[katieindixie]

I am desperate for answers...

I am 45 year old female who was generally healthy, working full time as a cvicu rn, raising a family, riding and showing horses, being very independent until I was thrown from a horse in 5/09. I suffered from several insufficiency fractures and a broken sacrum, my ortho said in 45 days I'd be fine, but within weeks I started feeling electrical shocks in my brain and throughout my body...I complained to my doctor who said maybe I was depressed (yeah right) so I got a new dr who sent me to a rheumatologist who said I had fibromyalgia, I went back to him several times saying I was continuing to get weaker and had new issues, not being able to feel my feet or hands, constant pins and needles, ice cold hands and feet that are very painful, long periods of time where I would be very confused and felt detached from my brain, incontinence, insomnia, exhaustion until eventually I quit work. I continued to decline until in July of 2010 I was at a world championship horse show in Ohio and woke up one day having severe eyeball pain right in behind my right eye, within 12 hours I had lost peripheral vision so the ER there said optic neuritis and gave me steroids and my husband flew out to get me. Here at home the MRI showed one lesion (another stronger one showed 5 separate in that area) so I was diagnosed with MS. I was critically low on Vitamin D, and even with supplements I stay on the low side of the range per labs. I was Started on Betaserone and felt worse than ever. I complained to the DR that I felt worse and worse and he didn't want to hear it about it so I changed neuros who put me on capoxone. I continued to still feel bad, mass confusion, eye pain intermittently, horrible muscle spasms, electrical shocks, worsening weakness and eye sight that literally changes every day. Finally after six months of that dr not listening to me I saw a new neuro in May who isn't even sure I have MS and is at a loss as to what is wrong with me. I stopped the copaxone. Have been tested for adrenoleukodystropy, lupus which was negative and my spinal tap was negative so he doesn't think I have ms.

symptoms:
childhood: always had high protein in my urine
easy bruising, and even as a child was very tired and in my teens would go to bed at 8 pm

20s to 30s
had several periods where my brain would feel like it hurt and I'd be sick, nauseated, vomiting every time I moved and massive head pain and my entire body would hurt, lab tests were always negative and the doctors would say see a counselor.....which really infuriated me....as a nurse I knew something was wrong.
I had a lap chole not for gallstones but because of severe abdominal pain which on a hida scan every time my gallbladder contracted I would cry out in pain. I've also had a hyst but have my ovaries.

now fast forward: here is my complete list of syptoms:

100% heat intolerant. anything above 70 degrees and I start flushing, sweating like crazy and get very confused, weak, muscle weakness and can be sick for days if exposed to alot of heat (difficult living in the south).

Hands and feet are very painful, always pins and needles, feel like I'm wearing a glove, can't feel the bottom of my feet they are ice cold all the time and more and more the pain is increasing.

Urine: incontinent at times and it is frothy and smells sickeningly sweet, still high in protein.

I am hungry all the time, starved for carbohydrates and have had a 40 lb weight gain over the last few years. My blood sugar can range from 180 down to 50's and once I hit the 120's and drop from there I feel sicker than ever and take glucose tabs to bring it back up.

I have a redness that happens at least daily on my face, it is not pimples or rashy type just red and my face will feel like it's on fire even if someone touches my face they feel the heat.

Intermittent eye pain and changing eye sight daily. It is never the same.

Muscle weakness, right greater than left.

exhausted all the time

confusion

I continue every day to become more and more disabled and weaker. They are trying to get me into the mayo clinic but so far no luck. I've been tested for adrenal gland issues and it was negative, thryoid is good. I'm desperate for help. I've searched for hours and hours on diseases that mimic ms and severe heat intolerance. No help so far.........any ideas?????

[Kitty]

Hi Katie and welcome to NeuroTalk. I'm so sorry to hear of your ordeals but you've come to the right place. There are many very caring and knowledgeable folks here. I'm sure some of them will come along shortly to give you their opinions.

Your symptoms do sound like MS....but so many other conditions mimic MS that it takes quite a while sometimes to narrow it down. The doctors try to eliminate as many as they can before deciding on a diagnosis. The waiting can be maddening.

You're not alone.

[mrsD]

If you are losing alot of protein in the urine, I think you should see a kidney specialist. Can't fool around with that!

[Jules A]

I wish I knew what to tell you. It does sound like MS to me even with the other components that could be something in addition to MS. Good luck and please keep us posted.

[carebear01]

All of these symptoms sound horrible!! I feel that I have no right complaining about mine. I too work in a hospital and my first thought was adrenal issues...but you said that was ruled out. My only other thought is advanced lymes. Have you been tested for that? Did you have a spinal? I'm sure you don't want everyone at work knowing what is going on, but you have some excellent resources where you are. It is frustrating. Good luck to you.

[NurseNancy]

oh my gosh katie. your situation sounds awful.

don't give up. you're your own best advocate. i know how hard it is to keep pushing when you don't feel well.

i had a thought that maybe you should check with an endocrinologist and see a urologist.

researching who is the best diagnostician in town might yield results.

just compile all your tests, maybe in a notebook, to show a new dr.

i worked NICU for 35 yrs until i was forced to retire with MS.
i really grieved for my job, my pts and my career.

please hang in there. you've found a great place for support. keep us posted.

[doydie]

A lot of your symptoms sound like diabetes. Have you applied for disability?

[SallyC]

Welcome Katie..