Hi there, new member introducing

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Hi there, new member introducing

Postby Sander on February 9th, 2013, 5:17 pm

Hi all,

First let me introduce myself:
I'm Sander, 41 year old and live in The Netherlands.
I'm following this forum for some months now and felt the need to join.
I hope that by doing this, I'm able to overcome my anxiety and fear of ALS.
It has become a long story, sorry for that...

It all started in June last year. An uncle of mine (about 70 year old, father's side, no other occurrences in the large family) got diagnosed with ALS beginning of June.
Although I don't have any contact with him, you can imagine that such a thing has a major impact in the family.
About a month later I started to notice twitches in my right calve. Well, knowing ALS from my uncle, I went down the road to extreme fear that is so well known to many of you.
I soon started twitching everywhere, including legs, arms, hands, tongue, jaw and even very private places...
I also noticed, or at least thought to notice, difficulty articulating, had trouble walking (weird stiff feelings in legs) and felt that my hands had less fine motorics skills. Writing and typing felt strange.
Started to see my doctor, I believe you call it GP in the US, mid July.
Wen I told her my story, including uncle with ALS and the fact that I have had a very stressful year because I have started my own company, she was very certain that it was all stress related and nothing to worry about.
To ease my mind she referred me to a neurologist. I had several checks by him including MRI, blood, needle EMG in legs and arms and the usual strength and reflexes tests. All was OK and definitely not ALS or any other disease he said. He also related it to stress. The EMG was late October, so about 4 months after twitching began.
At that time I also started to have swallowing issues. Every time I drink, some fluid goes down the wrong way and I need to clear my throat or cough. The neurologist didn't think much of that as all testing he did pointed away from anything serious.
I also started to have sessions with a psychologist who tried to convert my irrational thoughts to more rational ones.
The medical road is now over, I had my last session by the end of December.
It went OK for about a month, but recently the fear of having ALS is strongly back again.

Some things I notice, besides from twitching all over body:
- Increased cold intolerance. Slurred speech after drinking milkshake for instance. And chewing got difficult a couple of weeks ago during a couple of hours in -8 deg C. Back at room temperature nothing is wrong, and although I always experience difficulty talking already for 7 months now, no one in my environment ever notices something.
- Now for 6 months the drinking/throat clearing issue as mentioned before. Recently I also notice that actual food swallowing feels harder, and some types of food get stuck in the back of my throat. Weird and scary... Swallowing makes some strange clicking sounds... Of course in my mind bulbar onset...
- Very quick fatigued legs. After a half an hour walk or bicycling my knees are really literally shaky and legs feels weak and fatigued. That is fine again after a few minutes. I also like to play tennis and although I have the fatigued leg sensations during a game I can run very quick and without any problem towards a drop shot from my enemy :evil:.So I think that is OK isn't it?
- Burning sensation in tongue. Sometimes really bad and real painful. Last weeks not that apparent though.

As with many of you I do many strength checks (and even other checks such as keeping track of my leg diameters to see if there is atrophy, yes, sad isn't it...) and if I have to be really honest to myself I must admit that I don't have actual real weakness (I think...) and atrophy. I run up the stairs like I always did without a problem.
The things that worry me the most now are the muscle weakening effect in cold weather, throat problems with food getting stuck and swallowing liquids making me cough, and the shaky knees after some exercise.

That pretty much sums up my story in a nutshell, well a big one then, haha.
I'm not sure what to expect from this posting, I guess I just needed a place to share my feelings. Although I'm always in for a positive remark that says not to worry about ALS :D.
My wife is currently in therapy for her fibromyalgy, so we both have our troubles and I don't want to overload her with my concerns over my own health... I think that's also a reason to seek some support from you guys/girls.

Anyway, many warm greetings from a snowy Holland,
Sander.
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Re: Hi there, new member introducing

Postby aztwitchy on February 9th, 2013, 9:17 pm

welcome to BFS. nothing of your story says ALS so take heart and enjoy life. You have all the common symptoms that so many on this forum complain of and we all have BFS. its not fun but its not going to disable or kill you.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: Hi there, new member introducing

Postby anita on February 9th, 2013, 11:13 pm

Hi Sander,
What you are describing is very similar with what many of us have. I can identify with practically all your symptoms and actually a lot more but still hoping I only have BFS. I was so surprised to see (on this forum) that I'm not the only one with cold intolerance. I was someone who always preferred cool whether. The air condition in my car was always on 16 C, and now I can be cold and shivery while the thermometer shows 26C. I still cannot believe it. And I get all the muscle stiffness and pain and twitches everywhere. When I see stairs I have to take them just to prove to myself I can do it, although my muscles are sometimes so sore. I feel I have troubles with swallowing and sometimes if I drink cold I could make a funny noise as the fluid goes down and the gullet is trying to pushing it down. I can't swolow properly if my head is turned to the side but is not getting worse and I think if it was MND/ALS it wouldn't wait. All these are very weird symptoms and they don't make sense and I try to keep it for myself as much as I can to spare my poor husband. And I twitch and twitch in all sorts of places and some days when it's really bad I think that by the end of the day I'll definitely have some weakness beacause it is not possible to keep going on like that. But fortunately nothing ever happenes. And it will be the same for you, beacuse we do not have ALS!
Regards,
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Re: Hi there, new member introducing

Postby Sander on February 10th, 2013, 1:57 pm

Thanks Anita and aztwitchy,

I appreciate your replies.
Do you or other folks think that after almost 6 months of limited but annoying swallowing issues (throat clearing/coughing after dinking) you would notice much more severe symptoms by now if it were ALS? Although I do have recently developed the phenomenon that some food gets stuck in the back of my throat....
Talking feels weird but to my environment sounds normal.

