My strange affliction

reply to post by Glycon


same finger on both hands.. I wonder if there is any significance in this? Doesn't the ring finger have the lowest nerve response of all the fingers?
and this reference comes again:

en.wikipedia.org...

Etymology

According to László A. Magyar, the names of the ring finger in many languages reflect an ancient belief that it is a magical finger. It is named after magic or rings, or called nameless (for example, in Chinese: 无名指, unnamed finger).[2] In Sanskrit and other Indic languages, the name for the ring finger is Anamika ("nameless").[citation needed]

reply to post by Dustytoad


It was also in my pinkies and middle fingers though. The ring fingers just took the most damage from it. What is you train of thought though? It seems like you have at least one theory.

reply to post by Dustytoad


There was a time that I literally almost never got sick. I would get a bug maybe every couple of years. I had never been hospitalized, never took medication, healthy as a horse as my dear old dad would say.

Then one day something changed and I suddenly had all these weird symptoms, major fatigue, and just felt off.

It took two years of seeing dozen or more docs, various tests, scans, etc before they finally figured it out. It was only when the joint pain finally appeared that my blood work stopped coming back normal.

I was also diagnosed fibromyalgia, a diagnosis that I have never felt was right, and, have never agreed with.

Your immune system basically mistakes healthy tissue for an infection and attacks it.

I would suggest for OP to visit with a Rheumatologist and get repeat blood work and an MRI of the hands.

Blood tests should include:

Rheumatoid factor, Anti-CCP antibody, C-reactive protein, Sed rate and a standard CBC to check for anemia and an elevated white blood cell count.

I have a strong intuition that RA is the culprit. RV, is a rare complication that affects RA patients. Rheumatoid arthritis affects 3% of the population with a rate of 1% out of those with the complication of Rheumatoid Vasculitis.

If this is the case, it's so rare that a doc might over look it just because they have never encountered and not had any experience with it.

Originally posted by Glycon
reply to post by Dustytoad

 

It was also in my pinkies and middle fingers though. The ring fingers just took the most damage from it. What is you train of thought though? It seems like you have at least one theory.

I don't have one line of thought really.. If I was better versed in medical theory or biology I would be linking those in too.. I've just had certain experiences and it's all I have in my tool box at the moment.. I like to just throw things out there, and maybe something could be right, but that's just how I am..

I don't need to be right or prove anything.. Just offering up ideas, as random as my mind is I am sure most are unrelated..

If you make other threads that fit better to my way of thinking I'll expand upon that there, but this issue seems medical even though they don't know what or how..

I mainly agree with the post above mine. the way you describe it and the pictures all match.. Only thing missing is confirmation from a qualified doctor.

reply to post by daryllyn


I have been to specialists and had multiples of those tests done. I've been from the Mayo's Clinic to University of Chicago and everywhere in between, all running every test in the book and coming back with nothing. It's really bothered. me. Same tests over and over for almost 3 years with no avail, every so often mixing in a new one due to a theory and having no luck.

reply to post by Glycon


By the way did your natural choice of pain medication have any apparent effect on the growth of whatever this is positive or negative? If I do have any line of thinking I would say I bet that would help at least slow it down.

reply to post by Dustytoad


It did. It seems to slow it down, sometimes even halting it completely. The reason I turned to what I did is because every medication they tried, and I mean any, Ibuprofen to Penicillin just seemed to make things worse. It's almost like my body is trying to push me back into a more natural way of life.

reply to post by Glycon


I know. I have been there myself. It took over two years of doc after doc, test after test, and repeats of tests until my blood work finally started showing something.

The waiting, the being dismissed, the not knowing; it's miserable. I started to believe that I was imagining it as the worst docs I saw had suggested. It was damaging.

I have been there and I know how it feels (minus the lesions of course) to not have any answers.

Just don't rule it out the autoimmune idea, because, tests results can change over time. That's how it happened for me.

I hope you get an answer soon. Good Luck.

As far as that against the T&C thing you mentioned for pain, it actually DOES slow the process of RA and other things and has natural anti-inflammatory properties. Its helped me a lot.

reply to post by daryllyn


Id recommend keeping up on the pain medication, and also make sure you're getting a lot of anti oxidants.. Vitamin C and E are good ones.. Oxygen causes inflammation if it's not bound to anything.

