Hi Artie. It sounds like a MS laundry list to me, but what do I know.

Let us know what your Neuro has to say and in the meantime, take a deep breath and relax a little.

Take care..

Thanks, it's just so frustrating that all the blood tests they have run have come back normal (except my testosterone level, very high for a girl, about low average for a guy )

Hopefully it will be a bad day when I go in so they can see. I just have been hiding it for so many years and about 2.5 yrs ago it seemed to go away for about 18 months...it was so lovely, then I woke up one day to this and it's just scary how FAST it has progressed in the last 6 months.

To top it off I am in the VA health care system. I'm not sure if we should bite the bullet and pay out of pocket and see if a specialist will see me w/o a referral. What is so bad with the VA is an appointment takes about 5 months for a GP, 3 more for a specialist and anything in between, you get to go to emergency.

grr

Hi and welcome artiemouse I like your doggie pic. very cute!

The road to an MS diagnosis can be one full of frustrations and aggrevations. As I tell loads of folks, if you feel your current MD is being dismissive or simply isnt hearing you, its time to change MDs.

There are tons of MS centers. NMSS.ORG has a good list. You said you are going to see a neuro. Tell him that if he doesnt think he can fully diagnose you, to please refer you to one of those clinics.

I hope you get answers.

Welcome-this is a great place for info, laughs, and hugs.
I was dxd with fibro in 85...fibro mimics lots of MS sxs. I was told by my orthopaedist in 2000 to watch out for MS...he and his collegues were seeing lots of fibro patients go into MS.
Personally I believe that Fibro is a precurser to MS...they never did MRIs of my brain when I had fibro, so who's to know if I already had lesions?
Keep getting informed, so that when you go to a doc you have a well-informed list of questions for him/her.
good luck! I took me over 3 years after first seeing a neuro before I got a dx. Don't give up. If you feel that you're right, keep on fighting!

Thank you, I'll print out that list and bring it with me. It's the VA, but I'll see if I am not satisfied with them if they will send me to a specialist, or at least a referal if I have to pay out of pocket.

George (my doggie) is awsome. When I started tipping over with the cane that was given to me by my GP for the dizzy spells, he stepped up and helped. He is MUCH more fun than a walker and more reliable (if I start to tip he either supports or pulls in the opposite direction) and he seems to be alerting before I have a fatigue wave and allows me to get to a safe spot to collapse in. The other day I went to get up (I thought I was good enough to go), he crawled into my lap and made his head weigh 30 lbs and gave me the "look". He was right, I had a second, worse, wave about 5 minutes later.

Hi Artiemouse. If you dont mind, what was your testosterone level?
Im the opposite and inject it every week. With a high level and good protein intake/low sodium intake, you'd have the ability to get quite strong.
Im a male and keep mine around 800. Kind of high end of range but it helps.. alot.

I had a great reply.....and then my browser suddenly closed....

I believe I was within 10 of 700, don't remember if it was above or below. My body type when I was younger was mesomorph, well-defined muscles and large bones. When I was in my prime I weighed 165. I'm 5' on a good day. I was clinically obese, my measurements were 35-24-39, my thighs were 27" (a ***** to get a good pair of jeans, the waist was always at least 10" too big) I could bench 120 or 140. One day I tried to see how much I could push w/my legs (laying on my back, I don't remember which machine) I think I got to 340.

I was a rider, did eventing, jumping, etc. I would jump courses at my home barn, bareback, 4'6"-5'3", it's all in the legs lol

To this day I am still very firm in my thighs, calfs, arms, but my middle is squishy. Part of the problem I have is that my muscles contract but don't relax. My shoulders and neck are exceedingly firm, almost no give in them on a bad day. I think that's why they went the fibro route with my pain, since the pain is mostly in my muscles (and I still have a lot of them)

Hello artiemouse! I like that name too!

I was reading some of these posts from you and wonder....
Your profile says "female" and you have stated that you
have elevated testosterone?

Have you been evaluated for endocrine problems?
Two things come to mind for me..

1) PCOS polycystic ovary syndrome

2) congential adrenal hyperplasia

I assume you had a brain MRI and nothing showed up as an irregularity in the pituitary?

There are some things you can do to help your muscles out.
Sometimes it is just low magnesium levels, that cause that failure to relax. Many people in US are low in magnesium because they don't eat whole foods commonly which provide this electrolyte.

Here is my magnesium thread with more information:
http://neurotalk.psychcentral.com/thread1138.html

There are advantages to elevated testosterone in females.
They include increased muscle strength, and stamina, improved bone density and a responsive libido.

But the downside can be facial hair, acne problems due to increased oil.
There is an over the counter supplement that can reduce the expression of excess androgens in females with PCOS...
It is called d-chiro inositol and it is used for improving fertility in women with elevated androgens. It can improve skin and reduce facial hair as well.

Let me know if you want to know more about this.

Yep, I finally had my dr do a FULL panel and they ran EVERYTHING. The only thing out of wack was the testosterone. Everything else was "fine" though I did have a high normal for my thyroid.

All my girl parts are good except for the vulvar vestibulitis (another crappy disease).

They checked my magnesium levels (everything was good), all my hormones are within standard, adrenals are good (I don't believe it, but tests don't lie)

I am a furry bastard, but I'm southern Italian and that's in my genes, laser hair removal is WONDERFUL!!!

I'm careful with my diet, organic most of the way, all my meat is free range, organic, grazers only eat grass and alfalfa, birds do the bird thing (no hormones, vegie diet), ... you know the drill

Thank you for all the suggestions. I have nagged my poor GP till she finally decided to get me a consult with a neurologist, only took about 3 visits and multiple phone calls in a 6 month period.

p.s. "artiemouse" comes from my middle name. my niece couldn't pronounce my middle name Artemis (which I use with family), and it came out as Artiemouse. It stuck

Hi Sally,

Well here is what happened at the neuro. His first statement was asking if I in the middle of litigation or trying to get disability, stupid me said "yes, but that's not the reason i am here. That i am worried about what is happening to me". I think it was then that he dismissed me as a faker, user, whatever else you want to call it. He would not look at my paper (since I'm having issues remembering I listed my symptoms, when they started, etc); he sneared at George and asked why did I think I need him. The doctor asked for him to be taken out of the room for the exam, so my hubby left with him. If I had been thinking clearly I would have had them wait in the hall with the door open.

He asked me my symptoms and I started listing them. He cut me off and said I was referred to him because of the dizziness. I said I though he would want the whole time line that led up to it and other things that were happening. He said no, just tell me when the dizziness started. I was able to get in the weird sleep stuff and memory & speech issues (though he waved his hand and cut me off). He then did the basic 5 min neuro tests (i had tremors in my hands, eyes jumped during the light test and i kept rocking back when i stood w/my knees together i rocked back). He said that if he didn't know my symptoms that i listed, that i was perfectly fine, nothing wrong in my neuro test. He said my symptoms (the ones he allowed me to say) do not match any neurological disease that he knows about and he doesn't think i have a neurological problem, but that it's all psych. Basically that I am a big faker, that I'm making it up to get the $$ from SSI and to be able to take my "pet" with me.

He is ordering an MRI, dizzy clinic and the cognitive testing. Basically he dismissed me from the start and is only doing tests (i think) to cover his ***. With the VA this should take about 6 months.. I'm ******, like i never want to be self sufficient, that I WANT to give up all my hobbies, be forced to sell my horse because I can't safely work her, never be able to ride again or to feel safe driving, etc