Which Autoimmune Disease is it?

[Kristina1]

I am a 35 year old woman, 109 lb, 67”.
In 2006 about three months after the birth I started having pains in joints and bones. Joints were more and more sore. For a few months syptoms (symptoms) increase and change: I was very tired,low energy, sleep disturbances, muscle twitching, upset intestine (running stools , yellow gel),burning feeling in feet ,swollen muscles feeling, chest pain,itchy skin, livedo reticulatis in legs and arms, red spots under the skin in wrists and calves, dizziness, ear ringing, ear pain sometimes, flu like symptoms, red itchy scalp in the back of the head, red eyes, plus foot and hand vibrations. All symptoms worsen for a few days and than get a better for some days or weeks.
*BLOOD TESTS (normal results): ANA,ANCA-S, all kind of lupus and RF test.
Dec 2006. Coughed up blood. Broncohoscopy: small amount fresh blood in one lung, no inflammation. Chest x-rays, MRI, Angiography,Kidney ultrasound,  normal. MRI Brain: No inflammation of brain vessels.
Doc #1: All symptoms point to an autoimmune disease but tests show no signs of it. No sign on inflammations or infections. Try Prednisolon 25mg for 2weeks (If you get better it’s for sure an autoimmune disease).
I take prednisolon and I feel better, cool feeling in chest, pains and twitchings gone, more energy.
March 2007: I stared having night sweats and morning palpitation. Can’t sleep past 4:00 am. I still have some livedo, red spots, dizziness, ear ringing.(now taking 30 mg at 8:00am, 15mg at 2:00pm).
What kind of autoimmune disease do I have?

[Kevin Pho, MD]

Difficult to say.  Comprehensive tests have been done.  A negative ANA, RF and ANCA test would make rheumatological disease less likely.  

Another test to consider would be a sedimentation rate or C-reactive protein.  These tests can determine if there is inflammation present, and can help point to a reactive process.  Another opinion with a rheumatologist can be considered to exclude autoimmune disease.

If the tests remain negative, you can look for other systems.  This can include a neurology referral - with tests to evaluate the burning the feet (i.e. with a B-12 level and nerve conduction studies).  

The palpitations can be further evaluated with an echocardiogram and Holter monitor.  

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[PlateletGal]

You may want to consider seeing a physician who treats fibromyalgia and CFIDS patients'. There is new research in on CFIDS and some treatments available. If you have CFS... the sooner you get treated... the better ! Unfortunately, an estimated 80% of people who have CFS have yet to be diagnosed.

Most of the symptoms you listed, and especially the ringing in the ears, can all be due to CFS or fibromyalgia.

[Kristina1]

Hi,
I guess I have to do all the testing (next is the biopsy) hoping thay are all normal before they can rule out and Autoimmune disease. But they are thinking Vasculitis.
I definately have many many symptoms of CFSDS too.....
Thank you for the info.

[PlateletGal]

Hi Kristina,

Good luck with your biopsy. If you do get diagnosed with CFIDS, you may want to google "Marshall Protocol". I'm currently on this protocol and getting better... slowly, but surely !

[jenn38018]

I just wanted to jump in on your question if you don't mind.  I have been struggling to get a proper diagnosis for eight years now.  The reality is, these diseases are so hard to diagnose that you sometimes have to get pretty bad off with your symptoms before they can even begin to know what you are dealing with.  I too had worsening of symptoms after having both of my children.  This goes along with several autoimmune diseases.  You also have a lot of the same symptoms as myself, except that I have started developing many neurological symptoms as well.  

I was diagnosed with rhuematoid arthritis about eight years ago.  Two years ago I switched to my fourth rheumatologist because I wasn't getting any results from the many RA treatments I had been on (I was infact getting many adverse reactions from the treatments).  This new doc decided I didn't have RA, but instead fibro.  My blood tests for the past eight years have always come up very high rheumatoid factor, positive ANA screen, and elevated sed rate during intense flare ups.  In the past few years my ANA screen has started coming up with a speckled pattern.  Bone scans at the age of 26 showed mild uptake and arthritis in the hands/fingers, wrists, ankles, feet, and hips.  The nuerological symptoms I started developing after giving birth are worsening to a degree of disability and are consistent with MS.  I am now seeing my third neurologist and she is conducting all of the necessary tests to try and find MS (MRI's of brain, spine, and neck;EEG; EVP's;lumbar puncture;NCS).  I am NOT convinced I have fibromyalgia.  I just think I have too many physical findings to say this is all just fibro.  I am about to change rheumatologists once again.

I am not trying to scare you or sound like a complainer.  I just want you to know what it took me eight years to figure out.  They can pretty much tell you have something, but knowing for sure what it is could take years.  Once you do get diagnosed, it almost never a 100% diagnosis.  There are so many females in my family dealing with autoimmune diseases.  We have all been through the same frustrations you are going through.  Don't feel alone.  Do as much research as you can on all of the autoimmune diseases, and don't give up until you have answers.  Let me know if you have any questions.

