Follow up with Neurologist

[Ernie]

Hi,

Last month I was telling you that I went to see a new neurologist. He wanted to see my sister to compare her with me. After testing her in his office he concluded that I my muscle weakness/paralysis is not the same disorder as POTS. So I will have an EMG at the very end of May. I am glad becaus after I was diagnosed with POT, doctors would put all my sympoms under POTS without testing. This guy did hs homework and read on POTS to figure out if it was part of it or not. I feel that new doors are opening up.

Thanks for your support.

Ernie

[DawnA]

This is good news Ernie! I am sooo happy you found a Dr who cares and is putting forth extra effort.

Dawn A

[briarrose]

Ernie

This is very good news. I remember a couple of years ago, reading about your horrible medical nightmere stories. I felt bad for you and all that you were going through. It seemed like no one would ever take you seriously and give you the help that you much needed and deserved. Look at you now. You have made so much progress. Congrats! Keep up your persistance for you and others like you

?One small step for man, one giant leap for mankind."

Neil Armstrong

Steph

[kristinp29]

That's fabulous, Ernie! I'm so glad that you found a doctor who was willing to do some research!!!

Have you been experiencing the paralysis lately? I hope you can find some answers for what's causing it for you. The paralysis that I had was classified under POTS. It'll be nice once you have an answer.

Best wishes,

Kristin

[opus88]

Ernie, that's terrific. I'll be keeping my fingers crossed that you get some definitive answers soon.

Extreme muscle weakness can be experienced if the glycogen (I think I have the right word) is not getting pushed into the muscles. Four days on a hefty dose of GTF Chromium brought a world of difference to me, and continued to bring improvement over a few months. Just wondering if that might be pertinent to you.

[Ernie]

Thanks Dawn A, Steph, Kristin and Opus,

Opus. the Chromium you are mentionning, can I use one from any producer or does it have to be from one special brand?<

Kristin, the last time I paralysed was last month during the neurological exam and after I was done. I paralysed about 6 times during the exam. Since I know my triggers I avoid them as much as possible but when I have a neuro exam they trigger the paralysis. My paralysis is also triggered by fasting and straining. There are a lot of my family members with POTS but I am the only one who paralyse. That's why the doctors are starting to think that I have 2 different disorders.

Thanks Steph, I have gained much respect from the medical community now that I have medical proof that it is physical. I was telling my therapist the other day: "Well, I guess I won't die healthy now". meaning that a few years ago I felt that I was on the edge of dying and doctors thought I was healthy. Now I have proof to the contrary. Sooo, I am still pushing for answers.

Have a nice day everyone.

Ernie

[opus88]

The only chromium I had ANY result from was Nature's Sunshine brand of GTF Chromium. Not sure why it's different, but it sure took care of my extreme muscle weakness and that feeling of incredibly heavy limbs! I took mega doses of 9 per day for a few weeks then weaned back to 6 and eventually one, but after only 4 days I was able to enjoy a relatively normal day (12 hours, including much walking!) for the first time in many months. Now I only take that on need, which isn't very often.

[Guest tearose]

Hi Ernie,

You sound so strong and self confident in how you are proceeding! It is great that you see doors opening for you, I am so happy for you. I know you have still a lot to do but finding good medical care is a big step.

Remind us about your EMG in May because we'll want to help you through that step too!

best regards, tearose