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Old 12-30-2009, 08:05 PM   #1
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Unhappy Mysterious illness, possible autoimmune

So I've been getting progressively more ill for over a year. I am constantly sick, but I have recurring episodes where I am completely unable to function and need help to perform everyday tasks.

My main symptoms are pain (pretty much every type there is...stabbing, throbbing, aching, gnawing, etc.), tingling and numbness in arms and legs off and on, fever that comes and goes and can get as high as 101. Several fainting episodes, collapses where I am too weak to sit up or stand...often for hours at a time, trouble urinating and I did have one accident recently. My arms and legs have both become very weak and I seem to have some muscle wasting now. I get so weak and painful I have a hard time breathing a lot of days. I also have multiple different types of rashes I get as well as chronic diarrhea. Oh and kidney stones

So far these are the tests we've done:
CK: low
ESR: slightly elevated
White blood cells: slightly low
ANA: Negative, but anti-histone positive three times now
Vitamin D: 18, but treated with prescription strength now
Urine: slightly elevated protein, passed kidney stones
brain MRI: normal
EKG: normal
Halt monitor: normal
Echo: Mitral valve prolapse, mild
abdominal CT (after kidney stones): swollen kidney, small nodule on lung, diverticulums, and elarged messenteric lymph nodes
EEG: still awaiting results
Chest x-ray: still awaiting results
blood cultures: still awaiting results

I've seen multiple doctors for this and in the last month have had three ER visits when I collapse or faint and cannot care for myself. This is getting incredibly frustrating. My doctor is now considering sleep studies, a spinal tap, and the test where they stick needles in my muscles because I have bad arm reflexes.

I'm only 23 and terrified. I am afraid we may never figure this out. This has become debilitating and may soon face unemployment.

Anyone else ever go through something like this? Is there any chance this will ever get figured out?

Thanks ahead of time for any help
Liz

 
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Old 12-30-2009, 11:13 PM   #2
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Re: Mysterious illness, possible autoimmune

The test with the needles into arm muscles isn't as bad as it sounds, it is seriously uncomfortable and you do feel the needle stick initially. It's called an EMG, I had one last year on both hands and arms. The hand part was worse.

Have you had the blood test for Celiac Disease? It has many of the wide spread symptoms you describe and I think might be worth a simple blood test. http://www.nlm.nih.gov/medlineplus/ency/article/000233.htm

There are certainly other disorders, like the dysautonomias, (Postural Orthostatic Tachycardia Syndrome (POTS) or Neurally Mediated Hypotension) that fit some of your symptoms.

These probably only come to my mind first because I have them both - celiac and a dysautonomia. So take it with a grain of salt and my wishing you well.

Last edited by AuntieLeela; 12-30-2009 at 11:20 PM.

 
Old 12-31-2009, 11:58 AM   #3
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Re: Mysterious illness, possible autoimmune

I also suggest a celiac test. Also, has anyone checked your blood sugar. How are your electrolytes (potassium, sodium and calcium). Celiac disease can cause malabsorption of vitamins. Since your D is so low I wonder how other nutrients are being absorbed. I have celiac disease and had a positive biopsy even though my blood test came out almost not detecting the disease. I'm starting to not trust the blood test completely but if you get it done and it's positive then that answers alot of questions.

Beth

 
Old 12-31-2009, 09:26 PM   #4
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Re: Mysterious illness, possible autoimmune

Thank you both for your response. I have been looking into the Dysautonomia as every symptom of it fits 100% and the doc kind of hinted at it some as well, although like the Fibromyalgia I was diagnosed with the lack of treatment of the actual cause is frustrating.

I've read about the Celiac disease some and it certainly does seem like a strong possibility. I may ask to have that tested as well.

My blood sugar is considered pre-diabetic. Although I've been checking it regularly and as of lately it seems to have been staying more in the normal fasting range...usually just barely elevated.

I don't know my exact electrolytes, but I seem to dehydrate quickly and severely when I do, even with drinking water regularly, which I think caused the kidney stones for the most part.

And the vitamin D thing makes a lot of sense with the Celiac disease since I've been treating the deficiency for years with seemingly no improvement in it.

Thanks again for the suggestions, I'm definitely going to take that for the next step in my testing and see if anything shows there. I go back to the Rheumatologist next week and I'll ask him if we can do that test

Thanks!

 
Old 01-01-2010, 10:31 PM   #5
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Re: Mysterious illness, possible autoimmune

try a blood test for Gluten Allergy

 
Old 01-02-2010, 07:16 AM   #6
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Re: Mysterious illness, possible autoimmune

If you are dehydrated water may not be enough. Add gaterade (my doctor recommended that to me one time) and see if that helps. Water doesn't have potassiun etc which you lose when dehydrated.

