Possible MS, but scared of ALS

[makedorian]

I am a 30 yo old male and I'm your question about multiple sclerosis. Sorry for my English dear Friends. For 2 years I was experiencig huge stress at work. The first symptoms started about last spring, when I often had the feeling of dead hand and it was hard for me to agitate it in the morning. Sometimes in the evening I remember it somehow hurt so I literally had to lie on it. This eventually improved. At the end of last year began symptoms that were to me mind more 'strange' - I sometimes feel as if my hands were heavy and clumsy -bit weaker. In December, I began to actively run and it has become associated with a very strange pain in left leg (below the knee) and the like tiny vibrations in the heel. Somehow in February or March this year I began so concerend about those symptoms so I visited GP. He told me that it's probably burnout, but anyway sent me to a neurologist. He did a clinical test with result of normal reflexes but sent me to an MRI of the head. In there white spots appeared, typical for multiple sclerosis. I started having panic from the fact that these symptoms could be related to ALS. I test myself all the time for 'clinical' strength, I go on the toes, I try to unscrew things and lift heavy objects. My question is whether my symptoms are consistent with the RS: clumsiness and sometimes pain in the hands, clumsiness and left leg pain, vibration (vibration as I feel it, but I'm afraid thats constant twitching/fascilulations but not visible with eye) in the whole foot and partly leg (left) THE WHOLE DAY and occasionally slight twitching in other body parts (but especially in those 'affected'). Surely my condition is affected at the moment psychologically, because of my panic, but on the other hand, hits hard to fight those feelings (I have 3 year old son). I did not have optic neuritis, just sometimes I feel slight dizziness (vertigo). Some time ago, when bending head felt a prick in the spine, but this disappeared few months ago (Lhermitte's sign?) And very sporadically slight tingling in the fingers. It seems to me that the symptoms on the left hand are now little better but at the same moment worse on the right (about a week ago - within 1 week. I know that in ALS symptoms  normally does not improve, but I'm afraid that it is not that only convinced myself to believe in). I also had three days of great pain of the neck and back (perhaps panic, but some patients with ALS indicate this), I would have the added one small question to which the answer might calm me a bit. When I was 15yo I had alcohol poisoning and since then I've had problems with the eyes (but it did not got worse in time) and problems with numbness. It is possible that the white spots on MRI were even after 15 years visible signs of Alcohol poisoning, or are those new spots and is associated with inflammation of the CNS (they look like Dawsons Fingers). I know I'm in a very unique about this, but the diagnosis of MS by me in the context of ALS really very fine for me. My neurologist did not listen to my bagging for EMG and said I certainly have no ALS (know I'm not the typical age of a of this disease is very rare).  Next week Ill undergo LP and am very scared of the result. I will be very thankful for the quick response and a bit of calming words. Marek

[Wondel]

I don't know much about Lorazepam.  I don't take very much of anything since I have one kidney.  I avoid most of everything and only take things on as needed basis.  Is your buzzing in your head??  I have buzzing (tinnutis) in my ears that at times is almost constant.  That just started a few months ago.  It never goes away and at times get sooo loud that it feels like my whole heading is buzzing/ringing.  I have "muscle spasms" twitching a lot of times... it was in my feet/legs... now it has progressed to my arm.  Drinking a cup of coffee was a task...
Fortunately for you you are getting tested for things right away.. I am with a slow and easy doctor..... one step at a time.  Im not sure I will agree to a LP.  
So glad to hear that you do not have ALS... and let your anxieties go away... I know there are a lot of things we are going to have to experience with this... as I am in the process of being diagnosised too...l I have MS/White matter disease. of the head.. with another MRI of my C-spine in two weeks and already leisons on my T-spine.  

[makedorian]

Thanks a lot!!! It was so nice to read I have soulmate out there! :) I will have spine MRI, LP, EP next week and doctor also suggested Yesterday that is seems like early MS and I definitelly do not have ALS. What is scaring me most is this strange buzzing/internal twitching. This night I was not able to sleep due to that, it was like my head will buzz off. It became much worse for me after I started to take Lorazepam for my anxiety. Does anyone have experience with with such medication in relation to MS?

[Wondel]

Hello. I am new to the site but I understand completly how you feel.  My uncle passed away a few years ago from ALS and when my symptoms started happening, I was convinced that I also had that terrible disease, Every experience I had, i.e. numbess, tingling, pain, it occurred mostly in one leg.  I had broken that foot and was attributing it to the broken bone not being healed, until a year later.  Then one year, then two and the symptoms progressed and I began to piece them together, like eye pain/blurry... occassionally arm numbness/pain. then my back and my neck.  Doctors suggested, but never tested for MS and myostenia gravis, but I was still worried about ALS.  A lot of the symptoms were the same.  Finally, after some testing, all points to MS, and am in the process of being diagnosised.  The MRI of the brain are pointing that way, changes in the brain indicated MS along with leisons on my spine.  Calm down, and be positive.  I am more satisfied with the prognosis of MS as opposed to ALS which was my fear also.  My wife worried more about that than me, since I really didn't understand.  I only knew it was fatal which I have children also at home.  I was very very active until all this started happening to me.  Now, after facing MS vs. ALS, I am quiet content on having periods of down time, and having to change ADL's as opposed to death.  So ride it out and have faith that you doctor knows what he';s doing.  I did and now am breathing a little easier.  If you ever need to vent, feel free because I am truely truely understanding of your fears and anxieties because they were mine also.  

[kwarendorf]

Among other things you should not do is practice radiology. You can't. Doctors spend years learning how to read varous imaging studies. You are not qualified to read even your on MRI's.

As otyhers have counseled here. Take a deep breath and try and calm down. If you do not trust this neurologist, see another.

Kyle

[Artanis12]

I can't reply at length, (I'm at work) but since my mother had ALS, I do know a bit about it.  What you are describing is NOT how ALS presents.

As others have said, be calm and believe your neurologist that what you are experiencing is not ALS.  That is a worry you need to just drop, OK?

Karen

[makedorian]

Thanks VERY VERY much for Your reply!!!

In report was written diagnosis 'Inflammatory CNS disease' and proposed LP based on MRI results. He did not use term DF, but from what I saw online, those look quite like mine (vertical white spots). I would love to load the picture up, that You may comment, but dont know how to do that :(

He did reflex test and if I go straigth etc. and said all was normal.

Yes, I really try to calm down, but I simply cant cope with that. I see now world from different perspective, which is good (all colors are brighter, if You know what I mean:), but anxiety is devastating:(

What is biggest concern for me is real muscle pain I have (sometimes neck, calf, arm) and buzzing leg :(

Marek

[essdipity]

Hi there, Marek. If you are seeing a good neurologist, you should have confidence in what he or she is saying, and not worry about ALS or other diseases.

Your MRI report shows lesions consistent with MS. Did the report use the term 'Dawson's fingers' or is that your own interpretation? Dawson's fingers make MS much more likely, since this shape and position is very typical of MS.

Also very important is the examination, head to toe, that your neurologist probably has performed on you. What were the results of that?

Do whatever you can to calm your panic and anxiety. It's not helping, is it? Why borrow trouble, when it's likely you do not have any fatal illness? If it's MS, there are ways of coping. Not always fun or easy, but certainly manageable. A great many people on this forum are managing every day.

So I'm suggesting you see a therapist to help you learn to deal with this, and with whatever else life brings you. Also, of course, keep seeing your doctor who is doing everything possible to arrive at the right diagnosis.

When you write again, please use small paragraphs, as I'm doing. Many people with MS have trouble with big blocks of text, and cannot read them very well. Thanks.

ess