Lawrence Holl
New member
- Joined
- Sep 25, 2008
- Messages
- 4
- Reason
- Learn about ALS
- Country
- US
- State
- Rhode Island
- City
- Harrisville
Well I am not sure what I am hoping for by posting. In one regard, I have been trying to avoid reading all of the posts here and try to focus simply on what the Doctor has told me but my doubting tends to bring me back to the forum and the more I read the more it seems that I think I will ultimately discover that I too have ALS. But before I get ahead of myself perhaps I should tell you my story. I am 38 year old father of two beautiful kids ages 6 and 7. My youngest is Anastasia and my oldest is Caleb. They are the light of my life, as I am sure many of you with children can understand. But, I digress. Earlier this year in the springtime I began to notice that my right hand was shrinking, or had shrunk. I had not really noticed it as it was happening. In May, I typed in my symptoms into an online symptom checker and was shocked when it returned ALS as a primary possibility as I was having the muscle twitches and the Atrophy. This scared terribly and I immediately made an appointment to see my Doctor. He took a look and asked if I had possible sustained an injury and I said that I had taken a nasty fall in the bathtub sometime during the winter and bashed my funny bone. But hadn’t thought anything of it as nothing was broken. He ordered me up a Nerve conduction test in house and I came back the following week for the test. The results were not conclusive and so sent me to a neurologist for an EMG. I was unable to get in to have the EMG until early July and went in and they performed it on my right arm. When he was done, I asked what he discovered and he said “Mild Carpel Tunnel, Nerve injury at the elbow and a neck problem” I asked him if he thought that it could be ALS as I was quite scared and he said that I would really have to talk to my doctor about it. As my wife drove me home I read the results and I thought my world was going to collapse. It mentioned the findings he had said, but reading further it said that the De-nervation present in the right hand was not consistent with an entrapment disorder and this he added that he assumes a (and I apologize if this is not 100% accurate but it’s the best I can recall) C7, C8, T1 and/or horn cell dysfunction. Recommend further testing to diagnose. Needless to say this scared the heck out of me, in fact I collapsed in thinking that what I was reading was a clear diagnoses of ALS and that I would not get to see my kids grow up. It was not helped when I spoke with my regular doctor who when I asked what it meant he said that it implied a dmylinating (sp?) disorder. I knew what that meant and asked him what it could be other than ALS and he said after a pause “well MS is in that family”. By now, I know its crazy, but I had already diagnosed myself with ALS and spent the weekend trying not to cry too much in front of the kids. I scheduled a follow up with the neurologist and began to try to keep moving forward and started to walk and pray in the mornings and began once again exploring my faith and called on family to help me. I had significant trouble getting in to see the first neurologist again so my doctor helped me find another. I scheduled the appointment and took a vacation with the Kids and both of my brother’s families to try to regain focus and peace. I finally got in to see the new Neurologist in the middle of august and when I walked in he said “Ok so it looks here like you have possibly carpel tunnel, a nerve injury at the elbow and a pinched nerve in the neck” and I thought “huh?” so I began filling him in on the details and was starting to question whether or not he had received the details of the EMG. He showed me that he had, and he began a through Neuro examination. Walk on tiptoe, checked my mouth and conge, checked with pinpricks etc etc, and then said that he did not think I had ALS. I began to get skeptical thinking perhaps he wasn’t paying close enough attention to my problem so I reiterated that I was having muscle twitching and spasms all over, even though he could not see them and that what about my hand. His response was “I have diagnose ALS a number of times and you do not present any of the symptoms that I would expect” The EMG clearly showed injury at the elbow that would explain the atrophy and the twitching was likely due to a pinched nerve in the neck. He then ordered the standard battery of tests and said come back for a follow up. This was an MRI of the Neck and elbow and bloodworm to see what is going on. So I had this and came back at the end of august. He said that the elbow did not show anything but the neck showed a lot of arthritis and a “spot”. I asked what the spot is, and he said not sure but it does not change with contrast so we just keep an eye on it. He then ordered a Lumbar Puncture and Brain MRI and had me come back. I mentioned that sometimes it was as though my thumb had fallen asleep and it was numb and twitching and on two occasions I awoke during the night and had this sensation all over my body (I am aware that these are not typically a symptom of ALS). I pressed him further this time about ALS. He said that he had “ruled it out” and when I pressed him as to how he said, first I do not present with it and second my EMG shoed normal amplitudes and a few other reasons that I cannot recall specifically. I was trying to move on and reassure myself and after talking to family and friends I decided try to take some comfort and listen to the doctor. I had the Lumbar Puncture and Brain MRI and returned again. He said “good news, you don’t have MS”, and I thought getting a diagnoses with MS wouldn’t have been bad news as I knew from my reading that as he rules things out I grow ever closer towards it being ALS. He said that the spinal fluid and Head MRI were normal. I asked again, could it be ALS and he said “I have ruled that out” and he said “look, does that mean that some day you wont get it….no but some day I could too but right now you do not have ALS: He said we have two options, he sends me on to a Neuro-Muscular specialist to further look into the injury at the elbow and to perhaps rule out a genetic type of disorder or we could wait a few month to see if more symptoms pop-up but right now it would be like shooting darts at the wall. So I said that I would like to see the specialist to see if he could look deeper. Now, I am slipping back to that dark place again, having put ALS back out of my mind, It began to creep back in. I know that I should listen to the doctor, but when I read on here so many similar stories that ended up being ALS I get scared. But at the same time, I am encouraged by your stories! I keep telling myself…well for today I don’t have it and tomorrow is another day, but it’s tough not to get sad and scared.
