desperately seeking advice

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lexiloo
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 1/20/2010 4:30 PM (GMT -6)   
Hello all,

I hope someone here can reach out and help me. I was a healthy 19 year old female--a real go-getter with a 4.0 GPA at a good university, very independent, and running a successful business. Throughout childhood I had symptoms and signs that something wasn't right--such as a quick, childlike run with friends leaving me breathless or being breathless after a couple songs on the dancefloor, as well as bouts of fainting in the heat and summertime. I also had pain that was dismissed as "growing pains". None of this was really consistently debilitating and therefore not really pursued. My main medical history includes scoliosis surgery five years ago and acute pancricitis and SMA syndrome as complications of that. I was 5'6" and went down to 89 lbs because of those diseases! I also have a history of low blood pressure and running a low temperature. 99 is a real fever for me, for example.

This past summer, I experienced a lot of bouts of fainting for several weeks in June. This culminated in my suddenly not being able to walk at all or move my head on June 31st/July 1st 2009. I went to a hospital that night and they incorrectly told me that they would be unable to do an MRI because of my previous spine surgery and so there was no test that was worth doing. They drugged me A LOT (morphine, percoset, valium,and vicoden all at the same time, and I was only 115 lbs and 5'8) so that I was able to stand up and walk with assistance and sent me home. I moved back in with my parents the next day and started using a walker to help me. It was tremendously painful and scary!! My orthopedist sent me for MRI's of my complete spine, showing mild foraminal and spinal stenosis and bulging discs. He said it was nothing and sent me to a neurologist. I endured many more tests (including a brain MRI) and pretty much checked out normal. I was advised at the end of the summer to move back to school.

I did that and pushed through everything but by mid to late October I was fatigued and fainty all the time so my mother visited and we went to another local hospital. I was also having pain everytime I ate!!! Here I was told that it was all in my head. I had a CT scan of my brain which was normal and some basic blood work like CBC, pregnancy test, and drug scan. That was ALL they tested for! Released four days later with a walker and moved back home again. I had another brain MRI which was normal again. A week later I had to have emergency gall bladder surgery due to gall stones!! This was very concerning because I am a young, healthy, woman with no cholesterol problems and I was losing weight! That surgery was November 8th, so about 2 and a half months ago.

I have since been tested for everything under the sun including Lyme, lupus, RA, etc etc. We did find that I had a previous infection of Epstein-Barr which we think was during the summer. My mother whom I heavily favor has CFS, lupus, RA, fibromyalgia....so there is a possibility of CFS. I have been diagnosed with fibromyalgia and recently started a very low dose of Lyrica. I also "sort of" have hypoglycemia because I am losing so much weight my body is not storing enough. (according to endocrinologist, so it's kind of like "temporary hypoglycemia") These bouts include tremors, so I am not sure if my shaking is related to my blood sugar levels or not. I saw a nutritionist and while I've always been slender I am down to 102 lbs and am 5'8! It's so unhealthy looking, I don't even fit into adult clothing anymore. The nutritionist feels than I'm eating like 3,000 calories a day and therefore my weight loss cannot be attributed to a nutrition/diet problem. She feels that it's an auto-immune eating my body kind of disease problem, and I agree with her, even though the tests always come back normal. I also FEEL physically like something is eating away at my body. I do wear eyeglasses but my vision has worsened, however I am due for an eye exam anyway, so again, not sure if that is related.

I have all over body pain, including sciatic pain like when I step on different types of flooring, such as carpet or cobblestone. I also have fatigue, some confusion like mixing up my words but it seems pretty mild, headaches, adominal pain, bladder and bowel incontincence, trouble walking, neck pain, dizziness/vertigo/fainting, weight loss....My doctor just sent me for an MRI of my lumbar/sacreal spine due to the incontinence and it was completely normal. Based on phsyical exam my GI and primary doctors believe I have nerve damage in my spinal cord.

