[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?????

[mrsD]

Sounds like a very life changing situation.

I wonder if you have been tested for Carcinoid syndrome?

You don't mention GI problems or wheezing which may be present.

http://www.carcinoid.com/patient/und...76890732734093

In regards to the vitamin D... are you using that D2 form from the RX version? Or D3...OTC. The RX version doesn't work well. I would get your lab results for the D so you can figure out the dose of D3 to take to bring you up.

Also did you get B12 run? Do you know those numbers? Don't accept "fine" or normal... and get those numbers too. Lab ranges in US are typically old and have "normal" where they should be "low".... You should have at least a reading of 400 (in US units) or more.

MS type symptoms occur in people very low in B12. I'd get this done ASAP, because if it continues the damage may become permanent.

[JB63]

Hello,

Scarry symptoms. I found the blood sugar swings very telling, like there is a strong endocrine influence going on. The sweet smelling urine? Has it been checked for acetone?

When you had your accident, did you sustain a head injury?

Injury to the lower spine can cause incontinence.

Hunger, the severe kind, seen in thyroid and diabetes, which you have had ruled out. When was your last blood work for these?

No wonder you are at your wits end.

I am a retired critical care/ED nurse manager.

[katieindixie]

I forgot to add so many things, but my brain works less every day so forgive me and yet, I can have hours of clarity that give me hope only to become a mumbling idiot again with nothing we can figure out as triggers.

Blood sugars are normal and A1c normal. had a history of three pancreatitis episodes where of course they accused me of being an alcoholic because they could find no reason for it. Thyroid tests over and over for two years all normal.

I have bloating and go from diarrhea to constipation to normal daily stools.... I have gastric issues, but being the RN and wonderful self diagnoser I am I attributed those to maybe IBS so never mentioned them to my neuro until yesterday. Celiac disease blood tests were negative.

also the bottom of my feet callous up in a couple weeks with this grotestque thick skin and i use one of those slice it off

all B vitamin levels done last month were normal. my new neuro ran over 100k in tests in the last month on me including ruling out adrenoleukodystrophy.

I am thirsty all the time, but have massive swallowing issues and a lot of times speech issues. before a vag hyst in 06 I had these periods that were beyond awful, bled so heavy I would be sick for the week before the period and the entire time I had my period.

If I go outside and the temperature is above 70 to 75 within fifteen minutes I can't walk and have issues talking or thinkiing, same thing if I try to take a warm to hot shower or bath, I have had to literally crawl out of the tub onto the floor because the warmth destroys my ability to use my muscles.

and I get at least two to three times a month clear mouth blisters and the entire mucosa layer in my mouth with sluff off and a red hot facial rash but it is not dermatologic a dermatologist saw it and said it was a systemic issue. When it happens I can feel the inside of me getting so hot and then my face gets hot and it gets bright red, and if you touch my face where it's red you can feel the heat.

I am so desperate for help to figure this out......

[katieindixie]

and shortness of breath with no explanation

[mrsD]

Shortness of breath+ episodic GI motility + flushing = Carcinoid.
If not carcinoid then a tumor secreting biogenic amines. (Ovary or Lung are the most common sites). Some patients with elevated serotonin develop mental instability which doctors point to as "all in the head", and ignore the serotonin possibility.

I'd get the tests done for this. There is a new blood test that is easier than the 24hr serotonin urine.

Chromogranin A (CgA)

Most people have Carcinoid for many years, before it is discovered.

Also I am unclear about the timing of your Copaxone treatment. But this drug is known for causing pancreatitis.

And I cannot emphasize this enough... it happens here frequently.
Get your B12 numbers from your test. Don't accept "normal" because the ranges used today are out of date. If your test page does not flag 200 as low (or anything below 400), which it won't, you are living with a B12 deficiency and thinking you are normal. When B12 is low in the serum, it cannot transfer to the spinal cord either. This results in combined degeneration of the spinal cord, which mimics MS.

You may have more than one thing going on. So keep that in mind.

[katieindixie]

Do you know what it feels like for the first time in three years to have HOPE? Thank you for some hope!!!! I copied this, my neuro is great, he said he will run any test I want and re run them. Will go now and check my B vitamin results!!!!

Originally Posted by mrsD

Shortness of breath+ episodic GI motility + flushing = Carcinoid.
If not carcinoid then a tumor secreting biogenic amines. (Ovary or Lung are the most common sites). Some patients with elevated serotonin develop mental instability which doctors point to as "all in the head", and ignore the serotonin possibility.

