Many MS centers will give the dx of MS even in the abscense of lesions, but based upon history, and symptoms.

its a scary time, and I wish you luck, and peace.

Mr Neuro calls a Pt that shows every aspect of MS, minus the presence of prominent lesions~ benign MS.

I have been dx'd with fibro, but in the past year I have gone rapidly downhill. My current general doc says I'm fine, I'm seeing a neuro on thrus, any ideas? tips? I have made a list for the neuro that has symptoms that has come from journaling just so I can remember all the *(#$^&@ that happens in my day. I can't believe that I have been complaining about all of this for over a year and my general dr says I'm fine. I don't feel fine.

My current symptoms include (but are not limited to) Leaving the bullets in for easier reading:
• Fatigue, Muscle pain (Cannot carry a backpack due to muscle tenderness/pain in the shoulder upper back area), Muscle weakness (Stumbling when walking, Not having the strength I used to, can’t lift a saddle onto the back of a horse, Easily winded)
• Eyes twitching when looking up or to the side, Tremors (in hands & random large muscle groups)
• Flushing in face, Nausea, Feeling like I am swallowing around something, Sense of taste is different (Food taste blander, No longer like favorite foods)
• Constipation, Abdominal swelling, Weight gain
• Handwriting randomly changes, Can’t use a pencil sharpener/screwdriver without pain and swelling of hands the next day. (Can’t carry a loaded grocery bag without pain in hands from the plastic bag)
• Language (Losing works, almost stuttering when I am trying to say something as I lose the word I wanted to use, In the middle of speaking forget what I was talking about or what I was going to say, Unable to remember common names, Speech is starting to slur, I used to have a very clear speaking voice and that is changing), Taking longer to compose sentences both in speech and in writing, Unable to remember what I did earlier in the day if I didn’t write it down ( This includes phone calls, what I ate, what I am suppose to be doing at different times of the day)
• Vertigo – constant feel of motion no matter what I am doing,
• Falling backwards while standing if I am not leaning on anything
• Constantly feeling like I have to readjust myself to stay upright
• Cannot walk a straight line in an open space
• Walk “point-to-point” always having something in touching distance
• Need assistance when walking more than 10’ in an open space
• Cannot do a quick walk through a grocery store without a cart to help with balance
• Feel like I am falling over when I am sitting still and proper in a chair without arms and I’m not leaning against anything
• Cannot turn my head while driving without feeling like I am drifting in my lane/into another lane
• Cannot bend over without feeling like I will fall over, or I am falling over
• Need assistance to get back up from on the ground, cannot stand without assistance without tipping or feeling like I am falling
• Can no longer ride my horse unassisted (ground help or lunge line, I have been riding for 35 yrs)
o Fell of mounting block, now need assistance getting on and getting off
o Cannot ride anything faster than a good walk
o Cannot circle the horse without feeling like I am falling into the circle or still circling when the horse is moving forward
o Feel like I am moving in one space, while the horse is moving in another, timing is completely off, feel disjointed
• Sleep disturbances
o Feeling of being paralyzed
o Feeling of imminent attack or dread
o Pins and needle feeling throughout all of my body
o Restless sleep due to pain waking me up
o Unable to sleep the night through due to pain
• Zoning out
o While awake feeling the “pins-and-needles” feeling
o Seeing people that do not exist out of the corner of my eye
o Feeling like I am dreaming when I am awake
• “Attacks” or “Episodes”
o Start with my dog whining at me
o In about 15-30 minutes later I become flushed
o Huge feeling of being dislocated from my space
o Speech becomes slurred
o Extreme spinning
o Unable to keep my eyes open
o Must find a place to rest and sleep
Sleep lasts anywhere from 45 minutes to 3 hours
• Numbness and/or tingling in random parts of my body
o Typically happening in my lips, face, soles of my feet
• Skin/parts of my body feeling “thick” or numb
• Can feel my pulse
• Sometimes have a loud ringing noise in my ears
• Can hear my pulse in my ears (like a rushing water or wind noise, seashell held up to my ear type noise)

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.

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