Please Help - what is causing this?

[Sandpuff]

I just found this forum and thought I'd try posting here to see if anyone has any ideas on what could be causing my symptoms.

Nine years ago at age 25 started jerking so hard that I would occasionally fall down. The neuro at the emergency room mentioned MS. All tests were negative. Went to mayo and they diagnosed Spinal Myoclonus (their name for the jerking) with no known cause but possible autoimmune etiology.

Other symtpoms at the time:
fatigue
weakness in right leg
twitching in legs & hand
lots of other vague stuff

Doc at mayo ordered 5-day IV of solu-medrol. Now, nine years later I am being hit with extreme fatigue, occasional weakness in that leg again, chest pain (which I went to the doctor for because it was very disturbing and everything checked out fine), swollen glands.

The only thing that really bothers me is being so tired and feeling weak. I can live with the chest pain and twitching that happens when I overdo it. But a healthy, active 34-year old should not be so tired after going to watch a high school football game that she has to spend 2 days in bed to recover. So I am once again searching for an answer to what's causing this. After the last round of testing several years ago I swore I'd never go back to the doc unless I was dying, but here I go again.

My past history includes 2 bouts of mono and one unknown virus that I thought was going to kill me because my fever reached 105+ and I lost 15 pounds in a couple of weeks (I was 23 at the time). I've been wondering if that virus could have anything to do with this.

Thanks for listening!

[rose]

If I were you, I would want to make sure that undiagnosed and untreated B12 deficiency isn't adding to your problems.

B12 deficiency is one of the things that could cause all of that and/or many other problems. But it is extremely unlikely that it would be in that order.

Malabsorption can happen to anyone, and does occur in many, and a person with other autoimmune problems is even more likely to develop worsening and eventually severe malabsorption.

Please take a look at my developing website on this issue, because much of the medical reference material is extremely outdated and misleading or worse.

rose

http://roseannster.googlepages.com/home

[Sandpuff]

Thank you, Rose.

I will check this out. That is something I hadn't thought of and I appreciate your insight.

[rose]

You're welcome. :)

rose

[annelb]

You may want to also check the possibility of gluten sensitivity/celiac disease causing these problems. Gluten is the protein found in wheat, barley and rye and in some people this causes an autoimmune reaction. It can also cause malabsorption of nutrients leading to deficiency in many vitamins. Fatigue and other neurological problems are common symptoms. Actually there are about 250 symptoms that can be associated with GS/CD. Here is a short list of symptoms.

gas
recurring abdominal bloating and pain
chronic diarrhea
pale, foul-smelling, or fatty stool
weight loss / weight gain
fatigue
unexplained anemia
bone or joint pain
osteoporosis, osteopenia
behavioral changes
peripheral neuropathy
ataxia
muscle cramps
seizures
missed menstrual periods (often because of excessive weight loss)
infertility, recurrent miscarriage
delayed growth
failure to thrive in infants
pale sores inside the mouth, called aphthous ulcers
tooth discoloration or loss of enamel
itchy skin rash called dermatitis herpetiformis

There have been a couple of people on the Gluten Sensitivity/Celiac Disease forum here on BT who have mentioned swollen glands as a possible symptom. Sadly, those posts were lost during the crash last year.

Before I discovered my gluten sensitivity I thought I was dying. My fatigue(along with many other symptoms) was overwhelming. A diet eliminating these grains has given me back my life.

I know that gluten is not a problem for everyone, but it should not be overlooked when looking for answers to health problems.

A link to the Gluten Sensitivity/Celiac Disease forum: http://brain.hastypastry.net/forums/forumdisplay.php?f=152

The Gluten File - a collection of articles and abstracts http://jccglutenfree.googlepages.com/
Anne

[timaca]

Yes, I think viruses can have lingering effects. I think Stanford is doing some kind of study using anti-viral drugs on people that have chronic fatigue, and remember a time of getting ill and never feeling well after that. Maybe a google search of Stanford and anti-viral drugs will turn up the study. (I think it's Stanford---not positive though...sorrry)

Also, you might consider Lyme disease. Below is some info. Good luck. Timaca

A good symptom list on lyme is www.canlyme.com/patsymptoms.html.



A good article on lyme is www.canlyme.com/donta.html. Another article on lyme is at www.lyme.org/conferences/98_abstract.html (scroll down and read “Lyme Borreliosis and Related Disorders”—it’s about halfway down the page). Also at www.ilads.org, look on the left side. Click on “Treatment Guidelines.” Click on the article by Dr. Burrascano. Also at www.ilads.org, on the right hand side, click on “National Guideline Clearinghouse Treatment Guidelines.”



