Status
Not open for further replies.

tom1108

New member
Joined
Dec 17, 2018
Messages
2
Reason
Learn about ALS
Country
PL
State
Poland
Hi, first of all - thanks in advance for spending some of your precious your time reading my long story.

I'm 25 and last 3 months of my life was the worst (so far) , fear-ridden time I have ever experienced.

Everything started on the 1st of October with a constant, mild headache with painful "spikes" every time I coughed. After a week I got extremely anxious for I have never experienced something as intensive before. Thankfully I got in touch with a family-friend neurologist. After a brief exam he said there is nothing to worry about, nevertheless I might want to get more detailed examination at hospital just to be sure. This insteard got me worried - I started experiencing dizziness, vision problems, shakiness and problmes with sleeping. A week later, after three days long hospital visit during which I had multiple blood tests, an MRI of head and cervical spine section, lumbar punction and neck blood vessels USG, the only findings were a small, insignificant C5/6 disc herination and a significant increase in total CSF protein level (101, expected 0-45). MRI was clean and CPK was OK. I was also diagnosed with anxiety and depression.


After about a week the headache was gone and in the meantime my left arm and leg started feeling a bit weak, followed by numbness on my left cheek. This feeling of weakness is acompanied by muscle and joint pain, especially when walking and after workout. I also started to experience twitches all over my body. Left side muscles under stress are rather shaky compared to my right side. This state lasts for over a month now and I dont really feel any better, the symptoms are all the same of worse than before.


Apart from shakiness and pain, the percieved strength of my arms, fingers and legs is pretty much ok - I can run as much as used too, lift same weight and so on. I've been to psychiatrist, got SSRI and pregabalin, both are really helpful, but I still am very anxious and can't stop thinking about these symptoms.


By the end of November I also went to a different neuro for an exam, hoping he might notice something. He went through every muscle looking for abnormal reflexes, ordered me to flex my arms and legs, stand on my toes, pull his hands, etc. Everything was all right. I asked him about the protein level, he said I shouldn't worry - I was tested for every possible neuro disease in hospital and had two different neuros examining me, which should only reasure me with my current diagnosis - axiety and depression. I asked him about ALS, to which he smiled and said I'm way too young for that and no neurological symptoms are present at this moment. Still, there are stories of people even younger than me suffering from this disease which fuels my anxiety.


Since I still feel face numbness and percieve weakness in my left arm and leg, should I keep pursuing doctors to get an EMG done, or there is really nothing to worry and I shouldn't bother them?

So yeah, thats pretty much it. Right now my life got to a point where I quit smoking, drinking and pretty much all the things I used to do, even feel a lot of anxiety when going out to meet my friends. My girlfriend is very patient and ignores my constant babble about being sick, which makes me feel abandoned and helpless.


Also, you should really see polish MND forums, the amount of misinformation they give is probably cause of 90% of my anxiety - they pretty much all say muscle pain, joint pain, fatigue and fasciculations are early symptoms of ALS - some of ALS diagnosed folks state that before weakness and atrophy, they had joint pain and paresthesias. I just dont know who to believe at this point...
 
Last edited by a moderator:

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,463
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
See here for forum position of sensory issues/twitching, etc.

https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html

You won't receive a different answer that what you read in the above from anyone here taking the extra time to answer your questions. Two neuros and multiple tests during a hospital stay haven't reassured you- it's clear you have an anxiety about ALS. Strangers on the internet are unlikely to reassure you if you're this focused.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,662
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
I think you have good insight into the idea that you likely had a transient issue -- a virus, sleeping wrong, what have you -- and your mind + whatever misinformation is on line has taken all this and run with it. But clean exams and tests are still what they are. I would consider bodywork to elongate the muscles of your neck and elsewhere, e.g. Pilates, ballet, tai chi, yes, even though you are a guy, maybe get some massage from a qualified MT, do a hot tub or ice bath, whichever feels better, etc.

But that is about your body -- your anxiety even with an SSRI is high, which suggests exploring another class of antidepressant, titrating the one you are on, seeking counseling past the psychiatrist you saw/see, etc. Good sleep is key as well.

Also, pregabalin has its own issues esp. at higher dosages, so I would monitor what you think it's doing and considering tapering down under medical supervision, if your dosage is high.

As for seeking an EMG, if it would really convince you not to worry, of course, we would say do it, but given that I'm not sure you can say that right now, so maybe start with some of the other angles first and see if you really need it to know what I think you already do. Still, if you have additional numbness, headaches, dizziness, you should always seek medical help.

Best,
Laurie
 

tom1108

New member
Joined
Dec 17, 2018
Messages
2
Reason
Learn about ALS
Country
PL
State
Poland
Thanks a lot for your replies. I feel somewhat relieved, but I'm sure anxiety will eventually come back. I think I should try to stay of the internet completely. Igelb, I will follow your advice and during my next visit I'll ask my prychiatrist to alter my medication. I also need to follow my frieend's and doctor's advice and start swimming again (I used to swim for an hour twice a week). God bless you all and have a wonderful Christmas season.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,528
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Gee, it's amazing that you mentioned that you have quit smoking.

In the previous Thread I mentioned the effects of Vaping... smoking.

Good for you that you have quit smoking.... and drinking. Both.

That's some awesome will power to do both together.

Hope you have a pleasant Christmas.
 
Status
Not open for further replies.
Top