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PePe

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Joined
Aug 9, 2013
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5
Reason
Learn about ALS
Country
PL
State
Krakow (Cracov)
City
Krakow (Cracov)
Hi.

I would like to introduce myself. My name is Peter and I am 29 years old. English is not my native language so please ignore some errors on my side.

I am under diagnosis for about one month. Everything started as some kind of problems with my spine/back and hip. For 2 days pain and problems were becoming bigger. At peak for about 30 minutes I even had feeling that I am not able to fully control "Sphincter ani muscle". I was afraid that I have some kind of issue with spine like "Transverse myelitis" or something similar. Additionally I really felt bad, fatigued. But eventually everything started to going back to normal.

And then, few days later, I started to feel that my legs were somehow weaker. During normal walk I had feeling that I hit ground really hard with every step. Even short walks were exhausting. I felt good only when sitting on coach or laying on bed. As before I really felt bad, fatigued. In the meantime I performed MRI of spine LS area (results were very good. Some minor issues typical for people at my age working behind desk) and visited 3 or 4 doctors. Most of them said that I am freaking out about my legs and it is just my feeling and gave me some pills with Meloxicamum for spine/hip issues.

Unfortunately after 2 weeks my legs in my opinion were still not good as they should be (I am not an athlete but I live on 4th floor and often take a walk to my office which is ~2 km from my flat). In the meantime I performed MRI of spine C area and head (brain). Again spine MRI was without issues. In brain 2 very small Demyelinating changes were observed, marked as "not typical to MS". Rest of parameters were OK. Again most of the doctors said that I am just freaking out. But some of them are more interested in this case. Now I am waiting for EMG. In the meantime I observed new issues with hands and left thumb.

Few words about my issues. Legs weakness is perceived by me because of 2 things. 1st is general fatigue after walking. 2nd is that during movement some muscles start to "tremble" somewhere in the middle of movement. You know just as when "big guys" at the gym are lifting some extreme weights. But to me it happens during much more "normal" situations. As mentioned earlier after a week or two similar situation is related to my arms. Biceps trembles when I am moving hand for example from the area of my chest to reach something. But what I observed today and made me really scared is my thumb. For some time I felt some kind of inconvinience in my left thumb during typing by since I am a software engineer and a gamer I was ignoring it. I thought It was just natural reaction to overuse or maybe issue with Nerve being pressed. But now I observed that my left thumb has somewhat limited movement compared to right one. Difference is not big, it is not like complete paralysis, but in some cases I have limited control over parts separated by joints. You know a little bit like in toes. That sometimes you move all parts at once even I you would like to move only one part. I can post photos or movies.

In the end I am really scared because:
- Generalised fatigue
- I feel that my legs are getting weaker
- I feel that my arms are getting weaker
- No sensory symptoms
- My thumb is somehow damaged and in some positions other fingers of left hand starts to tremble/shake
- I have done 100 different blood tests to check if anything else is going wrong in my body, but all tests were OK
- MRI of spine if OK
- A year ago I took 5 shots of Verorab vaccine (againt Rabbies) after I was bitten in Egypt by unknown cat and there were reports of unusually young people dying for ALS in similar circumstances

I know that trfogey and other people may be sceptical about vaccine effect and "feeling weak". But on the other hand when talking about vaccine - 2 young girls died for ALS after vaccine even thou ALS is rare and typical for older men. I think they should prepare some kind of statistics related to such events. When talking about "feeling weak" take a look at report "The onset of amyotrophic lateral sclerosis". It shows that sometimes at the very beginning EMG and CK maybe pretty OK, but what poeple are "feeling" is real, just it is not visible in lab tests yet.

So at the moment I am 99% sure that I have ALS or some kind of aggresive and progressive MS. And I am really terrified. I don't wanna die so young and in such way. I am definately concidering suocide after loosing ability to control my hands... Not being able to even play video games or take something from the table. Too scary to even think of it...
 
Without a diagnosis suicide in my opinion would be dumb. Shame on you for even thinking that. People on this site live with this everyday and have much more serious problems than you do and still find joy.

You have only been having problems for a month and at this point it could be anything. Let the drs do their jobs and find out what is going on before you do anything rash. Sometimes these things take months and even years to get a diagnosis on.
 
Sorry fot that. I should not write anything about suocide. My bad. I cannot find edit option so I cannot delete this part of my post...

BTW now it is 3:00 AM in Europe. I've just woken'up in the middle of the night with the feeling that I need to take a breath. Normally it never, ever happend to me earlier. Even during strong stress and other situations affecting psychological side of man. But the Doctor said that it cannot progress so rapidly... So now I don't know what to think. If my brain really plays such tricks on me or is it Marburg MS or vaccine didn't work and this is some kind of rabies but slowed-down... I feel like my muscles around spine on T level are weak. Could you please tell me did anyone had similar issue I mean breathing issues togother with feeling of weak muscles on T level?
 
All you can do is wait for the emg, and while you are waiting you need to relax. Anxiety and stress can make this worse. You could have been dreaming and it woke you up. The emg should hopefully help to tell you what is going on.
 
OK I will post a new message after EMG. Now I also observed that my rib cage does not move almost at all during breathing. I think that it used to move in very visible manner. I hope everything will be OK. In case of no more posts from my side it means that I am not alive anymore...
 
PePe,

I wonder if your doctor observed clinical weakness, or if it's you perceiving weakness. Was the EMG scheduled at your request? I suspect you've been lurking here awhile and scaring yourself.

It's astounding to me that you state you don't want to die at a young age, but are considering suicide. You're 29 you say? You're old enough to know there's a heck of a lot more to life than video games. I can tell you, from experience, you don't need hands to live a good life.

You need a good heart.

Please see a mental health counsellor while your physical ailments are addressed.
 
You are right that at the moment doctor considers it perceived weakness. But on the other hand he has many patients every day including older and weaker ones. So he perceives weakness when it is in really mature state. Me on the other hand can compare my "old self" with my "current state". I used to walk 4km every day. Now I need to rest after few hundred meters. Docs are always waiting for very strong symptoms to be sure. But believe me, every day it is harder and harder to me to write posts because of left hand becoming more and more shaky... Doctor thinks that my changes seems to be too rapid, too fast to be true. But if you take a look at reports I mentioned it is possible. Look at

2 ALS Cases May Be Linked to Gardasil Vaccine

It is normal that docs won't tell you the worst case scenario before being 99% sure. Until I recognized this problem with left hand I had still hope that this will be some kind of Lambert-Eaton syndrome or something similar. My "perceived weakness" is already one month old. And does not disappear after taking Xanax or similar stuff. I think that most of you know that stress related are usually changing in time and reduced after stuff like Xanax. But that is not my case. But there is no point in convincing you at the moment. I will udpate status after some new medical tests.
 
PePe

I think you are clutching at straws to try and convince people you have ALS. There is one kind of true clinical weakness, and doctors examine patients of all ages all of the time; they are accustomed to the range of variations . 'Mature state' clinical weakness is nonsense; it seems a last desperate attempt to make your self-identified ALS after symptoms lasting a whole month sound plausible.

It doesn't.
 
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