An article about chronic fatigue syndrome, fibromyalgia and lyme is www.canlyme.com/fibrocfslyme.html.



Some good labs for lyme testing are Igenex lab www.igenex.com

Medical Diagnostics Lab www.mdlab.com

and SUNY at Stony Brook www.path.sunysb.edu/labs/ticklab/TICKLAB.htm

It is suggested that one orders an IgG and IgM Western Blot test, at the very least. Ask the lab to report ALL bands. Ordering tests from more than one lab is also a good idea.



Some good articles on lyme testing are www.canlyme.com/wb.html and www.igenex.com/labtest.htm and www.igenex.com/lymeopt2.htm. Please note that there is NO definitive test for lyme disease. Lyme disease is a CLINICAL diagnosis….lab data is supportive ONLY. See the recent reseach from John Hopkins University: http://tinyurl.com/pjnkm.



A lyme magazine is Lyme Times and can be found at www.lymetimes.org



Some good lyme web sites are www.canlyme.com

www.columbia-lyme.org

www.lymediseaseassociation.org

www.lymepa.org

www.lymeinfo.net/lymefiles.html

www.ilads.org

www.unh-lyme.org

www.lymenet.org (a lyme disease support group)



To find a doctor that knows about lyme, go to www.lymenet.org. Click on flash discussions. Click on seeking a doctor and post there. Also go to www.lymediseaseassociation.org. Look for “Doctor Referrals” on the left hand side. Post there. They will get back to you in a week or so.

[Sandpuff]

Thanks to all of you for your thoughts. I think the doctor I just went to see was looking into Lyme and some other things and I'll be getting test results back this week. I appreciate all the ideas.

[timaca]

Good luck....keep us posted with what you find out. Timaca

[Mr.Doe]

Take a look at www.chronicneurotoxins.com and see if that fever years ago might match up with an exposure to a neurotoxin of some kind. Just a hunch.

[Cry Tears]

Is what I think sent me over the edge.
We'd just moved into this house after spending the entire summer remodeling it. It was only 12 years old when we purchased it...but was really wanting a new home...but we loved the setting this home is on...still love it.
We'd gotten rid of our two older kids...got them each brand new matching Honda Civic cars as an incentive for moving out. We gave them all our furniture so they could have stuff for the apartment they shared.
We lived in our RV for half a year while we worked on this house.
We took several months off work to do all the work ourselves such as tiling, putting in windows, skylights and carpeting.
I also purchased all new furniture for the entire house except very few antique peaces I love.
We finally moved into the house late September just in time for a very cold fall and early winter. We sealed up the house, ran the 2 fireplace inserts, one wood, the other pellets. After 2 months of this, January I began to have a very slight fever of 101*...never got higher.
My joints ached, then muscles joined in as well.
I tried going back to my Real Estate business...but going to the office in itself was overwhelming....I'd get there by 10 am, go home at noon.
That was in 1990...I was never able to go back to work ever again!
I was diagnosed with Fibromyalgia...then Crohns disease...then more health issues began to pile on me....way too many to write about here.
I feel it was all caused by all the chemicals I was exposed to during the cold snapp and our home sealed up tight during that time.
I had been diagnosed with Fibromyalgia in 1985 but had none of the symptoms other than irritable bowel and a few back aches on one trigger point spot. Did NOT even have fatigue! None! Was a whirl wind worker, working 6+ days a week. I loved my real estate "job"...it was more of a lifestyle than a job. I was one of the top selling agents in the area and was making a very, very good income.
I had everything to look foward to...a beautiful new homeon 3 heavenly acres with a marvelous view of forever, also filled with nice things, my wonderful job....a helpful and supportive husband.
No way did I want to be home playing "sick".
I was desperate to get well and get back to "life" as I knew it before moving into this place.
I'd give all this away...trade it for a dumpy little apartment and a job at McDonalds if ONLY I felt well.
To me there's been no way out of this pain and suffering...but I am seeking alternatives to my health issues and began trying this gluten free diet.
So far I'm seeing a slight improvment in some of my symptoms. Time will tell.
I do hope everyone here who's suffering...will find some answeres.
You MUST take charge of your own health...don't just sit back and allow your doctors to take the lead. This may end up killing you....I nearly died because I'd first allowed the doctors to take the lead....now I am the one in charge and I'm getting better...but only a little...but its better than what they've offered so far.
For what its worth...Cheryl