Re: misdiagnosed

[Guest guest]

,

Please let us know how the chiropractor works out and if you have the

acupuncture done?

I have thought about this myself. My rheuma touched all the spots that were

supposed to be

tender for Fibro and said she was pretty positive I had it but was not very

informative either.

She said she could recommend a pain center...

Joy

> Here is another horror story regarding my EX rheumy. 6-8 months before I

had my carpal tunnel syndrome surgery last year I had been complaining to my

rheumy about severe wrist pain. That was completely dismissed. I had

visible swelling and redness on several joints on my fingers and toes. I

also had really bad neck/back pain that was also dismissed. 2 years earlier

I had sciatica that went untreated because I was living abroad. When I

mentioned it to my rheumy that was also ignored. Gradually over the next

6-8 months that pain radiated up to my elbow and then to my shoulder. It

was so unbearable I could hardly dress myself. I also had severe fatigue

(which turned out to be narcolepsy). My rheumy claimed I had fibromyalgia

and that it was to be treated with neurontin. When I cried to her at my

next appt. because I was overcome with pain she told me very rudely that

fibro. is very difficult to treat and to learn to live with it. Later I had

an EMG done and was told

> that I needed carpal tunnel surgery immediately or I would lose function

of my hand. The rheumy didn't comment on ignoring my pains for so long.

That should have been my first indication that she was shadey.

>

> The reason I am bringing this up is that I saw a chiropractor today. He

is going to treat me for my recent car wreck. The first thing he told me

was how painful psoriatic arthritis could be. He mentioned that he read

some book that a bunch of dr.'s wrote regarding treating PA (and other

autoimmune diseases) with this special vitamin regimine. He is getting the

info for me tomorrow. I will be sure to let everyone know. He also said

that vitamin B shots are good for energy.

>

> After the examination he told me that I have alot of problems with the

sciatic region. I hadn't even told him that I suffered from sciatica

before. He told me that he didn't think I had fibromyalgia. He examined

the fibromyalgia tender spots and the only ones that hurt were in the

sciatic region. I honestly think my rheumy made the diagnosis because of

the wrist/elbow pain associated w/ my carpal tunnel. I think the back pain

is from the arthritis. He agreed with my hypothesis. He gave me a SI belt

to help with the lower back pain. It is a little over 2 " wide and you put

it around your lower back very tightly to reduce the pressure on the sciatic

nerve. I am supposed to wear it all the time. I think now that I know what

is causing all of my back pain it can be properly treated and not dismissed

as something else. He also said I should find a new rheumy. He said that

if I am still in alot of pain after I finish the physical therapy that he

can get me into a pain ma

> nagement program.

>

> I was surprised to find out that my GP performs acupuncture in his office.

He told me he uses it to treat arthritis so I am pretty excited about it. I

think that combined with the vitamins should help me find some relief. I

have tried all the meds. Now I am ready to try something that won't hurt

me. I know I'll still need the Enbrel but at least my pain can be better

controlled.

>

> take care,

>

>

>

>

>

[Guest guest]

Joy,

Will do. Right now I am phys. therapy only. We are using the TENS

(electrical stimulus on the muscles), ice packs rather than heat since I

sprained my back from the car wreck and heat causes more swelling due to an

increase of circulation, and traction on my neck. I am also using the SI

belt to ease the pressure on my sciatic nerve. I can't tell if that is

helping yet. I have only gone for 2 days. So far I feel better for about

an hour and then my pain comes rushing back. An hour is better than nothing

though! We will keep this up for another week to try to lessen the pain

before I start the stretches/exercises and manipulations. I am going daily

so I assume it is going to help more.

My first session of acupuncture is Wednesday. I'll post on that too. My

dr. did mention that if the disease is long standing and complicated it

might take longer to treat. The fact he has sucessfully treated others with

arthritis makes me hopeful.

I went to a pain management clinic before and it wasn't very helpful.

Behavoir modification and relaxation techniques are supposed to be good. My

problem is that I get distracted easily and don't like to sit quietly still

for too long. That and my dog wouldn't leave me alone long enough to try!

I have bad luck with dr.s though so that could have been the cause too. The

chiropractor said he could speak with my GP to get me into a pain management

clinic if this doesn't work out.

My chiropractor gave me the regimine to treat fibromyalgia and rheumatoid

arthritis. He gave me the info for fibro. even though he doesn't think I

have it since it is supposed to help with energy, morning stiffness and

something about how the nerves perceive pain. He is looking for the info.

specifically designed for psoriatic arthritis and will get back to me on it.

He included the info. on RA since it involves inflammation and PA is treated

with the same drugs as RA. If anyone wants the information they can email

me. It is several pages long so I'll just scan it into my computer. Or,

maybe Ron could set it up on the website?

take care,

[Guest guest]

Hi a,

I have been on a few CMT lists since 1997. I have read about CMT being

misdiagnosed a lot. Sometimes the person is told they have CMT and they don't

and sometimes it goes the other way.

Don't be afraid to get a second and third opinion. If your husband's father is

available it would be interesting if they could see a neurologist together. You

would get more than 5 minutes with the doctor that is for sure.

In a message dated 7/22/2008 4:08:16 P.M. Pacific Daylight Time,

vieira123@... writes:

i was wondering if anyone out there that has CMT was ever

misdiagnosed with ALS?