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vickim

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I would be ASKING her a lot of things. Did she mention weakness? Have someone go with you to help with questions and remembering answers. write down your questions and take notes on the answers. get copies of emg to take with you.

You know your body and you have to be your own advocate. hang in there, you will get answers.
 

Xfile1966

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I have left sided weakness -have had it for years. Head to toe. But there is nothing I cant do if I had to absolutely do it.

Ive been lightly stretching and exercising my legs at night. They ache and hurt regardless so I'm hoping to tone them a bit. I belong to a gym but I'm thinking weights are not a good idea.

Exercise is a problem because I have scoliosis in my lower back and it has damaged some vertebrae and herniated a disc. I didn't even know it was there until my back started hurting a year ago. So no more twisting and turning in yoga for me.

I definitely believe in being my own, and my children's, advocate. All I want is a correct diagnosis - then we can go from there.!
 

vickim

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I too have scoliosis and back damage from a fall. I read that scoliosis is a sym ptom of mito. I would ask for the muscle bio. I have clinical weakness all over among other things. Also fatigue, exercise intolerance, I get tired drying my hair and brushing my teeth.

I have had this going on 7 years. In march it will be 2 years diag nosed.
 

hjlindley

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The EMG pattern that is used in diagnosis of ALS is denervation/renervation. It is different than you would see if the nerve was compressed.
 

Xfile1966

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I definitely am going to ask for a muscle biopsy. And get tested for Lyme.

I had 2 muscles in my cervical spine area that showed chronic denervation/renervation. The rest of my muscles were fine. Because these 2 were off I had the cervical MRI. The lady doctor who did the EMG said no ALS and so did my normal neuro I followed up with.

I am just exhausted from everything. I don't sleep well, my energy level is shot during the day, and if a "crisis " of some sort happens I just go downhill and get shaky and even more weak. I am a strong person and don't like to cry, etc..so I really hope Emory can provide the answers I need. :)
 

vickim

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I really hope you get answers. Yes I agree stress and unexpected things cause me to be wiped out and very shaky, weaker than normal. Over doing such as lots of walking can do the same thing. Good luck.
 

Xfile1966

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The key is to never give up and advocate for yourself.

Vickie you and I seem to share a lot of symptom - weakness, scoliosis, heart rhythm issues - I have hope mine it mito as well (not that I wish it on you)!

Ive decided to order the 23andme medical /ancestry kit and take the test. It may show some medical markers/traits that could be helpful for Emory (if they believe it).
 

vickim

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Well while mito is no picnic it is better than als. what is the kit? Never heard of it.
 

Xfile1966

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Vicki its hard to explain. Go to google and search for 23andme. It seems very interesting. Not sure how accurate it is but for someone with no family history like me its worth s shot.

I imagine doctors hate things like these but like you said - we know our own bodies best and have to get the best care possible.
.
 

vickim

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It is not too costly and very interesting. If you get it done can you pm me on how well it worked? Might be something to look into.
 

Xfile1966

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Vicki - do you ever suffer from vertigo? I had a really nasty headache Friday and Saturday then I woke with vertigo in the middle of the night Sunday. Still here today (of course its s holiday week so difficult to get in to see a Dr) so I'm taking sudafed hoping its sinus related.

I don't remember vertigo being a symptom of ALS (this is not being off balance -the room spins if I move my head or eyes too quickly).

Its like every little germ that goes around I catch nowadays even though I'm on vitamins.

:)
 

vickim

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Yes, I had terrible bouts of vertigo. The room did not spin, but when I tried to walk it felt like the floor was a moving wave and bending down was dangerous because I felt like I would fall over. My dr thinks it is fatigue. He increased my meds and it has helped. I still get vertigo sometimes but not as severe and long lasting.
 

Kosmoskatten

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I would ask for a lumbal puncture if you have not had one already to rule out MS/Lyme.

Vertigo can be present in both of those conditions.

But, vertigo can also be present in compressed nerve issues, especially in the neck, since it reduces oxygen flow.
 

Xfile1966

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I have never been checked for MS or Lyme. I hope the experts at Emory do so. My orthopedic doctor (for my scoliosis and degenerative back problems) says it could be MS because it tends to be worse on one side, I have sensory issues, and vertigo. But she also said it could be one of MANY types of Mito disease.

She is the one who did my latest EMG and she noticed denervation/renervation in two (2) muscles in my neck/upper back and sent me for an MRI. Lo and behold, vertebrae and disc damage in my cervical spine plus 3 bone spurs that are sticking into my throat in the front.

I have a feeling the vertigo is due to sinuses though - I'm taking sudafed and clariton to see if it clears up. If it doesn't by Monday I'll go to my GP.
 
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