unable to find doctor who can help

[dazyrose]

i am not sure you can help but kind of my last resort.  i have been diagnosed collagen vascular "smoldering scleroderma",  i had abdominal aortic aneurysm 8 years ago and since that time i am bed ridden.  i was 125 and active before the surgery but when i came out of recovery i was told i now weighed 180.  since the surgery we have gone to cleveland clinic and were told muscular dystrophy ..mytochondrial myopathy.  i have had numerous mri's. the recent two were for neck injury but ended up having 2 of head which showed some type of problem with ponz area which neurologist who was very vague only stated get a good diabetic doctor and pain control doctor, there is nothing i can do.  pain control over the 8 years only gives methadose which does not take away the pain.  recently he tried steroids in a 6 day regime which helped but years ago i almost died according to rheumatologist because i went cushinoids.  took over 1 year to get off steroids. fear is will this happen again? but pain control says i need them and to go to family doctor for them.  i have major rash that breaks out under breasts, along thigh and belly button.  doctor says use foot powder and put maxi pad over the areas. says caused from being diabetic but my numbers are never that high and only began happening after the major surgery.  i have been told i have fibromyalgia, muscular dystrophy, asthma, gerd, diabetes 2, raynauds, collagen vascular, possible scleroderma, 2 forms cataracs, neuropathy, hernia in stomach and sliding hernia, lumps in my stomach (many of them), carpal tunnel..to name a few. isn't this kind of a lot of dx for 1 person?  i feel the docs are missing something.  i am only 57 and docs do not seem to care i am bed ridden.  my mind works great.wish it didn't then i would not care so disparately about getting out of this bed.thank you!

[heather7628]

I am 33 years old.  I have been sick since I was 17.  When I was 17 I ran a high fever every night at 9 pm that lasted until 1am, like clock work for a month.  They tested me for evrything and could not find anything wrong.  I got better, then at 18 i got pregnant.  i delivered my son by c-section and he was healthy. I had two more children and they were healthy also.  I have never weighed over 125lbs.   at 22 I lost my top teeth and 24 my bottom teeth.  I run fevers for no apparent reason now and my pulse rate is around 110 all the time.  I have been diagnosed with Raynauds syndrome and low vitamin d.  I am on .2mg of nitroglycerin an hour, 200mgs of pletal a day, and 55000iu every 5 days.  I also take hydrocodone 10mg a day for pain 1 mg xanex every night and 30 mg of adderall a day.   I also can not take cortisone, I do not know why but i turn real red and start hurting 10 times worse than i usually do.  I am tired of hurting and tired of being tired.  My ana titter test came back positive low 30  they say i do not have RA or lupus. I also have heart palpitations and chest pain.  My EKG was abnormal but after the chest x-ray the  dr said my heart was good.  I do not know what to do, or ask the dr to do.  Could the vitamin d deficiency be causing all of this pain?  And why is my vitamin d so low I was out in the son all summer.  I had melanoma when I was 23 but they said they got it all.  I just do not understand.  I live in the south so i get alot of sun why is my vitamin d low, and my calcium is normal.

[cjruz]

maybe parasites,check out the cure zone

[Tired480]

How can I find out if I have parasites?? I did a number of stool tests but all negative. I deal with Candida Albicans. I've been on a yeast and sugar free diet as well as anti fungal meds since 2007. My vaginal infections get better but don't clear up. Rectal itching and pain got better with antibiotics but didn't go away.  I beleive I have parasites that's why I'm unable to get over the Candida infection. Can blood work show the presence of parasites??

[micki_bus]

A related discussion, I was told I have lupas sle could it be ms i was started.

[invyzabul]

A related discussion, Need some direction was started.

[Melodytorn]

A related discussion, Lupus was started.

[dazyrose]

put toni's answer on mine..i checked toni's and she had same answer.

[Garth L Nicolson, PhD]

From your signs/symptoms, especially the low-grade fevers, swollen adenoids and skin symptoms, point to one or more chronic infections.  It turns out that most of the Lupus patients with these s/s that we tested had chronic infections.  Treatment of these infections allowed these patients to slowly recover, but it took some time before they showed much progress during treatment.