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  • Do I have ALS PLEASE HELP! Opinions please

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    Old 10-03-2009, 09:58 PM   #1
    Junior Member
    Join Date: May 2002
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    Axa HB User
    Do I have ALS PLEASE HELP! Opinions please

    I have posted this also in the MS forum as the symptoms I am feeling are so similar. I looking for some advice please...

    Ok here goes...

    I have had various health issues over the past 18 months, light headedness, gastro intestinal problems, throat issues.

    I had an MRI done 2 years ago due to light headedness – Result was all clear.

    I then felt light headed again 15 months later and then 6 months ago I had a Brain CT scan followed by a Brain MRI all again turned out clear. I had read about MS and asked my Neurologist if I have MS and he said in 95% of MRI’s MS shows if your symptomatic and I was possibly showing some symptoms. After the MRI he was happy it was not MS. I also had a huge range of blood tests CBC,s Immunity tests etc. all of which were clear. He ordered a MRI of my Cervical spine and that showed a bulging disc at C4/5 the report says:

    Bony alignment and marrow signal are normal C4/5 and C5/6 disc spaces are narrowed.
    Broad based disc protrusion is seen alog posterior ad left posterolateral margin of C4/5 disc. Left C4/5 neural foramen appears severely narrowed. Suggest correlation with symptoms and clinical findings. Central canal only shows mild narrowing. right C4/5 neural foramen is midly narrowed.
    Medial end of right C56 neural foramen is mildly narrowed. Small annular tear seen at posterior margin C5/6 disc.
    Small central disc protrusion noted at C6/7 disc

    The concerning thing was the small finger is not affected by C4/5 issues

    A month later I kept waking in the night with the left side of my hand feeling totally numb. As the weeks progressed this got worse, then went away for a few weeks then returned again with intensity. The feeling then started creeping up my arms and then across to my right hand and arm. I started getting tingling and prickly feelings in my fingers and arms. When I would go to bed I also started to get tingling in my feet. I also started to get a feeling of a lump in my throat but no lump was seen or detected by an ENT Dr. he put it down to a phenomenon called “Neuralgia”

    I had yet another disruption of the bowlels with pain and constipation and so I went back to an Ortho Dr and Neurologist. Because this numbness seemed episodal my Neuro got concerned and said this was all pointing to MS and so ordered more tests again which were:

    1) Brainstem evoked Potential
    2) Visual evoked potential
    3) Somatosensory evoked potential
    5) Brain MRI with and without Contrast
    6) Cervical Spinal Cord MRI with and without Contrast
    7) NCT
    8) EMG

    Again they all came back normal but the NCT and EMG showed some nerve entrapment and the Neuros report on the NCT/EMG said the following:

    Prolonged distal motor latencies of left median and left ulnar nerves may suggest proximal root lesions. Mixed nerve study shows that the latency of median nerve is prolonged compared to that of ulnar nerve. This suggests slowing of conduction over the wrist. Therefore, it provides electrophysiological evidence of left sided carpal tunnel syndrome.

    He says the chances of Carpal are about 50% but I dont think it is as I have my arms and legs affected!

    The Neurologist again had a meeting with the Senior Radiologist and they both came back and said this is NOT MS as if I was this symptomatic with MS it would be very distinctive on the MRI images and that my Brain and Cervical Spine MRI showed ZERO evidence of any MS, additionally the fact that the Brain Stem tests are normal corroborates the diagnosis – I was told the brain Stem tests are pretty conclusive.

    1 week on and my right leg is weakening – it feels like I have exercised my calf muscle and has that weak feeling that you get after you have worked it in the gym. All my muscles feel twitchy and sometimes certain muscles are slightly trembly. Sometimes if I sit on the sofa my right leg feels like it is going to sleep. I am terrified as to what the hell is going on with my body. I am suffering severe feelings of nausea.

    I wonder if anyone could give me any thoughts about this please – I am in quite a state as I fear this is MS or ALS



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    Old 10-06-2009, 08:46 AM   #2
    Join Date: Jun 2003
    Location: chico, ca, usa
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    anxiousme HB Useranxiousme HB Useranxiousme HB User
    Re: Do I have ALS PLEASE HELP! Opinions please

    First, I'm not a doctor and only doctors have the knowledge and test results in front of them. What I did want to sounds like you have a great team of doctors that are running all the appropriate tests. It also sounds like they are validating your concerns and not just telling you "your stressed", etc.

    My mother was dx with ALS this year. I was dx with MS in 06'. MS can take time to show up on MRI's. Keep repeating them every 6 months. My initial impression reading your post is that your problems may infact be from your cervical spine findings. Maybe correcting your cervical issues will help your symptoms. Again, I don't want to speculate on what you may or may not have. I just wanted to let you know to continue to search for answers. Your doctors seem vested in finding your diagnosis. Good Luck and keep us posted on this board and the MS one, too.

