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happy

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I went into the hospital on Thurs. because I was feeling dizzy and legs were heavy, slurred speech. I thought I could be having a stroke. When the nurse took my blood pressure it was 147/87 very high for me I am athletic and usually run 110/60. I have had shortness of breath for several days. The clincher for me was that the doctor said after giving me a MRI of spine because of muscle wasting in left hand between thumb and index finger that I have spondilosis of the spine. And that my symptoms were caused because of spinal cord compression. But after reading all of these symptoms I am really afraid. I am 48 and have 5 children and two grandchildren. I see the neruo surgeon tomorrow. I am on a leave of absence for now I dont know what I will do. Oh I have also had the heavy head and severe fatigue. It's so hard to explain the symptoms to anyone. I think my own children think it's all in my head. I am not ready to die.
I need to change my attitude and find out what God has for me. Please pray for me. I have read all your posts I admire your courage, sorry for the long post.

May God have mercy on us all
Robin
 

ccox

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Robin, I'm sorry for your health troubles. I can assure you that you don't have ALS. Symptoms don't appear suddenly. They come on very slowly.
I wish you luck in a quick diagnosis of your ill health. I'm sure it's very frightening.
 

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Hello Robin. I hope we can help relieve some of your concerns. ALS is so rare and your symptoms can be caused by so many other things so maybe it is not time to worry yet.

If your local docs do not uncover the reason for your poor health, you might ask for a referral to a major neurology clinic at one of the teaching hospitals, but if your experience is anything like mine or several others it might take a long time to find out what is going on. That's the bad news: the good news (according to one of my Docs, anyway) is the longer it takes to find out what is wrong, the less chance it is something incurable or untreatable. Cindy
 

happy

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Am I crazy!

I guess I should have clarified that I have been having muscle wasting and atrophy in my hand since June 07. I still was able to go to the gym and lead a regular life, I just did not have the strength or normal grip in my hand. I t wasn't until recently that I began to have the symptoms of hand numbness again (a different sort of feeling) I can feel the strain of trying to use it and it feels weird. The "off balance" thing started about the first of Feb. along with it is extreme fatigue and shortness of breath slurred speach at times stuttering, loss of memory,inability to put thoughts together, some twitching in my left side and in my hand , not regularly though.
The hardest thing is I am trying to tell people and no one takes me seriously in my family. They think because I am online looking up my exact symptoms that I am working myself in a sickness. I too have noticed that my skin is thinner and has lost its elasticity. Menopause? this has been going on before the onset of symptoms. I am not able to see the neuro surgeon until the 22 I talked to my family Dr. I have an appt. tomorrow...I am so discouraged no one is taking me seriously...am I crazy? I try to do things normally but I cant. I feel unbalanced and sick. Yet the symptoms come and go one moment I can be talking normally then the next hour I am stuttering and slurring slightly.
How can I get though what seems like an impossible time and be normal? My husband and children believe I am making a bigger deal out of my symptoms than I should. I just dont feel right I am afraid to walk alone that I might fall somewhere and I dont have the energy to explain. Am I crazy what should i do? What questions should I ask my dr. tomorrow. She mentioned on the phone that I had a Ct brain and it was normal, I had an MRI c spine and that revealed a very slight cord compression. But she said it would cause these other symptoms. Im baffled.
Please help.
Robin
 

happy

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re: am i crazy

I said the dr said the MRI cspine would cause these problems what I meant to say was it would not cause these symptoms. :confused:
 

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Sorry Robin, I didn't understand in your first post that some of your symptoms were ongoing and not sudden.
I found with my mom (diagnosed June 07) that it was helpful for her to write down EVERYTHING that was different or difficult and take it to her neurologist. Then he had a full picture of what was going on with her on a day to day basis.
I'm not saying you have ALS, I'm just saying that sometimes doctors don't understand if they are only getting parts of a puzzle. For instance, my mom didn't think it was worth mentioning that she could no longer button her pants or hold a pen.
Your thoughts and fears are legitimate. Keep at it until you get a definitive diagnosis of something. Try really hard not to go "worst case scenario". For example, your hand weakness could simply be carpal tunnel syndrome. Your extremely high blood pressure might have been stress induced because of fear of a stroke.
Keep in touch here and let us know how things play out. Best wishes for a diagnosis of something other than ALS!
 

