sisstg
Member
- Joined
- Jul 9, 2010
- Messages
- 14
- Reason
- Learn about ALS
- Country
- US
- State
- utah
- City
- rural
I am frustrated and scared because my symptoms have gotten so bad that I can barley leave my house for the last three months. My dr gave me a referral to the mayo clinic but they wanted to wait to get my EMG results to make sure I was going to the right speciality clinic. What is really worrying me is that I finally had an EMG done(the dr had done emgs at the mayo clinic for years and recently semi-retired to our city) and the results are taking forever. the dr said nothing after the emg and the dr that ordered the tests cancelled my follow up and said he would send the emg results directly to the mayo clinic. I asked for the results but the office said they are still getting the report done(I would think a mayo trained EMG dr could say something to me and not take weeks to write results?)The mayo clinic is 3 months out booking so I just get to sit here and wait?
I started having symptoms that changed the way I had to do things at the end of last year. Some symptoms could have happened prior(oddly I had unexplain mild atropy in my right leg 12 years ago but nothing progressed) but last year I had to start changing what I did. It started with not being able to drive more then 20 minutes without my leg getting so tired and weak. Then I started having trouble walking the kids to school(which is less then 2 blocks away), I would get soo tired espcially my legs, be out of breath and it got to the point where I would make it half way and my legs would give out. I fell several times.
My primary care dr kept saying I was stressed or it was a virus. I even went to a psychatrist who said it was not stressed and got very mad at my primary care dr for not doing more.
By May I had trouble even getting up to go to the bathroom and showering. One issue is that my pulse goes so fast (usually about 120 but up to 150) just getting up to go to the bathroom, once I lay down it goes back down. I get exhustaed even talking on the phone and if I talk more then 30 or so minutes I start to slur. My husband and kids sometimes have a hard time understanding me. My son says I talk like I have strep throat and my s's sound weird.
In May my left foot which was already weak when I stood on it I get a sharp pain on the top of my foot so I am walking on the side of my foot. My left hand over the last few weeks I usually type with my index finger but it is stiff soo I use my middle finger to type. In the last month or so I have twitches at night in my calf and forearm. It is hard to get to sleep and I wake up almost every morning with one side very numb (the side I sleep on). I am also constantly yawning which makes it hard to get to sleep so I have to sleep sitting up.
Some other facts. I am in my late 30's. I am average weight and height (though never an althete I used to be able to walk several miles a day without issues, I'm not in perfect shape but not out of shape). My left upper arm and leg ache if I try to push myself.My brain MRI for years has showed some white spots but they never change and no one can say what they are. Blood work shows on off positive EBV/CMV infections, Factor V positive, high homostine, low lympocytes and had showed low B-12 but I take extra now and it is okay.
I appreciate the board and any opinions. My grandmother had ALS(I was born 10 after she died) but I know it took a huge toll on my mom's family because there was not alot of outside support then.
I started having symptoms that changed the way I had to do things at the end of last year. Some symptoms could have happened prior(oddly I had unexplain mild atropy in my right leg 12 years ago but nothing progressed) but last year I had to start changing what I did. It started with not being able to drive more then 20 minutes without my leg getting so tired and weak. Then I started having trouble walking the kids to school(which is less then 2 blocks away), I would get soo tired espcially my legs, be out of breath and it got to the point where I would make it half way and my legs would give out. I fell several times.
My primary care dr kept saying I was stressed or it was a virus. I even went to a psychatrist who said it was not stressed and got very mad at my primary care dr for not doing more.
By May I had trouble even getting up to go to the bathroom and showering. One issue is that my pulse goes so fast (usually about 120 but up to 150) just getting up to go to the bathroom, once I lay down it goes back down. I get exhustaed even talking on the phone and if I talk more then 30 or so minutes I start to slur. My husband and kids sometimes have a hard time understanding me. My son says I talk like I have strep throat and my s's sound weird.
In May my left foot which was already weak when I stood on it I get a sharp pain on the top of my foot so I am walking on the side of my foot. My left hand over the last few weeks I usually type with my index finger but it is stiff soo I use my middle finger to type. In the last month or so I have twitches at night in my calf and forearm. It is hard to get to sleep and I wake up almost every morning with one side very numb (the side I sleep on). I am also constantly yawning which makes it hard to get to sleep so I have to sleep sitting up.
Some other facts. I am in my late 30's. I am average weight and height (though never an althete I used to be able to walk several miles a day without issues, I'm not in perfect shape but not out of shape). My left upper arm and leg ache if I try to push myself.My brain MRI for years has showed some white spots but they never change and no one can say what they are. Blood work shows on off positive EBV/CMV infections, Factor V positive, high homostine, low lympocytes and had showed low B-12 but I take extra now and it is okay.
I appreciate the board and any opinions. My grandmother had ALS(I was born 10 after she died) but I know it took a huge toll on my mom's family because there was not alot of outside support then.