I'm trying so hard
fHello Everyone,
I guess in the beginning I should have introduced myself in a more proper manner. My name is Robin , I am 48 years old and I am married by a thread and have 5 beautiful children. I have not been diagonised but AI hope you all dont mind me being here in my frantic state. I am desparate for answers and you all have given me more info than any dr who just blows my symptoms off to stress and nothing wrong when I know this is not true something is wrong i just dont know what yet...so i am tring to find the answers i need please bear with me.
I originally had an onset of neck and arm pain in June. The pain was so bad there was no drug that could touch it. Shortly after that I began to see my with in weeks my arm from lack of use began to wast away At first I thought it was due to some sort of cervical injury,My son had walked on my back and the next day i could not move. my arm ached for months. The pain went away after several weeks but the atrophy in my hand continued. It did not prevent me from going to the gym even though it ached off and on I pursued determined to regaindn the strenght I had lost I regained a small amount but it was not normal my energy level was great. However I could not use my arm the way i used to it had become unusable. Mainly my left hand. I compensated for it buy using shoulder muscles to lift weights and try to build the muscle back up. My hand begin to atrophy, slowly now it is to the point where if you look at it from the palm angle there is no muscle originally thenar area between the thumb and the index finger all dexterity is gone. These new onsets began about three weeks ago. I had a sudden onset of severe fatigue, and a slight twing of pain in the bone in the ulna not being able to go to the gym where previously I was going daily doing strenuous exercise. Now I can barely make it aup a flight of stairs.I went to the gym just to see iff i could do a cycling class and noticed that I was sweating and that my legs became very wabbley Recently I have had twitching on the side of the arm that is atrophy. I began to notice that my jaw was d and hard to formulate words, even to the point of slurring. I also notice that my tounge when i stick it out slightly jump around and flutters uncontroablly I stutter sometimes uncontrollably. And find it difficult to begin a word sentence. Its there I just cant spit it out and sometimes it s there and then its not.My walk is still okay except that it feels like i have to pick up the foot from the knee and plop it down .
My heart and breathing have become more labored and it seems as if my body is achy. I have noticed some stomace pains in the upper part of my tummy above the naval. A crampy feeling not so to having to go potty that is not a problem. Sore joints at the knees too. I feel like I want to cry all the time.
My reflexes are good in both the legs and arms my spine feels stiff too. Not alot of atrophy in the rest of my arm at least not alot to anyone else but me but definitely;y in the palm, If I look at the palm it is as if there is a cave in the center. My arm burns pins and needles and is unable to function or grasp things normally. I do not have bad pain but sometimes it just feels like a generalized body acke. I had a twitch so bad not pain ful bad but came on so strong that it alarmed me. That's another thing I am far more sensitive to loud noises and I jar to sudden or loud noices.
The hardest thing for me Is the lack of support from my family. They are so mean. They just tell me every day to stop talking about it. I need to talk about it I am scared to death. My doctor says everything is fine my reflexes were good my blood work fine ct fine mri c-spine fine except cervical spondyilosis. I did notice that the reflexes in the my left leg same one of the arm is atrophied the reflexes there were almost super alive. Kinda like Zen said he could kick the dog over the fence.
How do i not get mean when my family ignores my need for some time of communication and supportive love... I feel so alone. I dedicated my 21 years to my marriage serving and taking care of their every whim and now I need them and they are blowing me off calling me a martyar I feel betrayed I am so scared and broken hearted all at once.
Please advise me. If I am diagnosed with als I think I will need to go and be alone I will need all the positive support I can get to not become bitter, even now while I am waiting the scariest time of my life.
Thank you for letting me ramble. I am really trying to think positive but I am failing. I will try harder tomorrow.
Robin
My email
[email protected]
This email name was before I started to get sick maybe I will be happy again