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Lawrence Holl

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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.
 

BethU

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Hi, Lawrence (Larry?),

This does not sound to me like ALS. I am not a doctor, and have no medical training ... but since your neurologist says he has ruled out ALS, I can think of no reason on earth for you to doubt him.

You wrote:
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.

This is not correct. Ruling out MS does not put you closer to ALS. If you do not have signs of ALS, then you do not have signs of ALS, period. It doesn't matter what else you don't have. You have received double good news: You don't have ALS and you don't have MS !

By the way ... it is hard to read your message because it is all one long piece of text. Next time, break it up into paragraphs, and it will be easier to follow, and you'll probably get more responses!

Good luck! Trust your doctors. Sounds like they are really being thorough.
BethU
 
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Lawrence Holl

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Learn about ALS
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Rhode Island
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Thank you

Sorry for the long post, i will definatly take your advice on both accounts. Even more, thank you so very much for your encouragement. You know, I know it may sound crazy but hearign from someone who knows a bit about it first hand is acutally very reassuring. I had been afraid to post, becasue I know what it sounds like that I question the Doctor, but I guess I truly wanted to discuss it in a place where other folks were going through similar things. Mostly because after reading everyones posts I really do get tips, about how to deal with it all and they really help!

Thanks again, I so much apprecaite your thoughts...And i promise no more long posts :D
 

crystalkk

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Hi Lawerence,

Sorry you have to be here, you are doing the right thing by going to the nueromuscular specialist.
It is hard not to get sad and scared, I keep telling myself I am going to keep busy and stay off of the computer, but it doesn't work.

Do you have the the report of the neck mri? Does it say exactly where "the spot" is or what "the spot" is? Is it on the spinal cord itself? MS can show spots on the spine, it doesn't have to be on your brain.

If you don't have a copy of your films, I would get them and bring to nueromuscular specialist, he will probably want to look at them if he reads films.

Do you have any weakness in your hand or arm?

Hang in there,
 

Lawrence Holl

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Thanks I till see if i can get a copy

Not sure where the spot is, I will see If I can find out. I had initally thought that if the Spinal Fluid was normal that It was not involved. No weakness in my arm at all, or anyhwhere else for that matter. WIth my hand, strangely its still failry stong..jsut clearly atrophied. Most of the wasting appears on the thumb side. I sometimes wonder if my emotional state has caused the twithing elsewhere, but most sure feel the same as the fascilations I get in the hand but the ones in my legs and feet sometimes feel more liek a cellphone buzzing in my pocket and the ones in my left bicep are more like spasms that make the msucle bounce. The other odd thing is that they seem to come and go randomly all over and some days have have little to no twitcing.

Thanks again for the input
 

crystalkk

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Lawrence,

You should be able to get a copy of the MRI report and films where you had the studies done.
 

laurel

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Hi Lawrence. I have briefly read what you wrote, and will look later in detail as it is hard to absorb quickly without paragraphs. Just a quick comment, my husband had similar symptoms with atrophy of the right hand. He is now diagnosed with CIDP-MADSAM variant. Has that diagnosis been considered for you? I will read your post in detail later and perhaps comment later. All the best.
Laurel
 

awieleba

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Hi

I am sorry to hear about your symptoms, it does seem like you are getting tests. It can all be sooo confusing, frustrating and scary. I have been through alot with no diagnosed. and having young kids, I have-7,4, and 10 months that makes it much more scary. It is nice that you can come and here and post or vent. I TRY not to talk to my family too much anymore. I dont want to be known as the girl/sister/etc that is always talking about being sick or comparing hands! IT is nice to have a place to go and the people understand. I wish you luck and strength and hug and cuddle with them kids! My kids are what get my butt in gear and smile and enjoy the day, oh and my husband too! I dont want to leave him out.

take care

april
 

Zaphoon

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Aug 2, 2008
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08/2011
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Springfield
Lawrence,

I don't understand your mindset. If the neuro told you he ruled out ALS, you should too!
Good Lord man, you don't want ALS unless you're some kind of sympathy seeking nut case! Quit trying to convince yourself you have ALS and you will sleep better.

Listen to those who know their stuff - the neuros!

Zaphoon
 
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rose

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Mar 29, 2008
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Lawrence, I am puzzled. To paraphrase your last sentence, you said you wanted to believe your specialists, but so many of the posts you had read on here scared you because they started out similar to you, and they ended up having ALS. I have not read any of these posts, or know who the people are that you are referring to.

It was difficult to stay focused to read through all of your post with close attention, but one thing that jumped out at me is that one doctor said you might have a demyelinating disorder. ALS is NOT a demyelinating disorder. The mild carpal tunnel indications would explain changes you noticed with your hand.

There is so much you're going to miss out on in life if you let yourself become fixated with a condition that you don't have. Your kids are going to be grown in a blink of an eye. Focus on your family!

Everyone gets things wrong with them, that's part of life. most of us get arthritis ~ we get gall stones, or kidney stones or high blood pressure, things hurt, we lose our hair, or our waistlines. Its just how it is.

Turn off the computer. Really.

Good luck tomorrow, and please be receptive to what the doctor tells you. :)
 
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