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New Member with a lot of fears

PostPosted: August 4th, 2014, 6:28 am
by Pinguino
Hello everybody,

My name is Peter, I am a 33 year old Male from the Netherlands.

Since almost two Months I really have strange symptoms that scares the hell out of me.
It started with tingling in extremities, burning sensations in my legs and arms etc. I googled the systems and this could be MS. After I read all the typicle MS systems it seems like I created them all! I get pain in my eye, urinating a lot, my legs felt week and terribly tired.

Went to GP and he send me to Neuro which i could see after 3 weeks. In this 3 weeks my complaints went on and off. And i get these fasciculations in my legs end feet. I google again and since now I am really affraid of ALS.

When i visit my neuro he did a exam and told me there was nothing to see but for my reassurance, I will have a EMG and MRI next Monday.

The strange thing is that i have the feeling that my left side is really weaker. Last two weeks my left leg feels weaker but since two days my left arm and hand feels weaker. And my legs feel oke again??? strange!

I also have pain in my muscles very quickly and other strange sensations. And what also bother me is that I get tired very fast.

I have a lot of strange symptoms.

I was diagnosed a half year ago with GAD and get treatment by a psychologist but I hever had this feelings before. My anxiety is enormous now and I wonder if I create all this strange symptoms myself.

Still one week before I get my EMG. in the meantime I have read a lot on this site and I really hope it is no ALS but "only fear or BFS"

Btw i also was diagnosed with a B12 shortage in September 2013 and get injections once a week and I have a Vit.D shortage. Could this also create the systems I have now?

This was my story. Sorry my English is normal much better but since i have fear i am not able to think clear.

Cheers.
Peter

Re: New Member with a lot of fears

PostPosted: August 4th, 2014, 2:12 pm
by trustme78
Hi Peter,
I have had almost the same things you have. Burning sensations, tingling etc. And finally vibrating (right foot) and twitching (mostly in my calves).

I have some short advice for you:

1. Stop googling your symptoms.
2. If you need to do "research", go through the archives of this forum.
3. For MS read the posts of SuzyQ.
4. Burning, tingling etc is not a symptom of ALS (you can read that in the archives)
5. Twitching is not really a symptom of MS (you can read that in the archives as well).
6. Perceived weakness is NOT clinical weakness.

I am absolutely sure that you will have a clean MRI and a clean EMG. Please do us the favor and tell us about it - after you get the results. You will find stories like yours over and over in this forums. I don't have much time but I just wanted to write a few lines because no one else has answered yet. I know how you feel - I have been there myself. And so have many others here.

Take care!
Volkmar

Re: New Member with a lot of fears

PostPosted: August 6th, 2014, 6:03 am
by Pinguino
Thank you for your reply Volkmar.

I really hope that the EMG will be clean.

The strange feeling in my left arm make me go nuts. I really cannot explain what I feel. The feeling is inside my arm. Feels weea and shaky. Stupid thing is that the symptoms changing. Last week I had this feeling in my left leg and was all the time checking for weakness there. No this same for my arm and my leg feels normal again!

Some days I have strange feeling in my throat and I am affraid of bulbar A..

Ooh hope in it Monday soon. And then I have to wait till Friday for the results.

Re: New Member with a lot of fears

PostPosted: August 6th, 2014, 9:23 am
by Andreas
Hi Peter,

I complete understand your fears. I was at the same Point until the last 2 months.
But time is your friend and you will lern to accept your restrictions within the next months.
The changes of your symptoms are positive and allows you to go away from your A*S-fear!!!
In A*S symptoms never go away until the affected muscle is completely dead.....so take that as a very good sign!

I know it is hard to think so but if you have a clean clinical exam, an EMG is not needed to rule out the bad desease.
A good neuro recognizes any kind of MND easy by doing only a clinical exam. The EMG is normaly taken to confirm a clinical expectation or to take your anxiety away.

I am complete sure that your EMG will be ok. And you do not have to be afraid. The EMG is a near painless examination if you do it right.
The only important thing is to relaxe your muscle and do not look at it due to the *beep*! Than the insertion of the needle is near painless.

Be in mind that BFS is a great list of symptoms which may change every day. So donĀ“t be afraid again if you perceive new symptoms or if existing symptoms getting more worse. That is all a part of BFS. BFS is hard to accept and can make your life really bad but there is a Chance that it will go away as it comes....

