Luke

Hi Lukie,
Good luck with your interviews. Hope you have a good week. Our week started off better then last Friday when I forgot to set the alarm clock. All three of my kids were almost late for school. I never seen our twins who are 15 move so fast in their lifes. lol We are big fans of the St. Louis Cardinals baseball team so we are hoping they will win the World Series like last year. We can dream can't we? Take care, Kim

My muscle biopsy came back abnormal and the dr sent it off for more testing. The dr said I have mito. I had no idea what that meant he just said it is in every cell in your body and it is what makes energy for your body. I asked him what could be done and he said there isn't really anything. I have looked it up on line which everyone says not to rely on that but I had no choice. I also found a website the united mitochondrial diease foundation that has some information. Good luck with your biospy.

Good luck today!

Thank you. Have you looked at the mitoaction website? It talks about diet and the different cocktails. I am going to ask my doctor about it. This is all so frustating. I know there is nothing anyone can do about it. It is what it isbut that doesn't make it any easier.

Hi
I have an appointment with my neurologist next week and I want to ask him about the mixture you talked about. What do you mix the creatine monohydate in or do you just take it by the teaspoon ? I am having terrible fatigue problems.

Agreed Luke!

Hey Luke-

Thursday today... when is the interview? Wishing you all the best. YOU CAN ACE IT!

vickim
Hi Luke

Well its a long story. But needless to say I have had more tests than i can count. I've had brain scans, mri of my back, and neck. Numerous blood tests and I have had 3 or 4 emgs and a muscle biopsy. Over the last nearly 5 years. My sypmtoms are fatigue, walking problems, numbness, crawling sensations all over, twitches and involuntary muscle spasms, muscle weakness in my arms and legs. Reflexes are slow according to my dr. I have some trouble with memory although that could be age. Nerve pain which i take gabapentin for and it helps some. What else do you want to know?

Hi, Luke. Just realized you are a fellow Oregonian. If you don't get some satisfaction at your next appointment, ask for a referral to OHSU. Personnel at the Neurology Clinic there are the experts in this State. That doesn't mean they know everything we as patients would like them to know to help us, but they seem to be capable of identifying the problem.

Old Dog

Thanks Luke! I have a neuro app tomarrow, hoping she tells me something! (good preferably) this weird symptom stuff stinks, but it could be worse! Hope your doing ok!

Thanks for saying Hello, Luke. I will keep you posted. I'm sorry for your struggles and I hope you have more answers soon as well.

Hi Luke no answers , Just the same symptoms that started a couple of years ago and have slowly gotten worse, namely breathing troubles that are worsened when lying down, bodywide fasciculation24/7 including the tongue,some stiffness in the fingers and slightly slurred speech. I have not lost any abillity of body function in nany part of my body and as yet the only diagnoses I have been given is "Something neurological " but due to the fact that I am still as strong as an ox (I still work as a bouncer!) then I am totally convinced that its not mnd . I just dont know what it is . I would love to hear your story and maybe offer some insight ? Look forward to hearing from you .. Take care and God Bless .. alex

Sorry I got cut off, just wanted to tell you to try not to stress, I know it's hard, but I see your app is in a couple weeks, take some deep breaths and try to think of something else, it's hard but it helps, let us know how it goes, and if you need to talk just send me a note, I understand!
Kathy

Hi Luke, I know how it feels to stress out when you don't know what's going on with your body. I went through such anxiety that I would just lay in bed and cry. I still don't know what's going on with me, my tongue feels tingly, and have some atrophy and weakness in my leg, I don't have als

Oh you're welcome. I'm not the nasty b some people make me out to be. I pray that you get answers quickly and they are all good.

Toto