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myooshka

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I am a 31 year old female. I have had clear mri, normal nerve conduction test, normal csf
I have not had the test for muscles yet. I have seen a few neruo's and tried to tell me was in my head. I now have atrophy in my hands so my family physician is sending to me to the head of neurology in calgary. I have brisk reflxes over entire body. Whatever this is it is in my hands, feet, both arms and legs, face tongue and neck. My fingers are smaller and crooked, two fingers are starting to slightly curl, my jaw has felt stiff lately and it feels as if I have to concentrate when talking because it feels like I will slur. My swallowing is wierd latelty too. My palms of hands are very flat and my feet feel wierd too. My toes almost feel tight. I get muscle spasms over most of my body. I never trip or drop things, my muscles just fatigue very fast. I know this part does not sound like als, but I get burning/false cold sensations tingling, numbness and stabbing little pains. I know this is something I have lived with it for a year I just don't know what. I have also found my eyes have burning sensation lately. Please tell me if this sounds like als or if anyone would know what this is. Thanks
 

CindyM

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Hi myooshka, Here's hoping they come up with something other than ALS. Is the clinic in Calgary an ALS clinic? You should get answers there, though not right away. There is no test for ALS so it is a long process of testing and waiting and ruling out other things. If you get anxious during this process there are a lot of folks here who can give tips on how to cope. And if you do end up with the DX, there are even more who are living with ALS and have been for years. Good luck. Cindy
 

myooshka

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Have you heard of als with burning/cold sensations, stabbing pains? No this is not an als clinic, he is the head neurologist at the university hoping this guy knows something. It was very frustrating I saw five neuro's, five family physicians and no one would believe me because I had lost both my parents shortly before I got sick. I couldn't even lift or change my baby's diapers when he was born, I got reaaly bad after delivery must of been hormones but the worst part of all was the neuro that came to see me in hospital even though I couldn't squeeze his hand or lift up my baby told me it was a mental problem not a physical problem because my mri was clean. It was so hurtful they were treating me like a nut case. They sent physio to see me the physiotherapist told me your muscle tone is not normal your hands are not normal, how could a neuro that is supposed to be the best over look this. He even made a point to ask me if my reflexes are always this brisk, but then just passed it off as anxiety. The last neuro told me the reason my muscles were gone was because of pregnancy hormone and this was the reason my hands were so flat, he said I just have hands that look like a childs and refered me to o psychiatrist who deals with people who have my problem. This guy is also supposed to be one of the best. I came home from my appointment and was talking to my neighbour who is an optomatrist, she took one look at my hands and said I'm taking you to my Dr. He saw my hands and right away referred my to head of neurology. I could write a book on this. I have had clonus, brisk reflexes have seen five neuro's and with a clean mri am told is a mental problem. My husband didn't know what to think here is his healthy, pregnant wife going down hill, who's never had mental problems yet all these trained professionals are saying it's in my head, he knows now that there are phsical things showing that something is seriously wrong. Have you heard of others that have had to put up with this? It's horrible I felt like I had no one behind me, I was almost ready to leave this beautiful world. I now have a son that is three months who has brought joy back into my life a reason to live with this illness. I'm kind of going on here, but please let me know if you have heard of als with this sensry stuff. Thanks,Mya
 

laurel

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Atrophy in hands

Hi Mya,
I am no expert as I posted about a month ago seeking some answers about why my husband's right hand and lower arm have atrophied. Since I posted, he saw a doctor at the Neuromuscular Disease Unit. She is querying whether he has Chronic Progressive Demyelinating Neuropathy. She did nerve conduction tests and EMG's on all four limbs. The first neurologist just tested the arm that was atrophying and he wound up having carpal tunnel surgery in 2005. After the surgery, he continued to lose use of the hand and it is visibly atrophied. Since seeing the neurologist at the N.D. Unit last week, he has begun to experience weakness in the other hand. We are now waiting for a lumbar puncture and a special test to pick up antibodies in the blood. The new neurologist says she will likely start him on a IV drug called IVIG. So we may have dodged the ALS bullet, but she says my husband will have to be monitored closely for any further signs of a motor neuron disease as he has some unusual symptoms that don't fit into one specific disease. It sounds like CDIF could fit some of some symptoms. Good luck.
Laurel
 

laurel

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Atrophy in hands

Hi Mya,
My last sentence had the wrong initials. It should be CIDP--for Chronic Inflammatory Demyelinating Neuropathy.
Laurel
 

janf

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hi go on to the clinic if he's head of neurology you can bet he knows als or any other neuromuscular diseases. remember many neuro diseases memic als so don't panic yet hang on and we are here for you. janf
 

