Advice on EMG's , symptoms and how to proceed.

[Matt71davis]

I appreciate any advice that the members here can give me. In Sept of 2012 I thought I was coming down with a slight case of the flu. Muscle pains all over and fatigue. These symptoms progressed to widespread twitching, numbness mainly on left side of body, dizziness, strange sensations " like goose bumps " frequently, flaccid muscles all over and weakness on the left side of my body. My GP sent me to a local neuro that did clinical exam, EMG and nerve conduction study. He did find what he termed as minor fasicilation but that everything else looked normal. He said probably a viral infection of the muscles. I followed up with him in a month because my condition had not gotten any better. Weakness had increased slightly and I had atophy on the leftside of my body. Watch and rings no longer fit skin beginning to wrinkle and I could no longer do any exercising. Before my initial episode I was working out and running about 8 miles a week. I explained to him the issues with the left side of my body and that my hands and feet were hurting and felt strange, twitching etc. He performed another exam and confirmed his original diagnosis. This time he stated infective myosotis. A month later my condition had stabilized but I was still not right and my muscles continued to twitch hurt and be very sensitive to even touch. I went for a second opinion with a neuromuscular specialist @ UT Medical Branch in Houston. At my initial appt she reviewed all my records blood test mri's etc. she stated all looked good but she would do her own test. She performed her own clinical strength exam , EMG and nerve conduction test. Her findings were basically the same as my first neuro. All test were within normal ranges and she didn't find anything that would indicate ALS. I want to rely on what the doctors are telling me but my condition continues to worsen. My tounge and mouth are fatigued very easily and I can not walk up the stairs without gasping for air and my chest hurting. I am at a loss as to what I should do. I am only 42 prior to Sept was in very good physical condition. I am looking for advice from anyone that may have had a similar experience. My doctors see most of the symptoms but neither will acknowledge the atrophy that I am now experiencing all over my body. My wife and friends see it but they say it is because I have stopped working out. I am still able to do normal everyday things but lifting objects and even typing is more difficult. Please review and any advice is appreciated.

 

[vickim]

I understand your concern. I went to 2 gps and 3 neuros before I got a diag nosis. It took 5 years to find out. All I can say is you have to do what is right for you. The deciding test for me was a muscle biopspy. I had abnormal emgs though.

It is all about finding the right doctor that will listen. I ended up at a university hospital. The second neuro (who I saw twice) said she did not know what was wrong and refered me to the university. I did not know what was wrong just that something was wrong. I felt like I was going crazy and tired of explaining over and over what my symp toms were. I feel for you.

Keep a journal of your symp toms, how long you had them, what you were doing when they came on, how long they last. The more information you can provide the better, and keep notes when at the doctor. It is hard to remember everything once you get home.

I hope you find out what is wrong soon. In the mean time try not to stress because it can make you even sicker. Its not easy I know but you have to try. I wish you peace.

 

[laurel]

Since the first doctor did diag nose polymyositis, it sounds like you need to head back to him or ask for a referral to a rheumatologist with the view to investigating polymyositis further and with the view to treatment for it. Symptoms do sound related to that diag nosis. Best of luck.

Laurel

 

[kiara]

Matt71 If it's myositis, it's a treatable disease so you can go to a good specialist and ask him to confirm that diagnosis or not. If it's not probably you are another one in this "wait and see" Limbo. I know it's not easy at all cause you see your condition getting worse and no one is able to give you answers...it's been several months that I'm having symptoms similar to yours and lots of tests done but I'm still undiagnosed. Try not to worry too much and keep on going to doctors looking for answers. Good luck