Jenn

[PlateletGal]

Hi Jenn,

I just read your post to Kristina and looked for a research study I read recently on patients' who have fibro, but have positive labs. I have CFS and I also have a high ANA titer (1:640 - speckled pattern). I just hope you can find a treatment that is working for you. Anyway, here were the results from the study:


"Our results revealed abnormalities of the following inflammatory Markers: ESR elevated in 26.9% ( n=160 ) and CRP high in 36.6% ( n=231 )
Serological abnormalities included 29.3% ( n=185 ) positive ANA and 21.5% (n=136) positive RF." (rheumatoid factor)

source:


AB0765   INFLAMMATORY FIBROMYALGIA : IS IT REAL ?
S. K. Metyas1, D. G. Arkfeld2, J. A. Ibrahim3, G. Ehresmann2
1Rheumatology, University of Southern California - Keck School of Medicine, 2Rheumatology, University of Southern California- Keck School of Medicine, Los Angeles, 3Rheumatology, Research associate, Covina, California, United States

[Dixie Lady]

Dixie Lady--- I am a 53  and female and I have been diagnosed with Cryoglobulinemia. My rheumatolagist has done a million test on me. I am negative for all usual reasons for cryo. I do not have Lupus, Hepatitis, Cancer, Multiple mylomas. I have been on Prenisone for almost 2 years and  I am now down to 5mg every day, along with 6 Methotrexate once a week. I have vasculitis, myoclous and neuropathy. My SED rate dropped to 40 so, so we started the prednisone to 5mg every other day. My next lab report shows the SED rate was up to 53. The cryo rash so far has been on my feet and legs, so I am very happy for that. We can not find any reason for the disease. Dp you have any ideas? I hear that Cryo is rare, but is more rare when you can not find the reason for having it. Do you know the stats on the number if people who have this disease? I have a great deal of faith in my Doctor and feel I am blessed for having him as my doctor. Any ideas would be greatly apperocated.

Jennie 7-26-07

[Jennifer Z.]

Hi All!

My name is Jennifer and I have been diagnosed w/ Rhuematoid Arthritis last month. I am 32 and I first started out w/ Raynauds in my hands and feet at 28 which became pretty severe and would occassionally get ulcers on my fingers. Then a couple years later at age 30 I had a horrible pain in my chest and it was so painful to breath,laydown or bend over. I had chest x-rays and nothing showed up so they sent me home. Then it happened again the previous weekend and another trip to the emergency room because I needed some type of pain reliever in which they had not given to me the last time.So they againsaid they had no idea what it was and sent me off. Well it went away for awhile and the third time it cam back I called mt doctor and he said it may be pluerisy and it would be best to see my Rhuematologist for it because it can be related to having Raynauds and there may be other issues. I held off on going for a little bit since I hadn't gotten anymore pain but then not too much later I started getting strange pulling sensations in my calfs shims and thighs..ankles would ache and the bottoms of my feet would burn so as you would guess I didn't get any sleep at night and started to worry about if it was RLS. Well I made the call to my Rhuemi and had gotten many tests done he also took a ANA, Rhumatoid Factor and many others. I test postive for ANA and Rhumatoid Factor. I still need to get all my paper work from him for my records. He had also brough up Fibromyalgia because of the continuos pulling and aches in my muscles all over and I would feel so sick at times like the flu that never goes away. He put me on Hydroxychloroquin to slow the process of the Disease. Then he had put me on Lyrica. I don't know if it really had worked for me though because I was on it for only a month and then all my symtoms went away and thet was that. So silly me I stopped taking it thinking oh it must be the warm weather that made it go in remmision. See I was living in Cinnicinnat OH during that time and git sick in Jan up until all of March...90 days of suffering from this horrible disease. Then weather got warmer my husband and I were getting ready to back our home to get ready to move to sunny st. petersburg FL in May of 2006. Love it here and I thought it would never come back because I am in warm weather but after a healthy, energized and symptomless year (except for occasional sore and achy fingers and wrists which was the norm for me through out my life) I felt as if it would never come back. Then it all started back up again and also in the same pattern whith the so called Pluerisy which I had twice at different times...during that I was praying that would be the extend of it but the in May I ended up with a staff infection and had it for about a month. After I was releived from that all you know what broke loose the pulling achy legs the burning feet the tiered achy arms shoulders and neck. my fingers wrists and knees would get painfull and swell and I have a hard time with my ankles. I also have been getting many low grade fevers which is a sign of infection but I had no infection and that fever will last for days and I will fell like I have the flu forever. Sometimes I can bare it others I just ball my eyes out needing and wishing for some relief.  I have not been working for a month due to this and it may still be  awhile before it goes into remission. I am on Hydroxycloroquin again and Lunesta for sleep (hasn't been working well this time around) and Vicodin for pain but I am taking extreme caution as to what I am taking so i don't become addicted. Doc hasn't gotten anything else for me yet so that's my only choice of a painreleiver right now. I refuse to use nothing!! Can't bare. I am staying positive though and will try Lyrica again. It may have been the wonder drug for me from the binginning and I hope it works this time. I'm tired bored lonely and sick of not being able to do the things I love. I am not a lazy person and I am in shape and used to work out alot. When I go to the pool I feel sick sometimes because of the heat and it's not so good for fevers but I try to get some exercise when I can. I also want to have children someday and I hope my body can handle it...it scares me sometimes. I know I'm not alone out there and there are MANY of you who really know how I feel. I would really be gratefull for one of your comments or advice of what you think is going on and I will be happy to be a shoulde for you to lean on and vent to. We are all being tested in some sort of way but I would rather it be a greater outcome in the end rather than giving in to it and let it wallow me away to nothing. We are all meant to over come these obsticales but we just have to realize it for ourselves. I will pray for all of you tonight and the next and will also keep you updated on anythingthat may be working for me and please do the same. I apologize that this was so long but I had a lot to say!
Thanks for taking the time out to learn about me. I look foward to hearing back from you soon!!

Thanks for your time!
Jennifer 8-06-07