myooshka

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Thanks for the support. I am so scared, my first symptom started two weeks before I got pregnant with my first child. I now have a beautiful three month old son but am so scared for my family. I know this is something very serious as my life has changed so much because of the things I can and can't do anymore. I am 31 years old I have a house cleaner, don't cook(if I did my arms would be too tired to care for my son. My husband works out of town sometimes for a month at a time. I have no family where I live so my friend helps out with errands for me, and Jacob and I get by on our own. It's hard when you can't be the mom you had always dreamed you'd be, but like my husband always tells me Jacob does not know I'm sick, only that I love him. Life is not fair, I just lost my dad at 52 and my mom at 54 last year within 10 months of each other, not that I deserve to be sick any less than anyone else. I read one post and in it a lady had written how sickness does not discriminate. It's so true too bad it didn't discriminate towards murderers and child molesters then the world would be a better place. My husband also reminds me when I am feeling sorry for my situation that there are people worse off than me. I read on the postings about a girl who became pregnant and by the time she delivered could not even use her hands, how sad. This makes me realize even though I might not be able to lft and hold my son for long periods at least I can hold him.
 

brooksea

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I've heard complaints from some PALS that their feet get burning sensations at time.

Please let us know how your appmt with the neuro goes and hope it is something treatable.
 

myooshka

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burning

I get this in my toes and hands. there is a man on msn group who has als and has numbness and tingling. Not that I want als I just know it's something serious
 

myooshka

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another symptom

my togue gets spams and it feels heavy when I talk. the edges of it are indented all the way down each side. Heard of this?
 

patricia1

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Yes thats how my tongue is. I think anyone with slurred speech and tongue athrophy should see a ALS MD Pat
 

myooshka

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so sad

It looks as I talk to people on this web site this very may be what I have, someone on here posted what his hands looked like who had als and mine look the same not quite as severe as his but the same curling fingers. I am so sad 31 years old three month old son, just lost my mom at 54 to cancer someimes makes you wonder. I guess everyone has a story, no one deserves this.
 

jojoj

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myooshka...

I would look into the demyelinating neuropathy mentioned earlier...it definitely gets worse with pregnancy, and gives you sensory symptoms. the motor symptoms are more pronounced and you can have atrophy. have you had an EMG? It should show conduction blocks or delays if that is the case...treatment exists for this. you are awfully young, and like you I am in a constant state of apprehension. This is an awful illness becauase not only does it have no treatment, you suffer like you have it even before you have a diagnosis.
 

Sammantha

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Look if you have muscle wasting in your hands then your nerves will have more pressure on them... For example, when your driving do your hands fall asleep and get tingly? when you sit and there is pressure on your feet do they get tingley? Also, i had a minor ulnar entrapment because i was always holding my head up with my arm when sitting. this caused burning and pain sensation that awoke me at night... All of the symptoms you had i had, so do not give up.. It might not be ALS but you have to fight for help believe me, i swear doctors think we like to just hand them our money and time or something........ Good luck, Sammantha
 

myooshka

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alberta
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Yes I get the tingling if I put pressure, my arms and hands fall asleep quicker than normal with pressure. Yes you sure do have to be persistant, I fought long and hard for myself. Unfortunately it is at the point with my muscle wasting and fingers curling in that no Dr. can say there is nothing wrong. I am terrified lately my memory is going. Mostly with words, how to spell the easiest word, if I'm writing not sure for example when to use to or too, their or there. It's now not a matter of if there is something wrong, it's just giving it a name. I am so terrified more for my four month old son and my husband. We are planning on selling our house which we just built two years ago to move close to his dad for help. Life was so great 30 years old,newly married, new house, beautiful son and then an illness comes and turns your world upside down. I feel so bad my husband worked so hard and just got a promotion but he works away. I am just getting by caring for my son, he will soon have to quit his job. I feel bad he has always been so proud to provide for our family and give us all we ever needed, his work is a part of who he is. He is so proud to provide a good life for our family and I feel like I am taking that away from him. My biggest fear is having to be away from my son. How do people afford to be able to say at home when they need care? We were young and thought invincible never purchased disability insurance on our mortage, although we did purchase plenty of life. I guess we thought if we did go it would be a car crash, just never imagined one of us would get sick. Even when we do move closer to family for help what help is there for people who are disabled that want to stay at home? I told my husband I could go through any disease if I was with my son, but I'd rather die than be away from him. I am just terrified in one year I have gone so downhill and (still mystery illness) need more help as time goes by. I descibed it to my husband its like you feel your old life fading everyday and you are being sucked into an illness you can do nothing about. Sorry for the rant, feels good to get it out.
 
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