I'm not currently going for more tests. I want your opinion on whether I should ask to repeat the MRIs of the rest of my spine and/or brain, or to have a spinal tap and/or EVP. NONE of those sound fun and MRI's actually cause me a great deal of pain because I get stiff and it feels like my body "locks" but if they suspect I could have MS shouldn't they check everything in order to rule it as that or not?

I don't know what to do.

lexiloo
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 1/20/2010 4:34 PM (GMT -6)   
Forgot to mention, numbness, tingling, and some facial pain as well.

lexiloo
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 1/20/2010 4:36 PM (GMT -6)   
Ahh and also I just completed prescription Vitamin D and now have to start my OTC vitamin D with calcium!

Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 1/21/2010 10:58 AM (GMT -6)   
Hey Lex, sounds like you have your hands full. Are you taking supplements or even mixing them up such as taking some kind one month and another kind a different time? That can mess with just about every system in your body, especially metabolic rates...ie,weight loss,etc.

I recommend you go get a full blood work up from your GP as a starting point. Just get a normal complete physical is a ggod start. Once they have your blood work results ( and ask for hormonal tests), they can see where better to direct further testing.

I cant say you have MS or not. You have some of the symptoms, but MS is so wide ranged and terribly difficult to get a diagnosis, for some people, it may take months or years. I would also recommend setting up an appointment with a neuro Doc who's specialty is MS.

Gallbladder problems will can make you lose alot of weight. I also had an emergency GB surgery, lost tons of weight prior to and after. Took about 2 years to level off from it. You have been through SO MUCH in your young life that the stress alone could be messing with your weight.

Am so sorry you are dealing with all of this. I am no medical expert, but am here if you just need a little support. Hopefully someone else will post with maybe better advise than mine. Best to you~Kate
Hugs~Katie

Diagnosed w/MS~2008
Diagnosed w/Celiac 2009
Casein allergy~since forever


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 2:05 PM (GMT -6)   
Hi lexi,

Katie gave you some great advice. I really feel for you....I've been down a similar path in the past two years, and along the way I've picked up TONS of diagnoses, but the latest one, Lyme disease, may actually be the key to my biggest (unexplained) problems: my neuro issues.

Well, obviously you really need to get to the bottom of your problems! The tests that Katie recommended are a very important start.

You said you were tested for several different autoimmune diseases...did that include celiac disease or Crohn's? I ask because of the weight loss and abdominal pain issues.

What about adrenal insufficiency? I know that my youngest daughter suffers from that, and she has had some of your issues, including severe fatigue and syncope (fainting).

Also, did they just do the Lyme ELISA test on you or did they run the Western Blot test, which is much more specific and sensitive?

You should be aware that nearly all labs in the country INCORRECTLY use the CDC standards for determining positive or negative on Lyme disease tests. Even the CDC says that these standards should NOT be used to diagnose, but doctors ignore this warning and use those standards anyway. The International Lyme and Associated Disease Society (ILADS) fought in court to change the current IDSA standards for diagnosis of Lyme disease and they WON....BUT the new standards won't go into effect for several months!

There are a few labs that use the more up-to-date standards; the one I used was Igenex lab.

igenex.com/Website/

I actually ordered a Lyme disease Western Blot test kit from Igenex labs, took it to my doctor, who did the order and the blood draw. Then my husband took the kit to Fedex and sent it off. It cost me $475 but sure enough, I was negative by CDC standards but POSITIVE by Igenex standards.

I have had an explosion of diagnoses in the past two years, and to tell you the truth, I believe that Lyme disease triggered most of these issues. Well, either that or it's mimicking them, which it does quite well. I just started treatment yesterday....I have hopes that I will be MUCH better in a few months.

Anyway, I just thought I should share my experiences because of the very remote possibility that some of this info might be useful to you.

Best wishes and ((((hugs))))
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 2:22 PM (GMT -6)   
P.S. In case anyone is curious about why I'm so hyped up about Lyme disease, and why I think I should talk about it on an MS forum, you should watch the following video. It shows how incredibly easy it is to catch Lyme disease these days (even in your own backyard), and just what it can do to you (see Victoria, before and after):

www.youtube.com/watch?v=4ALgOikmjCw
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com

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