For New People: Muscle Fatigue vs Weakness

[Whopper]

Great post and excellent stickies. I have been diagnosed with FTD with the suspect MND. I have my right leg that does not want to move at times. I also cannot walk heel to toe. I have muscle spasms and my FTD was diagnosed via SPECT imaging and by a neuropsychiatrist, neurologist, and neurosurgeon. I have respiratory problems which makes me move sluggish. I am being sent to a Dementia Clinic and also will revisit my primary care to make long term plans.

 

[lauralea]

I have been dealing with this since December or January; going from one doctor to another. I finally went back to the neurologist and told him I had to know something. I have become so weak that I had to retire (I am a Medical Social Worker) and can no longer work, dress myself, cook or go shopping or even hold my new grandbabies. He finally took me serious and started running test. In March my Creatine Kinasa level was 609, last week it was 720. He wants to have a muscle biopsy which I couldn't get scheduled until the 21st of this month because the surgeon wants to wait until he can have 4 or 5 in one day to do. Just about everything else has been ruled out and all is left is ALS or polymyositis. If it is ALS I will deal with it; I just need to know something and am getting very frustrated.

 

[Nikki J]

Hi Lauralea
I am sorry for all you are going through. Have you had an EMG? What did that show? If they are doing a muscle biopsy it seems like they are sort of leaning away from ALS?

By the way you probably will get more attention if you start a new thread of your own

Good luck hoping the muscle biopsy shows something! Anything is better than ALS!

 

[lauralea]

Thank you for your reply and your support. Actually I have been dealing with this longer than I thought. I had an EMG In October last years and he concluded that I showed active denervation potential which suggested brachial plexopathy. After the MRI, with and without contrast, no significant abnormalities were found. the Neurologist is the one that mentioned ALS since I had an uncle and a cousin who had it on my father's side and my father died young.

 

[Nikki J]

I am so sorry to hear about your family. I am from a FALS family as well and am gene positive. I will pray that this is not ALS. Has your neuro spoken of repeating EMG if biopsy is negative? Let us know how you are doing