/support

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