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lcav281

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Aberdeen
Hello, I am new to the forum. My symptoms started this past summer. First noticed easy leg fatigue bike riding with my husband. I just couldn't quite keep up with him as normal and had to keep shifting down as my legs would get so tired. Same leg fatigue was happening upon just doing 2 flights of stairs as well. I am 46 years old, 5'6" and 130 pds. I have always been an active person and in average shape and no prior medical conditions. I had noticed I had been getting mentally fatigued as well. Waking up in mornings not feeling like I slept. By mid September, the fatigue was so bad I had difficulty functioning normally in my day to day tasks. I am not talking about feeling sleepy and needing a nap...this is more like feeling like I hadn't slept in days or just got done digging a ditch for 12 hours in a 105 degree day in the hot sun! My left leg/foot was getting much weaker and very easily fatigued and heavy feeling. Soon after, my left hand was starting to get weak,easily fatigued and heavy feeling. Then the twitching started in my left sided leg/foot & arm/hand. My left hand had become uncoordinated and clumsy. Also alot of neck pain that feels like tension which then causes headaches. I have muscle stiffness in my legs and and joint pain in knees and ankles. I have alos noticed decreased muscle in my calves and decreased fine muscles in left foot and left hand. I have been unable to work since mid September and it was then that my Dr. started running me through a battery of tests. Lyme disease, west nile (3 times), MRI & CT scan on head, an overwhelming abundance of blood work, spinal tap....everything keeps coming back normal. Dr. said....no brain tumor, no MS, no stroke, no aneurism. I am very glad that all these things are good....but then what the heck is wrong with me? After the Dr. ran out of tests that he could think to do on me and being very puzzled himself, he referred me to the mayo clinic in MN neurology dept. After mayo reviewed my files to see if they would even except me as a patient or not...a got a letter that they declined me. They said they didn't feel they had any more testing to offer me than my gp had already done. Hmmmm. I didn't quite get that and I was very disapointed about that. Aren't they specialists? Don't they pride themselves on diagnosing things that other Dr's couldn't? I hadn't even had a EMG or anything close to that done yet. Anyways, so my Dr. referred me to a neurologist in SF. I have only seen her once so far and go back again in 2 weeks. She did an EMG and Nerve conductive and said she was "pleased" with those results. She did say that I had over-reactive reflexes. She thought maybe there was some stenosis or other nerve problem in my neck and sent me to have an MRI on that. That came back fine too. In the meantime, I havent worked since mid September. Have medical bills coming in for all the tests that keep coming back fine...and still have no answers. The weakness and twitching is now starting on my right side and getting alot of twitching around my mouth area and cheeks. I also notice that I am very sensitive to heat. Seems like I get over heated easily and when I do I get an overwhelmiing feeling of exhaustion and fatigue. My gp started me in occupation/physical therapy and have had only one session of that so far. Upon my evaluation...the therapists said I have sygnificant loss of coordination in my left hand and Weakness on both sides of my body in which my right side is almost catching up to my left sided weakness. My therapist started me on some really low weights and a stair stepper. KICKED MY BUTT! He said he was starting me out slow....and I thought if this is slow, what the heck it gonna be like when he works me hard!

My Neurologist has not mentioned the words MND or ALS. But being so frustrated with no answers and wanting my life back....I started researching on-line. And based on my symptoms and what they have ruled out, I keep coming up with ALS. From what I understand there is no ONE TEST that diagnoses ALS and that it is a process of elimination. Well, they have ELIMINATED sooo much already....I am worried that they gonna run out of things to eliminate.

Even though my EMG was good...I wonder if it that is just because my symptoms are so recent. I have read other confirmed ALS patients that too had good EMG results in the beginning, and had bad results later.

My question is: Does my story sound anything like what anyone else went through before getting a diagnosis? OR Does anyone know of anything else that it could be OTHER than ALS based on my symptoms? I am so frustrated with no answers. I think I can accept whatever it is...good or bad. But HOW do you accept something when you don't know what it is your supposed to accept? And the NOT KNOWING is a killer. I feel like so much time wasted waiting for a diagnosis when I could be out traveling or whatever with my husband while I STILL CAN! It's kinda hard to do that right now not knowing what my future holds. How would I explain to my employer that I can't come to work....but I can go out vacationing? But if I knew that I wasn't going back to work because I am terminal....heck ya, I'll be doing what I can while I can. But I just don't know.....
 
Did they do a muscle biopspy? It took a muscle biopspy to get my diagnosis. I have an abnormal emg/nvc and weakness is my muscles and neuropathy in my feet. I started having severe fatigue where I could hardly brush my teeth or dry my hair. My dr put me on mestinon 1 tab 3 times a day and omg did it work. While I can't go like the engergizer bunny I can clean house and do other normal day to day things without thinking I was going to fall over.
 
Kay I think that if your neurologist said she was pleased with your EMG results that should ease your mind. It was hard to read your story because of it being one big paragraph. In the future point form would be much better. Many members here do have A L S and it isn't fair for them to try and wade through material that all runs together. Your symptoms could be caused by many things ie. stress, BFS, viral, muscle inflammation. You have an appointment in 2 weeks so make sure you go in with a comprehensive list of questions in point form. Example 1) why do I have brisk reflexes 2) did my EMG rule out A L S, CIDP, MG , other autoimmune diseases3) do you think I may have had a virus that caused this 4) is itpossible I had Guillaine Barre Disease 5) is it possible that I have an inflammatory muscle disease 6) do you think my symptoms are hormonally based etc. etc. Write down in point form questions that relate to your concerns. Listen and take notes when she responds. Best of luck and let us know the outcome please.

Laurel
 
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@ Vickim - No they have not done a muscle biopsy. I think I will ask my Dr about that mestinon for my fatigue. Thank you so much! I am so sorry for your diagnosis. Whatever this is that I have good or bad...I sure learned a lesson from it. NEVER take health for granted because that can sure change fast. God bless you!

@ laurel - I am sorry for the long huge paragraph. I can see what your saying now that I look back at it. I guess I just kept rambling on trying to get into writing what I was thinking and not thinking about the people that would read it. Thank you so much for the advice...you have been very helpful! God bless you as well!
 
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