My symptoms are getting more worse every day since near one year and I have still no MND. My neuro says that BFS goes until the badest point which can be after years and than it will stay as it is ore it will get better.

Andreas

Re: New Member with a lot of fears

PostPosted: August 8th, 2014, 3:27 am
by Floydian
Hi Peter, check your p.m.

Re: New Member with a lot of fears

PostPosted: August 11th, 2014, 4:04 am
by Pinguino
Hello

This morning I had my MRI scan and EMG.

They only made an EMG of my right hand. is this enough to rule out ALS? Since the troubles I experience lately are mostly my left leg/arm...


Thanks in advance for your reply

Re: New Member with a lot of fears

PostPosted: August 15th, 2014, 11:23 am
by Pinguino
Today I have get the results of my hand EMG. Everything was fine.

Could this totally rule out ALS? (according to my previous question)

Re: New Member with a lot of fears

PostPosted: August 15th, 2014, 2:15 pm
by Pascal35
I started exactly like you... Now, 9 months later thinking back i also felt almost all the ALS symptoms: weaker right arm (not anymore), weaker right leg (not anymore), bulbar issues (still trying to get off my mind) --- had numerous clean EMGs in all the body parts and in addition my last Neuro exam was perfect, so i guess you must not worry too.
We are just crazily Hypochondriacs and I'm sure that Twitching has a lot to do with our mind.

So even if i am still worried and several times in panic mode i still believe that there is no reason to fear. It's all on our head

Re: New Member with a lot of fears

PostPosted: August 19th, 2014, 3:25 am
by Pinguino
Since one week I have new symptomes that scared me. I am so affraid I have bulbar.

The symtoms I have are a lot of saliva, pain at the back of my tongue, difficult to pronounce words. pain in my throath and my voice sounds different. like i have a cold.What can this be?

Last Friday my EMG of hand was clean. All the other symptoms i had in the past are gone or don't bother me anymore. But I am really fixating with my mouth now.

What is an easy test to rule out bulbar? Is there any? I am doing all kind of things with my tongue and well my tongue hurts i think i am still able to use it as before.

Re: New Member with a lot of fears

PostPosted: August 19th, 2014, 9:26 am
by Floydian
Hi Peter, have you checked your p.m.?

Re: New Member with a lot of fears

PostPosted: September 19th, 2014, 12:10 pm
by Pinguino
Hello

Since last couple of days i am back to where all my symptoms started in June.

I have really painfull, burning skin in my hands, arms and feet. I am scared again for some neurophaty and the pain really drives me crazy.

Is this also bfs? Can this be caused by stress? And how will this stop?

i was planning on starting with citalopram. . Will that help?


Is this also bfs? Can this be caused by stress? And how will this stop. This is really

Re: New Member with a lot of fears

PostPosted: September 19th, 2014, 12:40 pm
by Yuliasir
Hi Peter
usually burning sensation in the limbs (and sometimes in the tongue too) is due to lack of B12 and other B group vitamines.
B vitamine level is known to be lowered during stress, and it looks like at least some of us have certain defect in genes related to the low absorbance of B12 from guts, therefore chronic avitaminosis.

I would advice to check your B12 level in the blood ad if it would be rather low, consider some supplements (ask your doctor).

Re: New Member with a lot of fears

PostPosted: September 19th, 2014, 12:47 pm
by Pinguino
Dear Yulia,

Well.. since one year i know that i had a b12 shortage. But back then i did not had any neurological complains. Then my complains where much more psychological.

Since one year i get injections already. In the beginning two times a week and my doc told me back then to have 2 inj. a week for a year.. since march i did not take them so often.. once every two weeks. But since June back to twice a week.. so i cannot imagine that this could have something to do with my b12. I had b12 test in august and ofcoure it is very high now.

Re: New Member with a lot of fears

PostPosted: September 19th, 2014, 12:53 pm
by Yuliasir
then probably you have hypervitaminosis... Not sure if it can cause neuropaty or neuropaty like conditions but who knows...

Re: New Member with a lot of fears

PostPosted: September 19th, 2014, 1:29 pm
by Pinguino
Never heard of that.. according to my doctor you cannot take b12 to much..