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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Hello, I am new to this message board and am desparately looking for any hope I can cling on to at this point. Up until my problems started I never had a single health problem yet I'm only 34. Anyway, it all started when I had an upper respiratory infection back in April '04. I developed a cough that wouldn't go away and went to my doctor when I noticed I had painful and swollen lymph nodes under my chin and arms. He had me get x-rays and was sent to a pulmonologist who gave me a preliminary dx of sarcoidosis which is primarily a disease of the lungs. The day after I saw the pulmonologist on June 2 '04 all my symptoms for sarcoid kicked in. I had shortness of breath, I felt feverish but had no actual temperature, had painfully sore lungs and a slight weakness in my left arm, which I thought was from the sarcoid. Over the the next week and a half the weakness got slightly worse until I had my mediastinoscopy for the biopsy on June 15 when after the surgery the weakness seemed to have been magnified 10-fold. It then traveled from my left arm and upper body and through my right arm. I went to the emergency room and stayed at the hospital for 3 days and on the second day the weakness traveled down through my legs. On the last day all of the weakness completely left my body in the order in which it first appeared! But two days later it returned in my left arm again. Since then it spread to my right arm but not as weak as the other and has stayed this way since. If ALS involves the death of motor neurons how could I have recovered so quickly??? Also, could having surgery have anything to do with making the weakness worse in ALS? I also have slight numbness over most of my body esp above the neck and below both knees. Sarcoid is only affecting my lungs at this point so the numbness can't be an issue unless it's neurosarcoid which is extremely rare and they didn't find it on my ct scan. Is there numbness involved at all in ALS?? The weakness is accompanied by pain sometimes when I move my arms or go to lift things. But I would think that is normal if I'm so weak to begin with. I also have a weak voice which I thought was from sob or the surgery but haven't had this until a few weeks ago. I have had an emg and an MRI of my brain w/wo contrast and of the cervical spine but nothing was found except for this bilateral peroneal motor neuropathy of uncertain significance, excerpted from my emg results. Does this mean they found weakness or numbness? My neurologist says he found no muscle wasting but whenever I feel my arms they feel withered especially when I rub them. They feel much softer than they used to as well. Could this be muscle wasting in the beginning stages?? My neurologist wouldn't answer my questions. He has me seeing another one in Phila******a because he couldn't help me at all. But this isn't for another month and I need answers now. I am really losing my mind over this.

Here is something else that is wierd, I get a humming in my ears esp when I have a fan or something running in the background. There seems to be something going on inside my ears that gos in unison with the other humming sounds or it may just amplify the sound. Is this also a part of ALS? I have stumped every one of my doctors and will probably have to go to the Mayo Clinic to get answers. I am not sure if the numbness is a part of the ALS symptoms because I had numbness going back to over a decade ago starting in my feet and spreading up to my knees, it stayed that way until I had the sarcoid dx'd, then a few weeks later I had numbness all over my body, but it's not as bad as in my lower legs and feet. I noticed a strange withered feeling in my upper legs which is also how my arms feel but I have no leg weakness at all. Is it possible to have wasting without the weakness? If it isn't then this can't be wasting but perhaps a neuropathy caused by something else? Any answers would be greatly appreciated. Thank you.





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