I think that shaking knees after some exercise might fall under the "exercise intolerance" in BFS?

What a weird thing this is... One moment nothing is wrong and a couple of months later you find yourself having all strange kind of things.
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Re: Hi there, new member introducing

Postby BFSBurger on February 10th, 2013, 2:11 pm

Sander wrote:Thanks Anita and aztwitchy,

I appreciate your replies.
Do you or other folks think that after almost 6 months of limited but annoying swallowing issues (throat clearing/coughing after dinking) you would notice much more severe symptoms by now if it were ALS? Although I do have recently developed the phenomenon that some food gets stuck in the back of my throat....
Talking feels weird but to my environment sounds normal.

I think that shaking knees after some exercise might fall under the "exercise intolerance" in BFS?

What a weird thing this is... One moment nothing is wrong and a couple of months later you find yourself having all strange kind of things.

Weird indeed. It sucks. But to reply to your first post - not so sure participating here will help your fears of ALS LOL. There's a lot of "scary post" dodging you will have to do. Find a way to skim posts for "ALS" before you read them, and that will help a lot to avoid the ones that cause undue fear.

Shaking knees is def exercise intolerance. Give it time. If you just started with this, take some time off and rest. Couple weeks or maybe a month. Let your body calm down as much as possible. But plan, after this stage, to get back to very mild exercise. Cut your weights by 50% or more, and take it very easy. Your goal with exercise from now on will only be to keep movement going, and relax your muscle system and body. No longer to fatigue yourself.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Hi there, new member introducing

Postby jerry2 on February 10th, 2013, 2:22 pm

I definitely started to have cold intolerance after few months into twitching. I can not type on computer if I return from cold, 3 weeks ago I hardly could talk on -8 degrees C etc... You were cleared by doctor. Your swallowing issues are amplified by focusing on them. Ask your friend if he has any hard time swallowing, I bet when you will say that to him he will have some problems with swallow. If we made ourselves aware of the swallowing, we have problems, all of us.

Your wife has fibro? I am suspecting I have it to. Fibro symptoms are not that much different from BFS, a lot more pain... Does your wife has simmilar symptoms than you do?
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Re: Hi there, new member introducing

Postby Yuliasir on February 10th, 2013, 3:02 pm

Hi Sander,
absolutely clearly 100% stress condition as per your description and as per your doctors' opinion.

severe anxiety and stress make all issues you describe and really nothing in your description resembles any bulbar issues which are never subtle and in 6 month ususally ALS victime with bulbar onset has to be on gastrostoma...
ALS also never has various onsets at a same time, while we anxious people always have legs, hands, mouth issues occuring simultanously :)

In fact it is common to have slow and sllured speech when you spent 2 hours at -8 (consider wind and humididty, you may easily count down to -15 C). Stressed people really have excersise intolerance and may have strange feeling during normal actions like typing or teehbrushing etc.

finally just compare your 70 years old uncle and yourself 40 years young man with at least another 40 years to live ahead...

I am 43 and I was in your shoes last year. Still have pains, cramps etc. but alive and kicking.
hugs
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Re: Hi there, new member introducing

Postby Sander on February 10th, 2013, 4:12 pm

jerry2 wrote:Your wife has fibro? I am suspecting I have it to. Fibro symptoms are not that much different from BFS, a lot more pain... Does your wife has simmilar symptoms than you do?


She has indeed a lot of pain, which is terrible to see in the one you love. There is also a temperature influence. During the summer the pain is less or even gone.
I notice a lot of similarities, also in the therapy she is going through. Much is about finding a new balance in life.
Concerning physical similarities, she also has something that could be labeled exercise intolerance. When I ask her what she feels in such a situation she finds it hard to explain. It is not really the pain that is limiting her, but her body just gets tired or something like that. If we are bicycling I often need to slow down because she is too tired to keep up with me, what never used to be an issue.
But on the other hand, she runs 10 km in an hour without a problem... So much for exercise intolerance I then think... But the fact is it is a strange thing, fibro.
She also has muscle twitching, but not the body wide fasciculation like twitches I experience. In her case it is more confined to lower arm and fingers, and causes movement of the arm or finger.
And also tremor when holding a cup of tea for instance.

The rheumatologist she went to mentioned that although they do not yet fully undersand what it really is, they think it is related to hypersensitive nerve endings in the muscles. In a way that seems more or less similar to nerve hyper-excitability in BFS??

Thanks for your reply, appreciate it.
Sander.
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Re: Hi there, new member introducing

Postby Sander on February 10th, 2013, 4:20 pm

@Yulia, thanks for your kind post. I have been reading many of your posts and always feel some kind of comfort after reading.
The strange thing with this all is that maybe deep inside my brain I know that nothing is wrong, it just needs to surface yet. My psychologist had a brief period of success and we stopped therapy in December. But lately I'm thinking of re-entering some anti anxiety therapy.

And please do go on telling me how young I am :lol:

Sander.
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Re: Hi there, new member introducing

Postby jerry2 on February 11th, 2013, 3:30 am

Thanx for your explanation. Fibro and BFS seem to have a lot in common. I also have terrible cold intolerance :-( From what you are describing she doesn't have twitching but jerking (myoclonus) or tremor.

Anyway I wish the best for her and for you!
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Re: Hi there, new member introducing

Postby Yuliasir on February 11th, 2013, 3:35 am

to be honest I feel I am still young :) I think partly because 4 years of therapy brought back to me a huge part of life and power to do many things and enjoy the life:)))
Therapy sometimes takes month and even years and of course it is often recurrent... wish you another success :0
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Re: Hi there, new member introducing

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