Symptoms getting more worse from the beginning to now

Information about how to manage or reduce the severity of BFS symptoms

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Symptoms getting more worse from the beginning to now

Postby Andreas on August 9th, 2014, 6:14 pm

I got the diagnosis of BFS 1 year ago. I felt better from month to month because of the reduced chance that my symtoms are MND releated.

But there is one point that hampers me away from thinking positive.
My symptoms are not getting better, they are getting more worse from month to month.

There is a small list of symptoms that are gone away like swallowing and speaking issues.
But mainly my list of other symptoms is getting greater by time.

I think the soles of my feed develop dents between the muscle of the great toe an the rest of the sole. Does anyone have the same?

Does anyone experiences the same like me after that period of time without major improvements of any symptoms? Schould I take that as a bad sign?
Sorry for that questions but the progress of my symptoms make me feel extremely bad today.....
I´m in Panic that I will fall in the hole of fear again.....
My neuro said that the increasing of my symptoms are 100% bfs-releated and can go so on for many more months. But now I am not sure that she will only reassure me.....


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Re: Symptoms getting more worse from the beginning to now

Postby trustme78 on August 10th, 2014, 4:44 am

Trust your neurologist. It's crazy to go to the internet to look for reassurance when you have a clear diagnosis from
a doctor who examined you. Accept it and move on. I know it's easier said than done - have been there myself.
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Re: Symptoms getting more worse from the beginning to now

Postby Pascal35 on August 11th, 2014, 5:09 am

Hi Andreas,

I have read several of your posts and i find a lot of similarities with my story.
I am 9 months into it, i am 36 years old and i have also been to numerous Neuros (15) and had numerous of EMG's (around 20!!!).All of them reassuring that is not ALS. Its actually nothing.
Most recent one a few weeks ago which included the tongue which was again clean.
I was working out daily all my muscles to check the strength.
I also had the feeling of improvement (i also took Benzos) but when a new symptoms appears then i am again into panic mode.
Over the last 2 weeks i feel that i have speech issues and for sure i feel a twitch in my tongue when i stretch it and then place it relaxed.
The doctors have witnessed it and said that its not a typical twitch but something like a motor unit movement which is caused because i move the tongue....
Noone else realizes my speech issues.
I am recording myself reading articles just to be sure that my voice and speech is fine. I lost my mind completely!!!
Anyway, i read some ALS stories from a person that had speech issues (which he was the only one to realize) and ALS appeared after 2 or 3 years. Again PANIC!
So thats where i currently stand. I totally understand your fears and i totally believe that we can't continue like that.
We are stuck in every part of our body and every little twitch makes us crazy...
I am generally a person who is afraid for illnesses but this time i have really been into my worst nightmares...
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Re: Symptoms getting more worse from the beginning to now

Postby Nytviolet on August 21st, 2014, 6:59 pm

I know how you feel. I've had BFS for 17 years, and was accustomed to it, then about 4-5 months ago my left arm and leg began to feel easily fatigued and would ache. I also noticed my left calf is 1" smaller (I've been shaving these legs for 38 years, so I noticed it)...but no tripping or coordination issues. My symptoms led me to this website, and I see that many folks have subcutaneous fat loss in certain muscles. Although I've never had an EMG, my neuro did strength and reflex tests, did not seem concerned, and said "I'm sure it's not als, but come back in a month for regular follow up." I guess my point is this: our bodies are not static blocks of stone, but are always in flux (varying levels of hormones, adrenaline and other chemicals along with shedding and renewing of every cell in the body. If u have health anxiety like me, you tend to focus on any change and assume the worst. I'm giving myself another month to get beyond this, and am open to trying a mild antidepressant (can't hurt). The mind is a powerful thing. Wishing you peace and joy. Hugs
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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