 
Old 01-03-2010, 12:04 AM   #7
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Re: Mysterious illness, possible autoimmune

the postural orthostatic tachycardia syndrome that has been mentioned has symptoms of weakness, dizziness, heart racing. My son was diagnosed with POTS when he was 15. We made a trip to the Mayo Clinic, there are only two places in the country that do the testing for it. Mayo and Vanderbilt. We were told that a bout of shingles that he had a month prior damaged his nervouse system where his body could not regulate his blood pressure. So when he stood up the blood pooled in his legs and he get extremely dizzy and then when he layed down the room would spin and his heart raced. They treated him with blood pressure diuretic for about a year, they encouraged moderate exercise if he could handle it. And said that he would grow out of it because he was so young. He is 22 now and still has moments occasionally of weakness. He is a cyclist which helps with the exercise. Mayo was wonderful with him, I was so amazed how they made him feel like he was the only patient there. I hope this helps.

 
Old 01-03-2010, 06:08 PM   #8
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Re: Mysterious illness, possible autoimmune

Update:

Going to see the Rheumatologist on Friday, but may end up seeing my Primary before then. I have developed a number of large lumps on the lower left side of my back and a swelling on that side that extends 6-8 inches approximately and is raised considerably higher than the other side of my back. It is excrutiatingly painful, almost as painful as passing a kidney stone, but feels different. The pain extends from my back (which feels like muscles spasms) into my side and abdomen directly under my ribs.

I am also incredibly nauseated and have completely lost my appetite. I noted I've lost nearly twenty pounds in the last couple months with no dietary changes or exercise.

I feel like something is literally causing my body to wither away. I've been trying to keep myself as active as possible, but still am having muscle wasting.

I am praying my Rheumatologist has some ideas to help me.

and thanks again for all of your comments.

 
Old 01-03-2010, 07:23 PM   #9
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Re: Mysterious illness, possible autoimmune

If I were you I would contact my dr. first thing in the morning. I don't think it's a good idea to wait until Friday. I hope it turns out to be something easily diagnosed and treated. I have a 29 yr and 22 yr old, if either one of them had these same symptoms I would give them the same advice. Take care and go sooner than later.

 
Old 01-03-2010, 07:23 PM   #10
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Re: Mysterious illness, possible autoimmune

Quote:
Originally Posted by Lizardwoman85 View Post
I have developed a number of large lumps on the lower left side of my back and a swelling on that side that extends 6-8 inches approximately and is raised considerably higher than the other side of my back. It is excrutiatingly painful, almost as painful as passing a kidney stone, but feels different. The pain extends from my back (which feels like muscles spasms) into my side and abdomen directly under my ribs.
Uh oh, is it like a rash? With blistery bumps all through it? (bumps may not actually blister till 1 or 2 weeks)

This has an image of what shingles looks like on a back:
http://www.nlm.nih.gov/medlineplus/ency/imagepages/2942.htm

 
Old 01-03-2010, 11:33 PM   #11
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Re: Mysterious illness, possible autoimmune

Lizardwoman85 , go to the dr. if it is shingles the meds help with the pin and swelling. It will only get worse with time. Keep us posted.

 
Old 01-04-2010, 02:50 PM   #12
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Re: Mysterious illness, possible autoimmune

have you been tested for a gluten allergy?

 
Old 01-05-2010, 06:50 PM   #13
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Re: Mysterious illness, possible autoimmune

I went in to the ER yesterday because the pain in my side floored me. The doctor refused to feel the lumps on my back, which was rather annoying. The only rashes I have do not look raised like the shingles rashes and the lumps are very deep and larger than grapes. But anyway, they did another CT scan (hooray for more radiation exposure :/ ) and found some more kidney stones. However the stones are super tiny and I didn't have blood in my urine. They gave me morphine for the pain and sent me home with Vicodin, Toradol, and a muscle relaxer for the muscle spasms and are having me watch for stones to get analyzed.

I got a little bit of my appetite back today with help from getting the pain controlled a little better, but still really feeling unwell. I'm having terrible cramping in my bladder/pelvic area that comes in spells.

I do not know what to do. I feel like the doctors are not listening to me anymore. What do I do when the docs won't listen?

 
Old 01-23-2010, 08:49 AM   #14
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Re: Mysterious illness, possible autoimmune

The EMG would be a could to have done. The other possibility would be MG(myasenth gravis). The test could rule out or diagnosis you.

 
Old 02-24-2010, 08:04 PM   #15
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Re: Mysterious illness, possible autoimmune

Have you been checked for Lupus? Rashes are very common in Lupus and there is a 25% incidence of Fibromyalgia in Lupus patients. If you have not visited the Lupus board, I suggest you read the sticky posts at the top of the thread as there is some great info on the prevalence and coexistence of FMS and Lupus. I would at least mention the possibility to my Rheumatologist. He can do testing that may confirm.

 
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