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i had a severe onset like yours...i thought i had a stroke...i still have problems four months later and no closer to a diagnosis...i did have a pituitary tumor and almost no cortisol in me when i ended up in the hospital... i have to tell you, i get bad headaches and dizziness and fatigue and stagger like a drunk sometimes, so, if they haven't checked ALL of your hormone levels at the RIGHT times...i would definitely investigate this...i also have atrophy...the EMG done states that it is peripheral neuropathy...i would suggest getting an EMG/NCV. You could have a whole combination of things going on...isn't menopause great?
 

happy

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Thank You

Thank you for your posts. I do agree that writing things down daily is a good idea. So many times when i get a symptom and someone asks me what is going on I forget about certain things that were rather important. Also, I am afraid this is going to take awhile to get any answers. Here in the Sacramento area I have no idea where to start with a neurologist or anything. It seems no one seems to take my symptoms seriously.
Yes, all of this and menopause! It's great to be me,:oops: (that's me having a hot flash!)
Well, it's late and I need to try to get some sleep. Yea, I had a little body ache today it was kinda weird stiff and achey. You all have a good nite's sleep. I'll be back tomorrow.
 

happy

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My Dr's Appt.

Well, I went to the dr today( GP )and she said that everything was normal. My blood work was fine my reflex's were good not indicitive of neuro damage and that my ct should have shown if something was wrong. I asked her to explain to me then why my hand between thumb and forefinger is basically gone and not usable for small detailed things. She suggested that I go to PT. I also asked about the slurring and the feeling like i am going to trip the small muscle twitching that goes on on that side of my body. She attribute it to stress. I am so confused. The symptoms that I am having are so subtle that I seem to be the only one who notices them and yet they are so huge! Believe me I DO NO WANT this ALS or MND or any thing like it and I think it is the saddest of all dieases. Why should someone have to have all these symptoms and not at least get the peace of mind in knowing what is wrong! God, it is so terrible! My arm has been feeling achy and stiff. My body has been sore and stiff. I have been having mild twitching in the same side of my body. I still am stuttering and off balanc eoccansionaly. Not my usual self. I need some answers or some questions that I can answer that will help me. I am so scared. I need to know. I still have an appt. with the nero surgeon on the 22nd of this month. I am afraid of getting my hopes up for any answer that might give me some hope. I dont want to go on like this just getting worse and worse and then not able to move, then oh, yea, you have als.
Quickly before I go should I get a rather large life insurance policy to care for my family while I am still somewhat healthy and the medical profession is proclaiming I am fine? Just a question in case anyone would care to answer.
Thanks
Robin
 

happy

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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
 

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bitter, even now while I am waiting the scariest time of my life.

It gets easier with time, Robin, regardless of what they find, Even if they do not find anything! :) Cindy
 

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robin,

Did you go to the nuero surgeon yet about the mri of the spine? Get his opinion, he probably will do a full nuero exam on you.
The atrophy in your hand can becoming from it.....
Alot of your other symtoms can be anxiety or stress related, are you taking anything for anxiety?
Please try and think positive, if it is coming from your spine it can be fixed with surgery.
Don't jump to ALS so fast, so much has to be ruled out first.
 

happy

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Thank you

Thank you for answering my post:
I know that I am very nervous and maybe jumping the gun. I am trying not to. I just hate the wait while I am experiencing these horrible symptoms.
My neuro appt is on the 22nd of this month. And just for the record I had a couple of beers last night and i seemed alot better, I am taking klonopin for my anxiety and it seems to be helping however I am still short of breathing and extremely tired. I have never felt this tired in my life. WEIRD.
Thanks so much for your posts to me I feel so alone at home its good to have someone to talk to.

Sincerely.
Robin
 

happy

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A Good Day Compared to the Others

Hi everyone,
Well today I actually had a good day, accomplishments wise. I cleaned my house and only slept for about 2 hours. I did not feel the pain I have been feeling and I did not trip or feel strange in my legs! I did have just a tad bit of slurring but not hardly noticeable even to me. My eneregy level was about the only thing that I can say was a pain in the butt Maybe I am getting better. Small bit of acheing in my arm, short of breath a bit but I did have some strenght in my arm.
Maybe my prayers are working. I used to complain about having a very stressfull job working in the ER but if everything is okay with me I will never complain again, I promise!And more importantly, I have donated many weeks voleentering my time to help organazations like I was the chair here in sacramento for Walk for Hope. I spent 3 weeks in Houston serving the Katrina evacuees. And I have spent countless hours preparing meals and feeding the homeless. But now having been so close to the pain and the agony that I have read in these posts I will spent my time figuring out a way to bring awareness to this very isolated diease. I just pray that my symptoms gradually disappear.
Thanks for reading
Robin
 

happy

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I Feel like I am talking to myself

I have had these unexplainable symptoms for 3 weeks now. Some days they are worse than others. I am alone, even on this website. I feel a deep depression setting in. I want to cry all the time. I have no where else to go not drs not specialists, just my self but my exaustion keeps me isolated.
Thanks for the encouragement.
 
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