is ALS starting?

[lost]

Hello all I'm 27 male, I'm still not diagnose but I have some very frightened symptoms and I want to hear your oppinions.

In March of 2007 after very stressful situation I started a lot of symptoms:
-Fasciculations all over my body(very strong I can see my body parts twitching)

-muscle pain/stiffness in the both calfs
-tinging on my toes for 10-15 min. suddenly
-eye twitching (I have it still on my left eyelid)
-sore tongue and tingling(I've lost my taste for 1-2 weeks)
-upper back pain
-buzzing sensations above my knees and in my toes when I bow down my chin to my chests
-stiffness in my right thigh (it appears and disappears with no phisical reason )
-bllured vision and light sensitive eyes, also I had a pain when moove my eyes
-also I have sometimes pains in all of my muscles which comes and goes with no reason
-my fingers started to hurt and stiffness when I start writing also I fell my hands swollen also toes.
-tingling on my fore head(1-2 weeks and stoped)
September 2007 I got left arm weakness but not hand. It went I couldn't tie my shoes or cut a bread but if I catch someone I can break his hand. I had this weakness 2-3 months and I went to a EMG for the hand and the right leg(which I have stiffness) I do not know how but it was normal for both ???
Also I took MRI it was normal again. My neurologist said that its not ALS and MS, but It could be Fibromyalgia. Then I stopped all doc visiting I fed up
I left with almost the same symptoms but:
-my right thigh stop hurt and stiffness only a little but the pain is too small.
-I took needles/pins all over my body
-buzzing sensations in my hands and shoulders and foots/legs
-When I scratch my arm close to my bunch its like I'm touching my nerves for both hands I was wondering where it cames from?
From 07.2008 this left arm weakness started again I started to feel first that "my arm is not mine I have coordination power but I felt my arm strange like its weightless). And then a pain started to all my shoulder and shoulder blade. Again the same situation like last year???


Now 1 month ago no change not better and not worst.
I do not know do I have to go again to EMG?
Could ALS start from my left hand then stop with no changes on EMG and to start again 9 months latter now?
Also I had a stiffness and pain in my right thigt but no I do not?
Is it possible to have Fibromyalgia and ALS both like Fibro and MS?

What do you thing about all of this freaky symptoms is it ALS?

[rose]

It doesn't sound like ALS, but maybe could be the Fibromyalgia. Has the possiblility of Myasthenia Gravis been explored? If not specifically these autoimmune conditions, there are others that could be responsible, or Lyme. Were you tested for Lyme disease? Or a virus that is refusing to leave your body and perhaps has infiltrated your nervous system. Have you ever had shingles? Have you seen a rheumatologist? Also perhaps a neurologist who's specialty is the autoimmune crossovers such as the myasthenia. Tingling is not a symptom of ALS, nor is there usually any eye involvement, twitching, blurred vision, or otherwise. Neither is taste affected, but that doesn't sound like it lasted that long for you. Honestly, I would put ALS and it's relatives far away from your mind, but you should get to a doctor that would run other type diagnostic tests than the muscle function type. What you have is most likely treatable, and the sooner you are on the road to diagnosis, the sooner that can happen. Good luck to you!

[awieleba]

Hi,

It does not really sound like als. It sounds like you have nerve issue to me. It does sound ALOT like MS to me. I know they tested you for it, but that neck to chest with the shocking/buzzing is s classic MS sign. I forgot the name of it. It does sound like you have a lot of sensory issue's wich do not normally go with als. MS effects your eyes also. And so does MG.
Have you had a ncv? I would ask "wright", he knows alot about neuropthy. Have you had a spinal tap? It does not sound like fibro. You have so much tingling and buzzing, it sounds like your nerves.

I wish you the best of luck!

april

[BethU]

QUOTE=lost;51922 My neurologist said that its not ALS and MS, but It could be Fibromyalgia. Then I stopped all doc visiting I fed up.[/QUOTE]

Hi ... Your symptoms could be a lot of things, but from the little I know, it sounds like fibromyalgia is a possibility. Of course, none of us are doctors and cannot diagnose anyone online. Why do you think it's NOT fibromyalgia? Why did you stop seeing a doctor?

I'm really sorry you are going through this difficult time ... those are very distressing symptoms ... but it sounds like your doctor was working hard to diagnose you, and may have been on the right track. From my little experience, your condition does not sound like ALS. Doctors usually have to eliminate a whole lot of diseases before they can say for certain (or almost certain ), "This is what you've got."

If I were you, I'd get back to that doctor and let him continue his evaluation. Once he is able to pinpoint what's wrong, he can begin to treat you.

Good luck!
BethU

[planningguy]

With the caveat that I am not a medical professional, it does sound a lot more like some type of neuropathy. The clean MRI would point away from MS (but I'm assuming more than one, contrast, and both the brain and cord).

