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help!

Postby German2 on March 9th, 2014, 9:17 am

After 6 month of fascikulation under my feet I have finally a decline oIf muscle there. the thing is that I had a muscle decline in my left hand too before that. and strong training brought the power back. Do you think there could be hope? Does anyone have an idea of what it could be? I had a clean EMG 6 month ago and saw 9 doctors in neurology saying it's nothing. but now there is this clear decline...

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Re: help!

Postby ShawnW on March 9th, 2014, 9:58 am

Does your physician agree with your observation? If you haven't seen him/her why are you asking a message board? None of us can examine you...look at you. Get an appointment...not because I think there is something bad going on but because you likely need a health care professional to talk some sense into you.
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Re: help!

Postby Tiber2011 on March 13th, 2014, 11:14 am

"Strong training" - how bulked-up are you?

If you're a really muscular person, your muscles aren't going to look like the Incredible Hulk forever.
Did you just not exercise? Eat poorly? If you have SEVERE shrinkage, then it could be one of many things.

Are you also taking performance enhancers which can cause twitching?
Do you work out too much, which can cause twitching?

How do you know you had a decline of muscle in your feet? Most people have slender feet, even body builders.

I'm starting to think you're a body builder who needs a vacation?
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Re: help!

Postby German2 on April 16th, 2014, 5:15 am

Hello again,

I will not much comment on the last message. Just one thing: no I am not a body builder at all. I just train my hands with a small ball. That's it.

But I will tell you my results of a visit at a leading ALS ambulance in Germany. I have 8month of twitches in my feet and a decline of muscels (confirmed by my physician) in my hands, which could be trained again. Strength came back. Now the decline started in my twitching feet, accompanied by pains in that muscle. So my story is a bit more than just twiching.

Here's what the ALS expert said,who is head physician there (I am sure it just repeats what most of you already know):
-First of all in most cases weakness comes before twiches
-If there are twiches there for 8 until max 12 month without functional restriction, it is no ALS. (In the latter time period development of ALS is that slowly, that you have a very long life periond left (though this is not much appeasing in positive case)
-ALS is not accompanied by pain, so if I have pain in the muscels, that's a sign it is s.th. different
-He could say that from a look on the way I walk, move and talk that I have 100% no ALS. He could see from his experience.

He examined me clinically and tested Nerve conduction speed. (No EMG,I don't know why) He is 100% sure - no ALS.
But he consumed that It could be s.th. autoimmune that one day can influence my nerve system. I should come back in a year or so. But not because of ALS...

The first week I felt very fine with that outcome. But after a week of lasting pain and twitches, I began to feel uncomfortable again...How can he be so sure....why he did no EMG again (my last one was 8 month ago). But I try always to remember, what the expert says and that I have had a lot of symptoms - came and go- which are not fitting with ALS and that- even in my case with muscle decline and twitches - there can be a lot of other reasons...Why is ALS so obstinately in my brain.
But this is a personal problem. I just wanted to let you know some expert experience.

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Re: help!

Postby Yuliasir on April 16th, 2014, 10:21 am

Look, German, ask yourself - why one of the top local specialists in ALS should do an EMG (which in fact is not a screening test but a test to see of you really have any deficite) to you if NCV (conductance test) says youare fine, clinical says you are fine and his experience says you are fine?

he sees tons of people every day (well, I think dozen or so). Most of them have MND. Some have ALS. Some are healthy. Do you think years of experience would not make him good enough in spotting even fine issues?

people can loss musclke mass for compression trauma, for immobilization, depression, starvation etc. and as you may geuss, if it comes to real denervation, no restoration of strength is possible.

yu prove by all your story that you do not have ALS. Why do you need EMG then? Just to doubt it in few days?
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Re: help!

Postby German2 on April 16th, 2014, 12:55 pm

Thank you for that response! You are right...I learned to see myself close to death because doctors told me one and a half years ago, they expect me to have a very serious disease - to that time they think I would have a serious autoimmune desease. I had several symptoms from blood circulations problems to neurological symptoms (thumness, temperature sensitivity, pain). Then the twitches began 8 month ago. They just found high antibody (ANA) - but no specific ones...So my brain learned to be in danger anyway,until the twitches came. And then situation went worse. It is not so easy to find back to normal live with all those symptoms and no clear explanation. So my thoughts stick to ALS in a way. It is so tricky. I even get medicine to get myself calm. I have got depressions in the end. But I don't give up and I am so thankful for your response, making me feel more positive

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Re: help!

Postby Yuliasir on April 16th, 2014, 1:11 pm

well, sometimes doctors make mistakes :)) but look - you had high ANA (which is not so specific and might be a result of error, or even a temporary condition) - and they did not miss it. They warned you.
Lucky you are that you had passed the term they set for you without significant issues - but how do you think your brain will react for being stressed with that? Surely twitches are minimum damage you can expect aftre such a huge stress.

At the same time it is highly unlikely that doctor you metioned will make a mistake with the other sign - missing symptoms of disease he knows wery well.

Usually people suffering like you need a professional help becasue you know, having been told that your life might be changed in 1.5 year - it is a HUGE stress, huge feeling of being helpless, huge burnde of WAITING FOR... and seldom people can bear that by themselves and find a new sense of life in such sufferings.
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Re: help!