I'd get the tests done for this. There is a new blood test that is easier than the 24hr serotonin urine.

Chromogranin A (CgA)

Most people have Carcinoid for many years, before it is discovered.

Also I am unclear about the timing of your Copaxone treatment. But this drug is known for causing pancreatitis.

And I cannot emphasize this enough... it happens here frequently.
Get your B12 numbers from your test. Don't accept "normal" because the ranges used today are out of date. If your test page does not flag 200 as low (or anything below 400), which it won't, you are living with a B12 deficiency and thinking you are normal. When B12 is low in the serum, it cannot transfer to the spinal cord either. This results in combined degeneration of the spinal cord, which mimics MS.

You may have more than one thing going on. So keep that in mind.

[katieindixie]

recent lab tests:

Vit D 25 hydroxy 27.3
vit B12 625
IGG immunoglobulin 631 (low) could be the copaxone though I think

Gamma 0.70 Low

homocysteine 9.3 which is normal
NMO-IgG negative
thyroglobulin antibiody <20 so normal
paraneoplastic autoantibodies all negative
HTLV-I/II ab screen negative
thyroglobulin tumor marker 4.2 (normal)
Gliadin <10.0 normal
oligoclonal banding 0 so normal
myelin basic protein 0.60 so normal

spinal tap normal except for IgG which was 740 and low
vdrl csf negative

mri brain 5 lesionsand unchanged since 8/10

thyroid functioni tests all normal
liver elevated and kidney high output of protein(which I have had since childhood and no cause ever found)

having polyphria (spelling?)testing done tomorrow

for the carcinoid - I have called my MD who is going to look at the tests for it and see if I can get it tomorrow when I have the blood drawn for the above one. He said it was usually dry flushing which I do have at times, but mostly it's massive sweating (only when exposed to temperatures above 70 degrees)

I also have a pounding heart at times and a racing pulse.

[mrsD]

So the B12 is in the normal range.

Keep an eye on it...as it might be going down, from a higher number. Some drugs do this, and the most common are the acid blocking drugs used for GERD.
They block the absorption of B12 from food, which is acid dependent.

The low D.... were you tested for sarcoidosis? Before raising your D you need to ask the doctor for this. I believe an ACE test is done.

If that is negative, then raising the D will help. The general rule now is 1000IU D3 daily for every 10 points you need to raise.
You are just about at 30, so to reach 50 (the lowest normal), you would need 2000IU D3 daily. This is more useful than the RX they give you. But for people with sarcoid...this is not indicated. The link to Vit D and sarcoid suggests keeping D low.

You know if I were you I'd sit down and carefully make a chart of what you had BEFORE you fell from the horse.
And another chart for what came AFTER.

This might help separate things out if you have more than one issue. All the medications you were given also can contribute to depleted nutrients, and various side effects, like the pancreatitis, etc.

I hope you find some answers soon! It must be horrible getting thru the day, now, for you.

[katieindixie]

I have not been tested for sarcoid! So that's one to add to my list! I wanted to ask you, you are so knowledgeable and for the first time in sooo long I have hope, we have been looking and looking and looking ourselves for the last few days. Have you ever heard of something called chiari ? we are also looking for stuff that mimics MS. My head is swimming with reading, but hoping to keep moving forward and keep looking!!!! Thank you so much!

Originally Posted by mrsD

So the B12 is in the normal range.

Keep an eye on it...as it might be going down, from a higher number. Some drugs do this, and the most common are the acid blocking drugs used for GERD.
They block the absorption of B12 from food, which is acid dependent.

The low D.... were you tested for sarcoidosis? Before raising your D you need to ask the doctor for this. I believe an ACE test is done.

If that is negative, then raising the D will help. The general rule now is 1000IU D3 daily for every 10 points you need to raise.
You are just about at 30, so to reach 50 (the lowest normal), you would need 2000IU D3 daily. This is more useful than the RX they give you. But for people with sarcoid...this is not indicated. The link to Vit D and sarcoid suggests keeping D low.

You know if I were you I'd sit down and carefully make a chart of what you had BEFORE you fell from the horse.
And another chart for what came AFTER.

This might help separate things out if you have more than one issue. All the medications you were given also can contribute to depleted nutrients, and various side effects, like the pancreatitis, etc.

I hope you find some answers soon! It must be horrible getting thru the day, now, for you.