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aburto26

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Hello everyone,
about 4 years ago I woke up and my left hand was odd feeling..just wouldn't function right. I didn't think anything of it as there was no pain at all. About 2 years passed and I noticed that it was progressing to be much worse and when I would bend my thumb it would shake uncontrollably. In January of 2013 I had a dr. Appointment as I was 3 months pregnant and I asked my Dr about it. He looked at my hand and pointed out how atrophied my hand was. I didn't even notice how bad it was till he examined and did a few tests with me. He referred me to go get an emg done. After my emg the Dr scratched his head aND really had no clue what was going on. He thought I was having carpel tunnel but clearly it's not. He then referred me to another neurologist who examined me and said he too had no clue what was going on. Since I was pregnant I waited about 6 months to go get an MrI done. The findings of the Mr I showed I had arthritis of my neck and nothing else. I was then referred to a neurologist at the University who specializes in more. He conducted another mri, emg, strength test, examination. I was told I had a slight case if spina bifida. He suspected I had mmn and was put on ivig trestment for 4 months. After the completion there was no change in my strength in my left hand which is getting to be worthless. He then ordered another mri to see if it could me mma. And if I had a spacing in my neck it was that. We'll I have no spacing in my neck but he still diagnosed me with mma..this was in july. I've tried to research as much as I can about mma but there really is nothing about it . I don't feel I have it as I am a 28 year old healthy fit female, I just feel he was out of options. I am at a loss of what to do. My hand is severely atrophied, my strength is crap especially now that it's getting cold. I have a 1 year old a d am scared to death I have als. I can live with a demented hand but I feel it's spreading to my feet, legs. Etc, but then I think I'm going crazy and it's all in my head. I can play the piano still which gives me hope its not but thats after practicing how to use my left hand and I play soccer stI'll once a week.

My husband thinks I'm crazy and gets mad if I even bring up the possibility of als bc he says if I had it the Dr would see it. My grandpa died of als about 10 years ago , I was told he contracted it from ww2, but after talking to my mom I asked how certain she is of that and she wasn't. Also about 10 years ago i had blood work done and tested positive for hepc, but a few months after every test since then has been negative..could this be something related? Ive kinda been sickly my whole life and maybe it's all related who knows?!? Well any who i made an appointment with the mayo clinic in December and a follow up with my neuro which is in a few weeks. Anyone have anything similar like this going on? I stay up each nighg and read and read about als, mmn, ms, anything and I'm going to lose my mind! Sorry for the long post .
 
Aburto, you're right to be concerned, but wrong to stay up each night reading about ALS.

First, ALS is really rare, so your doctors are wise to look for more common diseases.

ALS doesn't strike in all four limbs at once. It typically works up from one foot, to the leg, then the other foot, to the leg, and then the hands and arms and onward up the body. In even more rare cases, I can start in the tongue and hands. Then after the head and neck have been paralyzed, it works downward toward the legs. It doesn't sound like you have ALS.

Second, the weakness you describe in your hand is really slow moving. If you can still play piano, at all, I doubt that your hand is paralyzed. In ALS, the key feature is paralysis, that is, limp and useless.

You're heading to the right place. The Mayo Clinic, I'm sure, will give you the final diagnosis and start you on the path to recovery. Try to stop reading about it. Stop worrying about it. You're going to get better in December.

Third, in the very rare instance that this could be a highly unusual, slow moving presentation of ALS, what could you do about it? There is no cure, and it's always fatal. It is, truly, what it is. Worrying and reading won't help at this stage. If, in the rare chance that you have this rare disease (I doubt you do) come back and we'll show you have to live your life to the fullest with it.

You need just one thing: First and foremost, you need your life back so you can relax and focus on the love and wonderful experience of raising your child. For this I suggest stop reading and stop diagnosing yourself. It will all work out in December whether you live nervously or you enjoy living.

Enjoy your child.
 
What Atsugi said.

and

Get the best possible advice from the best possible docs. On the off chance you are in our club, you'll find your anxiety actually vanishes as if by magic. I empathize that your anxiety is in not knowing so perhaps the immediate task is finding out. It makes all the difference.
 
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