Postby Tiber2011 on April 17th, 2014, 8:40 am

Yuliasir wrote:Look, German, ask yourself - why one of the top local specialists in ALS should do an EMG (which in fact is not a screening test but a test to see of you really have any deficite) to you if NCV (conductance test) says youare fine, clinical says you are fine and his experience says you are fine?

he sees tons of people every day (well, I think dozen or so). Most of them have MND. Some have ALS. Some are healthy. Do you think years of experience would not make him good enough in spotting even fine issues?

people can loss musclke mass for compression trauma, for immobilization, depression, starvation etc. and as you may geuss, if it comes to real denervation, no restoration of strength is possible.

yu prove by all your story that you do not have ALS. Why do you need EMG then? Just to doubt it in few days?


Yulia is right; I live in the USA and I would rather be tested by a doctor in Germany over a stressed-out American doctor.
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What the brain can do to you

Postby German2 on April 17th, 2014, 11:33 am

Hello!
this is an excellent and very helpful forum so maybe I can contribute a bit with a personal story of what tricks the brain can play on you:
I was facing the strong suspicion of having a serious autoimmune desease and visited two hospitals. They found high antibodies but nothing specific. "risk patient".
Leaving the hospital towards home "twitches" started in my legs and feet. As if my body cannot accept of finding anything.

Some days later I could not feel my left arm. I could move but not feel.
Gorge cramps started, making me drive to the hospital in the middle of the nights for several weeks.

Then an orthopeadic told my I might have ALS in a very early stage which no one would be able to prove.
It did last two weeks until I could no longer feel both arms, both legs and could not swollow any liquid.
I had to go to hospital for permanent infusion. I felt very close to death....felt like I have just a few days left. Believe me...
The doctors reviewed all my reports and found....it is all in my brain. And then...all of a sudden....I coud swollow again and slowly use my arms (my left hand lost muscle and the reason is still unknown but it is not ALS).

That shows what the brain can do to you. The twichting in my feet still last. And I have pain and my muscle indeed reduce but it is no ALS as I have learned from 4(!!) neuro muscle ambulances.

I have antibodys against my thyroid. Maybe this is a trace....And it is still difficultto accept for me that I don't have to die in a few years.
But maybe it helps you to see what the brain can do to you and plays tricks on you.

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Re: help!

Postby Yuliasir on April 17th, 2014, 1:57 pm

So German, you may have sublicnical hashimoto disease? Autoimmune thyreoidite?
Quite possible diagnosis for some of the fellow shere, believe me :)))

I did not tested my ANAs, but doctors suspect I have sublinical one (diffuse nodes in the TG). my mom has quite clinical one :) so I may have it too.

Your story is amazing, really. brain can play bad tricks.
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Re: help!

Postby German2 on April 17th, 2014, 2:25 pm

Yes, one blood testing showed antibodies according to hashimoto. tsh is still ok but changing much between minimum and maximum ...maybe this desease caused some of my problems. ..
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Re: help!

Postby Yuliasir on April 18th, 2014, 12:13 am

My own is also chaning. TSH level depends on your physical condition, whether you had slept enough, time of testing etc. The fact you have it fluctuating means rather you are OK. Should you have problems with pituitary gland (releasing it), it would be consistently low or high, on my point of view, and your thyroid symptomes would be more prominent.
You may aslo asssess your thyroid gland function (free hormone, bonded hormone and pro-hormone).
also I must admint that Hashimoto is not life limiting, neither has bad consequences (too bad I mean) but it may casue general lowering of thyroid function which causes depression and low mood. High function (possible at early hashimoto stage) causes anxiety and twitches. Cramps are also possible.
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Re: help!

Postby Yuliasir on April 18th, 2014, 12:20 am

By the way your orthopedist was... well, NOT CORRECT :))
Also I believe he did not follow medical ethics saying that to you. Especailly if such diagnosis is not his or her professional speciality (as far as I know orthopedists are equivalent to middle level practitioners, not to MD).
Experienced doctor told you at once you do not have it :)))

As we can see on this board, MND which suspectedly may turn itno ALS is in fact diagnosed even before the patient has striking paralysis. EMG is VERY sensitive test, NCV also good one (it shows conductance of your nerves which is strongly impaired in case of MND and traumas), and good doctor spots suspicious refleses changes even when the patient still has no significant complains.
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Re: help!

Postby J4son on April 18th, 2014, 12:55 am

Yuliasir wrote:By the way your orthopedist was... well, NOT CORRECT :))
Also I believe he did not follow medical ethics saying that to you. Especailly if such diagnosis is not his or her professional speciality (as far as I know orthopedists are equivalent to middle level practitioners, not to MD).


Orthopedists are medical doctors, and often surgeons. They are doctors specialized in the skeletal system. My knee surgery to rebuilt a torn ligament was done by an orthopedist.
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Re: help!

Postby German2 on April 18th, 2014, 3:43 am

Anyway..the neuro doctors all got very angry abot this suspected diagnosis of the orthopaedic doctor. for me it had very bad consequences of anxiety and worse symptoms...hard to tell what i felt. i went through hell. i still have lots of symptoms which cannot yet be explained. pain, strange muscle feelings (somehow crunchy ore like there is voltage on my twitching foot, numness in my hands, low blood circulation in my hands leading to my skin is looking as too big an has wrinkels, and last but not least one foot cave is getting deeper and the muscle there hurts sometimes). But ilearn more and more that this all cannot be als symptoms. but this is a process hoping to bring me back to normal life.
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Re: help!

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