Questions
 

Hello,

There are a lot of people who go to mayo or Cleveland clinic and still come back without a diagnosis or fibromaylgia as diagnosis for body wide pain( spasms and nerve pain).

For the ones who have gone or know. Do mayo or Cleveland run genetic test looking for diseases that go with the symptoms.

At the end when biopsies are done and bunch of blood and diagnostics are done what will they do anyways!

Does any one know how anyone can get into bien a volunteer! U know how u can go to dental school to have teeth done so they can practice. I wonder if there is such thing as volunteering so learning docs can try to figure this out for u?

Tulips

See if your doctor can get you into this:

http://rarediseases.info.nih.gov/Res...aspx?PageID=31

Thanks mrs d.
I am getting that done next week. My gp typed up a letter of recommendation on her behalf so I will send that to my Neuro. He said he will put everything together. But he said it's hard to get in. So let's see.

Other then that I am going to call local universty hospital see if they want a experiment on me!! Well have the students have a go!

Tulips

Interesting......
 

Tuplips, Rose and I could really give them a challenge!

I'm not sure if I have the energy (physical and mental) to pursue this right now, though. I am feeling quite worn down lately.

But thanks for info Mrs. D.

Thanks for this, I'll ask my Dr. about it this week.

Recently my Neuro told me that there are alot of patients like us. He has several patients with all over burning, spasms, twitching, parasthesias, who DO NOT have loss of sensation. He said that the medical community do not have a diagnosis for this yet, and that he thinks it will take 10-15 years before they have a Name for it. But he said that even if they did have a name, the treatment is still just pain management.

I would imagine that if we all applied to the NIH, they would be the ones to come up with a Name for this?

Yes, I'd call it Iatrogenic neuropathy!

The epidemic of this in younger people is also alarming. I think vaccines and drugs are to blame.

It will be a cold day in hell when doctors admit to causing this in people.

i had to look that one up

Not sure I understand.......
 

isn't iatrogenic neuropathy when a nerve is damaged at the site of injection? Wouldn't that only affect one particular nerve in path, not body wide paresthesia?

Mrs d I know I had this before I got flu shot but the flu shot in 2003 ruined my life. I went from 10 to 10 million. Doctors don't admit it. Only one Neuro says well if u have immune system problem and that's where my symptoms are coming from then it makes sense that it was an attack for my body and it couldn't handle it.

I have had this since 17 and now 32!! It's been exhausting! I am exhausted from hurting. And I mourn the life I lost! Don't want to be a victim but it's sad.

Tulips

Exhaustion
 

is exactly how I am feeling lately, exhausted from the pain and emotionally and mentally exhausted from trying to find out where it came from.

Tulips, does your blood work show autoimmune or immune problems?

Hello

Well my Sed rate is always elevated but not alarmingly high. But that's non specific. So when thing ran other kinds of test against this all is normal. Like lupus. Sjogren. Etc..

Other then that iga, igg, iga and sub class ig2 is elevated
Plus my recent fecal test for gluten shows activity .
So...

Funny thing is the doctor ran the IG test but now is clueless to what to make of the elevations and that's just amazing to me.

Tulips

A hematologist can interperate those IG results. I had mine looked at by one but he said it was not elevated enough to be of concern and to have it tested in one year.

This is not unusual... many doctors can't evaluate tests perfectly.
One glaring thing they don't attend to is elevated MCV in a CBC differential test. Elevated MCV is a precursor to low B12 anemia, when the RBC is still normal. An alert doctor could spare his patients so much neuro grief by attending to this
warning sign. But they don't.

When I had my B12 run this month, my doctor pooh poohed oral B12 supplements. I told her... wanna bet? I tested out at the max the lab could read (1999). I was trying the new methyl B12 from Puritan's Pride... which worked splendidly for me.
My average B12 was in the 800's before. Since I am going to try metformin again...having a current B12 reading is important, since this drug depletes it.

These days it is really important to be an informed patient, and take control of YOUR own body when possible.