Others have thrown out some good alternative possibilites, and let me add one more. Have you been tested for vitamin deficiency, especially vitamin B-12. It's something that's overlooked more often than you would believe, and left unchecked for too long can cause serious neuropathy (particularly if your body produces the anti-body that sets you up for pernicious anemia). We recently had a wonderful outcome story on this forum who made it all the way to the Mayo where they found it.

Do follow up with your doctor, or get a second opinion if your frustrated with the usual suspects. Here's hoping that a one dollar shot, some anti-biotics, or even good old R&R sets you right.

Good luck

Robert

[lost]

Hi Dear BethU, I beleived that its Fibro but as I wrote I started to feel pain in the shoulder blade and shoulder also a little weakness in my left arm just like last year. Last year I couldn't tie my shoes I didn't have power by EMG was ok ? I can not imagine how its possible because the EMG doc. was perfect for our conditions in Bulgaria I mean the equipment was new etc.... Also EMG of my right leg was normal....

I' m scared for ALS again because I think now that I have onset form my left hand.

From other side is it possible to have onset last year in my left arm and to have a normal EMG ? Also the weakness got better for 8-9 months(no weakness) and then to start now again 1 year ago exactly the same development?

[laurel]

When my husband started his saga of getting diagnosed--in the end he was diagnosed with CIDP--he had clean EMG x 2 over a couple year period. Then diagnosed with Carpal Tunnel, had surgery, had more nerve conduction studies, eventually referred to a neuromuscular disease unit and had all tests repeated and was diagnosed with CIDP and is now treated with IVIG monthly. The first neurologist doing the testing tested only one limb and concluded Carpal Tunnel 2 years after he did the first testing. The neuromuscular disease unit neurologist tested all 4 limbs and found evidence for CIDP. The tech doing the testing asked my husband a number of questions about his previous nerve conduction studies and shook her head about the omissions made during his previous testing. I would suggest getting a referral to a neuromuscular disease unit neurologist. Don't wait as my husband did and wind up with permanent atrophy if you might have something quite treatable. The autoimmune diseases can go into remission and flare up repeatedly--so I am thinking you have something autoimmune in origin.
Laurel

[awieleba]

I really dont think als comes and goes. It COULD be fibro but I was in the rheumy's office yesturday and he said that I have 10 of 18 points but I did not feel the intense pain that comes with it. Maybe facial myo-something. I did have a really bad pain im collerbone area and shoulder a few months ago. and my collerbone area is still sore (that is one of fibro area's). I have sore areas every where he touched but it was not that bad, and I do have a threshold for pain and aches. So who knows.

Maybe you should get 2 opinion on the MS? I was told 13 yrs ago I had it due to lesions on my brain, them got a spinal tab and had no bands. Then went to a specialist who told me that I dont and that my lesions were normal. MY point is that you dont have to have lesions per se to have ms. YOu can have lesions on spinal cord, did they do Mri on your spine and a tap? again what about the nvc? ncv shows nerve damage.

I wish luck,

april

[BethU]

Hi, again ... Robert, April and Laurel made some excellent points. There are SO many possibilities, and the only way you can narrow it down is by going through a lot of tests. I know how tired of the testing process you must be ... we're all the same boat ... but since you are noticing new symptoms, it's even more important to let your doctor know what is happening.

Good luck! Hope you get a diagnosis soon!
BethU

[lost]

Also I have tremors time to time in both arms/hands, lips.

[lost]

Sorry for my silly questions but...
Is it possible if I have first feet stiffness very bad pain in my right thigh-then cure on 100% then to switch to my shoulder or upper arm last year, to cure 100% for 8-9 months(negative EMG).Then to start again now onset in the same left upper arm/shoulder shoulder bladle...? Its very strange to feel now my left arm like its not mine I have coordination strenght(not alot because my shoulder and upper arm start to hurt if I do more physical) but I feel it weightless time to time?

[CindyM]

Again, none of us are doctors here and it is impossible to dx somebody sight unseen anyway. But none of the things you describe sound like ALS. JMO, Cindy

[Zaphoon]

Only your doctor will be able to tell you for sure whats going on with you. Be prepared for lots of poking, prodding and blood letting. Until then, relax and enjoy life.

[lost]

Is ALS spread the weaknes if its limb onset like this: Starts from hands not from upper arms and from feets but not from calfs or thights? Also could it affect firstly the left arm and leg and then right or there is no rule. Because I have stiffness and pain in my right tight and calf but weakness in the left leg and I almost stoped the twitching it was really bad past 16-17 months.
Also I had pain in my back and spinal cord but I 'm waiting to visit the doc.

[lost]

Anyone with joints popping, could it be a symptom of ALS ?