    Old 10-15-2009, 03:32 AM   #3
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    Axa HB User
    Re: Do I have ALS PLEASE HELP! Opinions please

    Hi people PLEASE help me and pray for me.

    Since I made this post my right leg has got worse and feels real weird and its not weak but feels like I am standing on a nerve. When I sit my foot makes me move it not because of pain but like its all sensitive and I am on a nerve. I am also getting a lot of twitches in my right leg. I ma having twitches on other parts of my body but my right leg seems to be getting the most.

    I keep jumping off chairs etc to see if its weak but its not. My reflexes on the knee are normal but I am SOOO scared this is driving me crazy. I am CONVINCED I have ALS. I have 2 beautiful daughters who are toddlers and I think of how life will be for them if I have ALS.

    I have also got this weird habit of where I yawn every 10 mins. not because I am tired but its just a yawn. When I yawn I get a feeling of extreme nausea with it that lasts for a few seconds then dissipates?? I read excess yawning can be a central nervous disorder - Oh my GOD this is what ALS is. I am so scared and Its making me cry like a baby.

    I am sitting here typing at the table and while I am I can feel my legs twitching. I also feel like my arms are feeling the same kinda nerve weakness as my right leg and my eyelid is twitching very often. This has all happened in the past 2 weeks. My hands are fine and I can type etc and so far I am having no problems with them or walking as I feel fine. My leg just feels weird and kinda weak but more of a kind of nerve pain.

    Please give me some advice people I am going out of my head. I am 40 which is the age ALS can start too.

    Last edited by Axa; 10-15-2009 at 03:34 AM.

    Old 10-15-2009, 10:14 AM   #4
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    Location: Port Deposit, MD, US
    Posts: 117
    tinabean34 HB User
    Re: Do I have ALS PLEASE HELP! Opinions please

    I don't know what to say but I wanted you to know that you are not alone, I have very similar symptoms as you and I don't know what it is, all my tests have come back clear, my last MRI showed lesions but they chalked it up to migraines. I have been told by two nuero's they think I could have MS but when I went to the specialist he said he didn't think so since I had a brain tumor(since removed). It's been five years and things are proggresivley getting worse, my hands and arms just started giving out on me, my legs have been in pain for quite a while and I am losing feeling in them more and more as time goes by, I can't feel one leg on another anymore and you know how when you don't shave your legs for a while you can feel the stubble on the other leg and it's scratchy I no longer feel that. I can tell that they are cold but when I put one foot on the other can't feel the coldness. They go numb all the time, there is twitching even in my eyes. I wish you the best on figuring this out. I just wanted you to know I know how frustrating and scary this can be. I don't understand why for some of us it takes so long to get the diagnosis that we need to move on with our lives. My friends have accused me of wanting to have some horrible disease. I don't want that, I want none of this, I want to be better! If not then I want some answers for why my body is failing me. I need that knowledge. I have two kids. I will not give up my quest and niether should you. Good luck. I will say a prayer for you to find the answers you need.

    Old 06-14-2010, 08:16 AM   #5
    Join Date: Jun 2010
    Posts: 1
    DrMadup HB User
    Re: Do I have ALS PLEASE HELP! Opinions please

    How are you doing now, Axa? I found this forum by Google search because I too fear slightly that I may have ALS induced by the H1N1 vaccine that I received 5 months ago.
    Before all of these symptoms of yours began, did you by chance get any vaccines?
    It has taken me months of searching and researching and I finally realized that my numbness, weakness, tingling, dizziness etc was due to my receiving the H1N1 vaccine. The numbness started in my legs the night after I received the vaccine. From there, I had horrible gastrointestinal issues, stage 2 hypertension, and so many many more problems that I can't begin to list them all.
    I was always a healthy person all my life until I got this vaccine. This the my 1st vaccine since I was a child getting the usual vaccinations. I am now 34 and should not be living life the way this vaccine has made me.
    I worry about ALS now because the muscle weakness, cramping, twitching and random pains are getting more extreme. Since the vaccine causes peripheral neuropathy, I fear that my damaged nerves, or whatever is going on in my brain due to the poisons of the vaccine will now cause me to develop ALS which I feel is the most frightening disease any human being could get.
    Please let write back and let us know how you are doing now, Axa. Or anyone else that may info on the adverse affects of H1N1 vaccine and what additional damage it can cause.

    Old 09-01-2010, 08:31 PM   #6
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    Join Date: Sep 2010
    Location: kyle tx us
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    martinez27 HB User
    Re: Do I have ALS PLEASE HELP! Opinions please

    My mom has ALS and ur symptoms do not sound like it.. She started with her foot stiff. and her legs weak and the she started to fall alot not she in a wheel chair and can not walk or even lift herself from the bed.. I HOPE THIS HELPS...

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