Help! What Is Going On?

[julie5914]

I really need some of your help. My doctors keep running one test, and then if it is neg, I get a dead end. They tell me the results on the phone and then I have to call back to get seen again to continue to pursue what is wrong.

I have had something swollen with a stiff, icky feeling off and on in my neck for about 8 months. For the past 5 weeks, it has been constant. I have been stiff and tired all over a lot, and I have some overuse injuries that refuse to heal. This past year I have gained about 10 pounds for no good reason and gotten acne. My hands and feet get tingly and are falling asleep a lot. My hair is shedding much more than usual.

I get headaches failrly regularly, but sometimes they wake up in absolute terror, with me wanting to shoot myself. I had the worse one ever last night. I woke up at 3am in extreme pain. THe pain went from right above my left eye down to the base of my skull at my neck, connecting in with the pain I have had in my neck. I wanted to die. I was nauseated, which I have never had with this headache before, hot, restless, and my ears/hearing felt numb. I was afraid I was dying of some sort of stroke, but that would have been fine with me at the moment if it would stop the pain. Eventually the Tylenol PM that I took kicked in and I fell back to sleep. I awoke this morning in a stiff, exhausted fog.

I have had a positive ANA, positive celiac obviously, but the other tests for lupus were neg. Here's a few things I suspect:

- hormonal changes would bring on acne and frequent (monthly) migraines - maybe I need to change pills. BUt then what about this neck stuff and muscle stiffness

- I actually have lupus or MTCD and those tests are not very good

- I have lyme disease (no idea when I would have been bitten)

- I have some other infection that would cause lymph node swelling and headaches, like TB

Has anyone had this stuff altogether? Can you point me in the right direction so I can feel confident going back to the doctor again and not crazy?

Thanks, I really need support right now.

[LUAP]

julie,

all your symptoms fit the yeast profile. you should go at mercola.com to test your metabolic type (what proportion of protein, fat ,and carb you should eat at every meal to be healthy). and then put yourself on the one you love diet against yeast.

easy as that. and i would also test for diabetes because your symptoms could also be linked to diabetes.

[Guest BERNESES]

Have you gotten glutened recently? Are you sure you are totally gluten-free (including cosmetics etc.)? I got severely glutened about a month ago and I had excruciating back and neck pain- they tested me for Lyme's and it was negative. I suspect that it was the gluten in my system that did it. I also break out in painful cystic acne for awhile after I've been glutened.

Don't know if this helps but just wanted to let you know what happened with me. It was unbelievable- I got three menstrual periods in six weeks, my breasts hurt so bad I could NOT go braless at all and if anyone touched them I felt like I was going to scream!

[Guest BERNESES]

Actually, I have been tested for TB as well. In the beginning, before my idiot FORMER GI would even consider Celiac's he tested me for everything known to mankind (HIV, Hepatitis, cancer, TB, I had a CT scan, the whole shebang). Long story but the only good part of it was that it cleared me of everything except gallstones and Celiac's. maybe you should just call your doctor, ask for a full blood work panel and a CT scan or MRI. If you're doctor won't do it, find one who will. Let me know if I can help. Best wishes, Beverly

[julie5914]

Thanks - I ordered a women's health panel from Quest Test - you can just order your own tests from them without a doctor. It still showing more the same off numbers but luckily no evidence of anything bad like organ damage. I had low urea nitrogen (only really bad when it is high) some funky blood numbers that indicate iron deficiency anemia although I am not anemic anymore (TIBC high some differenial stuff weird and a high number called absolute eo..phil something?).

It also showed that my TSH is higher - 3.26 I think it said, but the range was up till 5.5, so it didn't highlight it.

I was feeling better earlier this week with no excercise and lots of rest. Then I went to Walmart and felt the lump in throat and tiredness again. Guess Walmart will do that to ya

I got glutened the first week of August - I do wonder if my troubles are just Celiac related. All blood tests are just showing "something autoimmune" - could be Celiac, could be more.

I am working on seeing a doctor in SC that will send you a huge questionnaire and have you fill it out and send it back with your med records. She will look it over without cost and call you if she thinks she can help. She doesn't do the insurance thing, although she will do the paperwork with codes that they are likely to cover. Your first visit is 2 hours, and she doesn't stop until she finds out what's wrong. It says on their Web site they know all about Celiac - they both have it (it is an internest and a PA). www.paradocshealth.com. They are in SC. I hope they can help if this doesn't resolve.

How long did it take people to feel better? -- My gastro stuff was gone almost immediately when I went gluten-free, but it's like that's when the other stuff started or got stronger. It has been almost 3 months, and I have only had 1 accident.