many symptoms, no dx - no lesions
 

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..:hug:

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 :Scratch-Head: )

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. :hug:

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.

Symptoms
 

I presented with a numbish, tingling sensation that crept up the whole right side of my body. Very distressing to say the least. My doc would have bet me $100 that I had MS based on my symptoms and history....then I had an MRI and nothing! All that really means is they can not give a definate diagnosis without those lesions! Anyway, doc said "Oh well, lets just see what happens since you are feeling better" She had me return in six months for a follow up and I told her I was feeling much better but had a new little funny sensation over my top lip.....burning, tingling and numbish. Well, she opted for another MRI scan and (in that six month time span AND actually feeling BETTER) I had lots of lesions on the new MRI. Now they show up after 12 years of wierd medical issues that know one could explain.....I guess I finally nailed the right time and the right place with the right doc in the right amount of disease activity. Whatever it is...it is SOMETHING so don't allow yourself to feel crazy....just stay proactive and write down everything you experience on a daily basis so your doctor can actively see the patterns.
Let him see a normal week for you.
V.A. doesn't have a specialist for you? I was a military wife for 20 years and I can say I didn't always care for the medical care....hope you can get some help soon. Big Hugs

I'm in lurve with your doggy George. :)

Thanks Sally, he's the main reason I get out of the house. Everyone should have a George! :trampoline: