Discussions By Condition: Autoimmune Disease

What kind of Autoimmune Disease is this?

Posted In: Autoimmune Disease 13 Replies
  • Posted By: erobbins
  • February 12, 2007
  • 07:01 PM

Hello. I am a 30 year old female who has been mostly healthy my whole life (aside from bad asthma and frequent colds, chronic sinus infections) until 5 months ago.

I started getting terrible headaches behind my eyes, pain burning and numbness in my arms and legs sometimes very severe, constant nausea, constipation, bouts of vomiting, weight loss, extreme exhaustion, some confusion, some tremors, (maybe from lack of food I now realize) and granuloma growths on my face (that started about 1 year ago). I should say that before this I have never had any of these symptoms. The pain in my head is somewhat better now which is good.

I thought at first it was a bad sinus infection, CT scan showed significant infection and polyps, but antibiotics and prednisone cleared it u quite a bit and 3 ENTs told me I definately had another problem going on.

So I eventually ended up in the hospital after doctors saw me loose so much weight. I had an MRI of my brain and back that were normal, EEG and EKG normal (less mitro valve prolapse). Chest x ray normal. Spinal Tap was normal. I had lots of blood tests: the whole infectious disease workup came back normal (including lymes, etc), my sed rate, c-reactive protien, ANCA all were normal. They had at one point thought it was Churg-Strauss, a rare form of vasculitus, but ruled it out b/c of these tests.

The abnormalities that have come up are slightly below normal white and red blood count consistently, high mcv and high mch (but no anemia). My eosinophiles are also high (I think this can be from allergies?) I have catiracs in my eyes which is very strange (and didnt have 1 1/2 years ago) My vitamin D is low, alkaline phosphate is low. My rhumetological workup showed low C4, but all other normal tests, for lupus, etc. I had blood tests from GI doctor, which came back negative. He wants to do the tube in my stomach, take biopsies and do CT scans of my stomach but havent done that yet.

I had a biopsy of one of the growths on my face that reported it was probably necrobiotic xanthogranuloma, a very rare disesase. Sarcoidosis was a possible alternative, but no one thinks I have this b/c my lungs are clear and my blood tests are negative and apparently this never happens? I had bloodwork done that showed no paraproteinemia, which 80% of the cases of necrobiotic granuloma have. So I am sending slides of the biopsy to NIH for a second opinion.

I am going to a chiropractor 3 times a week, was going to acupuncture but can't drive anymore (and wasnt getting relief as I usually do with acupuncture) so stopped. I eat really well (except with this when I am too nauscious or throw up). I had my hair tested for heavy metals and it showed some burdens, but my osteopath told me that there was also another disease process going on and I needed a diagnosis. So I have started chelation treatments, but just enough to get a urine test to see what my heavy metal burden really is. After my second chelation, I was violently sick for 2 days, which apparently never happens. I think it may be from whatever is wrong with my stomach, but I am afraid to get more chelation. At least I will know how much heavy metal toxcicity I have.

I cannot drive because I have some blurry vision issues (maybe from catiracks, or maybe from another granuloma growing in my eye socket). I am trying to still work and I have a job with a lot of responsibilities, if I dont work I cant give the work to someone else -but it is very difficult with all of the pain and exhaustion. And disability has been hard to get because of no diagnosis. I have a very hard time sleeping with the pain, am so exhausted that I barely get out of bed, and have bouts of barely being able to walk because of the pain/numbness in my legs. My body has also felt like it s a dead weight and I get muscle weakness.

I generally have a good attitude, but when I am in so much pain and when I am unable to function for weeks, months it gets to be really hard.

I just wanted to put this out there to see if anyone has any insight or suggestions.

Thank you!!

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13 Replies:

  • HI! I AM SORRY TO HEAR ABOUT ALL OF YOUR AILMENTS. I AM A 33 YEAR OLD FEMALE WHO HAS SOMEWHAT OF THE SAME SYMPTOMS. I WAS DIAGNOSED W/SARCOIDOSIS. LOOK THIS UP ON THE INTERNET. I AM ALSO A REGISTERED NURSE. I HAVE GRANULOMAS IN ALMOST ALL OF MY ORGANS. I WANT YOU TO RESEARCH MYASTHENIA GRAVIS. WITH ALL OF THE MUSCLE WEAKNESS AND EYE PROBLEMS IT KIND OF MATCHES UP. I HOPE YOU GET A DIAGNOSIS SOON. IT IS SO FRUSTRATING WHEN YOU ARE SO SICK AND NOBODY CAN GIVE YOU ANSWERS. GOOD LUCK AND LET ME KNOW HOW THINGS WORK OUT. JENNIFER:o
    jennifermogus 3 Replies
    • February 14, 2007
    • 01:11 AM
    • 0
    Flag this Response
  • SARCOIDOSIS is conneceted to LYME Disease . Ms, Lupus, and much more is connected to Lyme. Search for the Marshall protocol and visit www.lymenet.org Its so frustrating when you feel so poorly and not get any help. Hope you get help soon.
    Anonymous 42789 Replies
    • February 20, 2007
    • 02:01 PM
    • 0
    Flag this Response
  • Hi to all.I have been having these symptoms since the summer last year.10 yrs ago when i had my first child i became unwell,after many tests(ALL NORMAL) WAS TOLD BY A NUTRITIONIST,that it was systemic candida,still battling with that,anyway some of the same syptoms you have,i was in turkey visiting my mother,just started having clumsy painfull numb hands also running up my arms,burning sensation in left hand,twitching appeared in my bottom lip,disappeared after 3 days then appeared in other muscles,very heavy led legs,extremely lethargic body,and vision was jumpy,blury,palpitations,dizzy like vertigo.Returned to England,demanded tests,especially for MS,all normal,still the same,vision very scarey,do not have visible signs of eye problems though,still extremely worried its MS,doctors did no further tests,never had any blood tests for disease,but have had full blood count,this was higher than normal,but doc passed it as normal,WOULD THIS BE A SIGN OF ANYTHING??????ANYONE???also noticed a bite i had flared up 3weeks later like a rash round it,could this be anything????does anyone suggest any test for me,am seeing doc again thursday,very very worried.ANY SUGGESTIONS ANYONEGOD BLESS U ALL
    Anonymous 42789 Replies Flag this Response
  • I just lost my mother to the very rare disease Wegners Granulomotosis, she suffered many of the ailments you described. She was mis-diagnosed several times until they finally ruled out everything from arth. to lupus to Goodpastures to MS etc, make sure you are tested for WG...and I hope and pray for you that it is negative.
    Anonymous 42789 Replies Flag this Response
  • I am dealing with something strange also. All my lab test came back fine too. My main symptom is facial swelling/heaviness , lightheadedness and brain fog. I do have a small adrenal nodule that I am in the process of getting checked out. This swelling started after my hysterectomy. Sometimes feel like my whole head is swollen. I have had 2 ct scans of sinus and they are fine. Brain MRI fine. Ct of Parotid gland fine. SED rate, ANA, TSH, T3, T4 all fine. Some days symptoms are worse somedays a little better but never goes away. I have tried Prenisone and Antibiotics because they thought I have a sinus infection, Diflucan because then I thought it was a yeast infection in the sinus cavity, asytilline nose spray, does seem to help a little with under eye swelling along with nasocort. Also tried diuretics. Not helpful after diuretic wears off. To the person whos loved one had Weggeners? What where her symptoms and How did they finally diagnose it?
    fluffyv 38 Replies Flag this Response
  • Try the Marshall Protocol
    Anonymous 42789 Replies Flag this Response
  • If your eosinophil levels are elevated, you have nasal polyps and you have asthma, it sounds like Churg-Strauss to me, even if your ESR and CRP is normal. I would try to find a rheumatologist or immunologist that has some experience with this disease.
    Doug97 2 Replies Flag this Response
  • i am 23 i have head acks , bowl problumes, cronic hives musil pain freavers for no reason nosa and vomating also most of this started the day after my son was born he is 2 now and my Dr is just now testing me for one big pic why is it that it takes so long for them to do anny thing
    Anonymous 42789 Replies Flag this Response
  • Hello. I am a 30 year old female who has been mostly healthy my whole life (aside from bad asthma and frequent colds, chronic sinus infections) until 5 months ago. I started getting terrible headaches behind my eyes, pain burning and numbness in my arms and legs sometimes very severe, constant nausea, constipation, bouts of vomiting, weight loss, extreme exhaustion, some confusion, some tremors, (maybe from lack of food I now realize) and granuloma growths on my face (that started about 1 year ago). I should say that before this I have never had any of these symptoms. The pain in my head is somewhat better now which is good. I thought at first it was a bad sinus infection, CT scan showed significant infection and polyps, but antibiotics and prednisone cleared it u quite a bit and 3 ENTs told me I definately had another problem going on. So I eventually ended up in the hospital after doctors saw me loose so much weight. I had an MRI of my brain and back that were normal, EEG and EKG normal (less mitro valve prolapse). Chest x ray normal. Spinal Tap was normal. I had lots of blood tests: the whole infectious disease workup came back normal (including lymes, etc), my sed rate, c-reactive protien, ANCA all were normal. They had at one point thought it was Churg-Strauss, a rare form of vasculitus, but ruled it out b/c of these tests. The abnormalities that have come up are slightly below normal white and red blood count consistently, high mcv and high mch (but no anemia). My eosinophiles are also high (I think this can be from allergies?) I have catiracs in my eyes which is very strange (and didnt have 1 1/2 years ago) My vitamin D is low, alkaline phosphate is low. My rhumetological workup showed low C4, but all other normal tests, for lupus, etc. I had blood tests from GI doctor, which came back negative. He wants to do the tube in my stomach, take biopsies and do CT scans of my stomach but havent done that yet. I had a biopsy of one of the growths on my face that reported it was probably necrobiotic xanthogranuloma, a very rare disesase. Sarcoidosis was a possible alternative, but no one thinks I have this b/c my lungs are clear and my blood tests are negative and apparently this never happens? I had bloodwork done that showed no paraproteinemia, which 80% of the cases of necrobiotic granuloma have. So I am sending slides of the biopsy to NIH for a second opinion. I am going to a chiropractor 3 times a week, was going to acupuncture but can't drive anymore (and wasnt getting relief as I usually do with acupuncture) so stopped. I eat really well (except with this when I am too nauscious or throw up). I had my hair tested for heavy metals and it showed some burdens, but my osteopath told me that there was also another disease process going on and I needed a diagnosis. So I have started chelation treatments, but just enough to get a urine test to see what my heavy metal burden really is. After my second chelation, I was violently sick for 2 days, which apparently never happens. I think it may be from whatever is wrong with my stomach, but I am afraid to get more chelation. At least I will know how much heavy metal toxcicity I have. I cannot drive because I have some blurry vision issues (maybe from catiracks, or maybe from another granuloma growing in my eye socket). I am trying to still work and I have a job with a lot of responsibilities, if I dont work I cant give the work to someone else -but it is very difficult with all of the pain and exhaustion. And disability has been hard to get because of no diagnosis. I have a very hard time sleeping with the pain, am so exhausted that I barely get out of bed, and have bouts of barely being able to walk because of the pain/numbness in my legs. My body has also felt like it s a dead weight and I get muscle weakness. I generally have a good attitude, but when I am in so much pain and when I am unable to function for weeks, months it gets to be really hard. I just wanted to put this out there to see if anyone has any insight or suggestions. Thank you!! Have your doctors tested you for Wegeners Granulomatosis? It is a rare vasculitis disease with similar symptoms.
    maggie anne 2 Replies Flag this Response
  • I just lost my mother to the very rare disease Wegners Granulomotosis, she suffered many of the ailments you described. She was mis-diagnosed several times until they finally ruled out everything from arth. to lupus to Goodpastures to MS etc, make sure you are tested for WG...and I hope and pray for you that it is negative. I have this disease and would love to hear about what your mother went through, if you dont mind sharing with me. I had a difficult time getting diagnosed myself.
    maggie anne 2 Replies Flag this Response
  • I just lost my mother to the very rare disease Wegners Granulomotosis, she suffered many of the ailments you described. She was mis-diagnosed several times until they finally ruled out everything from arth. to lupus to Goodpastures to MS etc, make sure you are tested for WG...and I hope and pray for you that it is negative.I have been living with Wegeners for 17 years, I hope Pray that is negative.
    Apache 1 Replies Flag this Response
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  • erobbins, so sorry to hear all these bad things happening. Unfortunately sometimes many autoimmune conditions come together - I have a few - hashimoto's thyroid, myositis, raynaud's etc. You need a specialist center i.e. somewhere that specialises in these diseases. It also helps to get a diagnosis if like others have suggested you research some conditions with your symptoms but this can also be confusing. I personally would focus on the skin thing. A good place to start may be http://autoimmunediseaselist.com/ which lists which part of the body is affected: nerves and muscles; liver and gallbladder; blood vessels including arteries and veins. Here is an example: " Allergic granulomatosis and angiitis or Churg-Strauss syndrome (CSS) has 3 distinct phases - with symptoms depending on organs involved -Allergic with asthma, sinus pain, headache; Eosinophilic phase with weight loss and sweats; Vasculitic with pain, numbness & weakness in extremities." I picked this one as it does sound a bit like what you described? Good Luck
    freelee 3 Replies Flag this Response
  • have most of your symtoms and, as with you, had almost a year of tests that came back ok, and several doctors in several towns, all without a diagnosis. Finally had to go to mayo clinic-Arizona where they diagnosed me with autoimmune autonomic neuropathy. You might look into this
    mjbradley 1 Replies Flag this Response
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