frustrated with symptoms

[tishlovesjesus]

Hi all. I am 43, new to WA. I have had (self daignosed) tic douloureaux since my 20's. I have also had what I thought was poor circulation most of my adult life and recently discovered it was Raynauds.

I developed numness and tingling in my hands and feet which occurred at random times having nothing to do with circulation nor cold that had me worried. I also had progressively weakening of my right arm along with spasms and electrical "zingers" all over my head.

This brought me to the ER where an MRI was done and I was told I had 2 small lesions deep in the left hemisphere but they could not possibly be causing my symptoms. The ER Dr. said I had radiculopathy and a bulging disc at c5-6. After a week of decadron, my symptoms exploded, occuring on both sides but randomly and intermittently over the past 4 years.

I have lost my balance, fell down stairs 3 times, constantly cough and choke on my own secretions, have off/on blurry and double vision, huge muscle spasms, deep muscle aches, tons of vibrating sensations, creepy crawly feelings, ice cold stabbing pains, poking or being touched when nobody is there, bending of the neck causing vibrating sensations in my sacral area, extreme fatigue, and occasional urinary feelings like I cant go or it just dribbles slowly like an old lady!

I have had about 6 brain MRIs, VEP, EMG, LPs. The only thing that has shown up is the original 2 small lesions. Everything else is negative. I feel like I am going crazy and have since stopped going to the Dr. for every little thing since nobody is diagnosing me with anything and I think they think I am a hypochondriac.

To make matters worse, I am a neurology RN so one Dr actually thinks I have a psyche disorder where I think I have everything I come across! It is so infuriating. I am just documenting everything now so when I finally get bad I can say I TOLD YOU SO!!!

I know something is wrong. I tried to get life insurance the first year this all happened and disability insurance because I thought for sure I had MS. I was denied both soley on the fact of my symptoms and all the tests that had been run. I just want to know what is wrong with me.

For the most part I am very healthy, run triathlons, work out 3-5 days a week, do yoga, and eat right, healthy weight and size, and feel great most of the time. I get bad when I am stressed, which is not much because I am very easy going; maybe a couple of times a year. The worse it gets is so bad I cannot raise my right arm or do my buttons or turn my locker combo, but I find ways to get around the weakness. It is the dropsies that i hate. The other symptoms are just a nuisance that I have learned to live with. I have seen 2 neurologists and 1 MS dr. But noone has diagnosed me.That is my story.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Fed Up]

I read a post here, but am fairly new and not too sure how to navigate around. But, I read that one should see a neuro-psychologist. Which is, exactly what I am doing and suggest you do the same.

It sounds like your healthy regime is keeping the symptoms away.

Have they done a spinal yet?
Have they done MRI's of your spine?

Some docs, simply don't know what to do. In my experience, I've had the same primary for over 15 years..I so Thank God for that..my primary 'understands' and he will order, what they won't, if necessary. Plus, 5 yr ago, my primary came down with a similar auto-immune.

My experience, at my provider is: All the M.D.'s I've had for many years, "Get It." My physical medicine doc, said, "It could be cerebral MS!" However, it will take a neuro doc, in my system to say, "It is M.S.!"

Get yourself 'established' with specialist's and just keep going. Don't give up.

It is most frustrating. Request to see specialists. If your hand hurts, ask to see a hand specialist. If your back, ortho; it is OK to rule out any other disease.

As, a nurse in neuro, you probably see this all the time and fear it; you really need to stop diagnosing yourself. There are tests, as well..EMG EEG, etc. Until they do 'spinal' mri's; oh, did they do a cervical scan with the brain MRI?

It is frustrating, however, my Doc told me, next time I go blind or suddenly collapse..call 911.

I would keep going to your M.D. to document this. Go in while the symptoms are active, as it is most difficult for me to, because I take a pain pill or something for it and usually go to bed. Which is not sage advace, to do.

Keep documenting, mostly, keep talking and I've read a bunch here...I am sure, you will get a clue of what to do. Many here, know more than the docs, it seems.

Sorry you, as a health care worker, gave your all and now that you, NEED, taking care of, are not being. So Sorry. But, the good news is, so far, you've had no change. Probably due to your diet/exercise routines.

Oddly, I would describe the "pins and needles" feeling, as 'vibrating' as well. FedUp

[tishlovesjesus]

Tests

Yes, I have had MRI of neck and spine. No lesions. I have had 2 spinal taps or lumbar punctures. What seems to be a bigger problem is that the area I have moved to has the highest ms population in the United States! It has been over diagnosed here so now drs are trying not to diagnose it as much. It is speculated that it has something to do with the nuclear plant. I have aso had my share of auto immune issues such as high inflammatory markers in my blood for chrohns, extreme dry eye sjorgrens, alopecia capitus, and joint pain that comes and goes. My left hip has been inflamed on several occasions with fluid showing up on MRI for no reason. My bowels are another whole issue. My primary is at a loss. My ms dr won't diagnose me with anything. Yet EVERY SINGLE SYMPTOM I HAVE POINTS RIGHT TO MS!!! Still very frustrated...

[tishlovesjesus]

Emotional and over sensitive

I also am overly emotional now. My senses seem to be heightened at times. My hearing is very acute and my vision is strange in that I sometimes don't filter out the stuff I'm supposed to like my nose and lashes and single strands of hair sometimes are out of focus and appear to be huge. My teeth also randomly get numb and sensitive sometimes to the point where even breathing in through my mouth drives me crazy like the nerve is exposed. I feel like strings are being pulled tight under the skin on my face and feel like there is always a strand of hair tickling me somewhere but NOTHING is there!

I hate telling my husband or showing him the spasms because all he says is, "oh, that happens to me all the time" I swear he has MS couvades! Lol he says I am overly sensitive to touch and that everything hurts me. I startle super easy and am extremely jumpy now. I have been to specialists like my eye dr who said my optic nerve looked inflamed and who put puntal plugs in for my dry eye, skin dr for the bald spot on my scalp, physical therapist for my hip and balance issues, headache dr for the brain lesions, dentist for the tooth pain and sensitive teeth,

I had a rehab swallow study by speech therapist when I kept choking on food and saliva. Geez, what more does a dr need to see and for how many stinking years? But because my symptoms resolve by the time I go for my appt, they don't see the weakness, the clumsiness, and most of my other things except visual deficits which remain and get worse and my balance especially with my eyes closed. So what now?

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **