If I don't get help soon I'm afraid I won't be able to use my legs anymore

[CrestedGecko]

About a year ago I started having abdominal pain. I felt nauseated and fatigued almost all the time. The doctor couldn't find anything wrong with me. A month later I began having severe pelvic pain. Urine tests and pelvic ultrasound came up negative. It continued to get worse until it spread to my left leg a month after that. I went to the hospital and was misdiagnosed with sciatica. MRIs and X-rays of my back came up normal. Treatment failed. I saw an orthopedic doctor, who examined me and told me nothing is wrong with me orthopedically. He refered me to a gynocologist, who diagnosed me with interstitial cystitis/peripheral neuropathy. Rescue rinses made my symptoms worse, so he started nerve blocks. I've had two, and they have helped my pelvic pain but not my leg pain.

Over the past few days I have developed some new symptoms. For 5 days I have been sore in my neck, arms, and legs. My legs are the worst of it. When I try to walk my legs give out on me. My stomach has also gotten much worse the past few days - after I eat I get extremely nauseated and dizzy to the point that I can't walk.

I am worried that I am losing control of my body and if I don't get an answer soon it will deteriate to the point that I can't use it anymore.  I've seen several doctors and none of them has had a real answer for me other than IC.  I know there is something else going on and I need help!

[CrestedGecko]

I don't believe I have celiac because the most soothing foods for me are wheat-based.  I already suffer from IC which restricts my diet a lot- I can't eat fruits or anything acidic.  So I highly doubt I have celiac disease because my stomach has started feeling better since I started eating less acidic foods and consequently added more wheat to my diet.  I won't rule it out as a possibility, however.  I appreciate your advice.

I made an appointment with a rheumatoligist on monday and I'll ask him if he knows anything about lyme.  If not, I will find a doctor who does and make sure I get tested for it pronto.

[earthtonegrrl]

You have a brother with Celiac? That raises your chance of having it to about 11%, symptomatic or not. Since you're showing a lot of symptoms, I would not rule it out just because of a negative blood test a few years ago. First of all, the blood tests are not terribly accurate, even though doctors swear by them as gospel. Especially if they only ran the single test - the IgA AGA. The full panel (looking at four factors instead of one) is more accurate, though false negatives are still common. If you happen to be IgA deficient, the single blood test will not come up positive - and IgA deficiency is more common among Celiacs.

Second, the blood test will only come up positive after enough damage has been done. So if you had the test several years ago, it is entirely possible that it will come up positive now.

If you turn out not to have Lyme (and I agree with Loretta - make sure you find a Lyme literate doctor), I'd strongly urge you to get re-tested and then try a gluten-free diet for a month, whether or not the test comes up positive. There are many people, including myself, who've found help from a gluten-free diet despite a negative blood test. It may be inconvenient, but it's sure worth it if it helps you get your life back.

Hoping you get some good answers, soon!!

[khan55]

Dear you will get these medicine from any grocery shop or indian shop.the name of medicine also translated by any indian.
1,. saunf  20 gms
2,  jeera   20 gms
3,  hieng   05 gms
4,  nausader  20 gms
5,  pippal       20 gms
6,  black salt  20 gms.

grind and mix well.take 1/4 teaspoon thrice a day half an hour before every meal.take planty of water in early morning.
in few days your stomach will satteled at their normal and all related symptoms elimanated.
Also avoide alcohal and oral sex.

[khan55]

Dear you will get these medicine from any grocery shop or indian shop.the name of medicine also translated by any indian.
1,. saunf  20 gms
2,  jeera   20 gms
3,  hieng   05 gms
4,  nausader  20 gms
5,  pippal       20 gms
6,  black salt  20 gms.

grind and mix well.take 1/4 teaspoon thrice a day half an hour before every meal.take planty of water in early morning.
in few days your stomach will satteled at their normal and all related symptoms elimanated.
Also avoide alcohal and oral sex.

[loretta333]

I just wanted to say...sounds like lyme. I have it and it took 25 years to get the diagnosis. I had everything that you are taling about and more. You dont have to have a tick bite. It is also spread by mesquitos and sometimes  person to person who have intimate contact. So, just because you don't remember exposure doesn't mean you don;t have it. Most doctors don't know about it so you need to find a Lyme Literat Doctor...or LLD in your area. They WILL believe your symptoms and dig until they find the answers. Please look into it.

[CrestedGecko]

I was tested for celiac a few years ago when my brother was diagnosed with it.  I've always had stomach problems so I was worried about that, but it was negative.  I have seen lot on lyme disease when I'm researching my symptoms on the internet.  It seems like a possibility, but I'm not really exposed to ticks where I live, and that year I hardly spent any time outdoors.  Also, I remember being bitten by a tick when I was little and since my skin is so sensitive I doubt I could be bitten and not realize it...  I will definately get checked, though.  You never know.

[earthtonegrrl]

There's a girl on the WebMD boards, screen name Renny1985, who had somewhat similar symptoms to yours. She was awfully sick for something like 6 years, and was misdiagnosed with just about everything doctors could dream up. Finally recently she got diagnosed with Lyme Disease - apparently she's had it for years and years.

Also, be sure they test you for Celiac disease. It can cause all sorts of body pains including peripheral neuropathy, it's pretty common (about 1% of the population) and it's even more common if you have any other autoimmune condition (like IC).

Get copies of your medical reports from your doctors and read through them yourself - especially with a complex case like yours, things can be missed...

Sometimes it's hard to make the doctors understand that we actually do know our bodies fairly well. Keep pushing. You may be one of the many, many patients who's going to have to be persistent if you want to get diagnosed. You're probably seeing that already. It's hard, when the folks in white coats are telling you you're fine, you start to doubt yourself. I mean, sure, you have to keep a healthy skepticism ;) but your symptoms are NOT in your head.

One thing a friend recommends in cases like this is to go to as many different specialists as you can. If you have abdominal pain, see a gastro; if you have eye pain, seen an opthamologist.  Another thing she recommends is bring a friend with you to the doctors if you can... 1.) having someone else there who can attest to the fact that, yes, you are in pain, they've witnessed it - helps your creditbility with the doctor and helps your confidence level.  2.) they can help you remember what the doc said and may think of different questions to ask that you wouldn't have thought of.

So - get tested for Celiac & Lyme, get copies of your records, and don't give up!  Let us know how it turns out.