Thank you all, I'll try the various things everyone has posted and see if there comes a change. I will be sure to keep you all posted.

Get a pelvic x-ray. See if you have sacroilitis. That is the only difinitive confirmation for a disease that is also in the seronegative arthritis group, but rarely considered in young people. A blood test for hla b27 can tell if the gene is present in your blood, but oddly enough, people can have the disease with OR without the positive blood test. Odd, right?

I am positive for the disease, confirmed by mri of the pelvis, showing bilateral sacroilitis, which as I said is a confirmation of the diagnosis. The disease is strongly associated with forms of arthritis of the spine, but also skin disease. Most doctors will not even look for it in people under the age of 40-50. There have been confirmed cases as young as 8 years old.

en.m.wikipedia.org...

reply to post by Libertygal


Ankylosing Spondylitis?

They ruled that out for me, but, I have inflammation in my SI joints from RA though, and, since my arthritis didn't read the textbooks, inflamed SI joints were one of my first symptoms, which goes completely against the 'rules' for RA.

Funny how that works.

Originally posted by daryllyn
reply to post by Libertygal

 

Ankylosing Spondylitis?

They ruled that out for me, but, I have inflammation in my SI joints from RA though, and, since my arthritis didn't read the textbooks, inflamed SI joints were one of my first symptoms, which goes completely against the 'rules' for RA.

Funny how that works.

Yes. AS. I don't understand how they can rule it out if you have sacroilitis. It is the ONLY confirming diagnostic tool for AS. Therefore, you are positive. As I said, hla b27 can be detected, but not everyone with hla b27 gets the disease, and not everyone that gets the disease has hla b27. AS is often very alike symptomatically, to RA. But, you will be negative for RA factor, leiden factors, etc. The only positive sign is sacroilitis.

If you are positive for sacroilitis, then you have either Reiter's or psoriatic arthritis. Both of these are grouped with hla b27 antigen, and AS. The links to both are in the original wiki link I gave above, however, you can do further research.

In the meantime, do more on AS, and it's background, as I strongly believe this is your link, especially since you confirmed positive sacroilitis.

www.nhs.uk...

A definite diagnosis of ankylosing spondylitis can usually be
confirmed if an X-ray shows sacroiliitis (inflammation of the
sacroiliac joints), and you have one of the following:

at least three months of lower back pain that gets
better with exercise and worse with rest
limited movement in your lumbar spine (lower back)
limited chest expansion compared to what is
expected for your age and sex

reply to post by Libertygal


I am RF and Anti-CCP positive, which is why they diagnosed me as having RA and not AS.

The SI joint isn't a typical joint affected by RA, but, since it has a synovial membrane, it can become inflamed.

I also didn't have any manifestations in my spine apart from scoliosis and slight, age appropriate, degeneration that they said was normal and on the mild side.

Originally posted by daryllyn
reply to post by Libertygal

 

I am RF and Anti-CCP positive, which is why they diagnosed me as having RA and not AS.

The SI joint isn't a typical joint affected by RA, but, since it has a synovial membrane, it can become inflamed.

I also didn't have any manifestations in my spine apart from scoliosis and slight, age appropriate, degeneration that they said was normal and on the mild side.

You don't have to have manifestations in the spine in AS. In fact, in women, it more typically affects the SI joints, then hips, knees, and elbows. Besides, no one said you cannot have both. I would definitely ask for an hla b27 in your case, because if you test positive, and are positive for sacroilitis, then you have, I think I read, a 75% chance of being positive on the blood test alone.

Having RA and SA together may well afford a change in your treatment that could be beneficial to you in preventing long term issues later in life. I only wish that I had been diagnosed sooner, as a delay in diagnosis caused inumerable issues for me.

I have severe hip pain, and because of back problems, I can't sleep on my back. Imagine sleeping on your side with inflmatory hip issues. I wake every hour and a half or two to flip to the other side. Laying in my back makes my sacroilliac joints feel like they are dislocating, they have become so seperated.

From your picture, you look young. Young enough to get a second opinion and to make changes in your treatment now that will affect your quality of life later down the road. If you have hip, knee, or elbow pain, I would certainly seek a second opinion, or at least ask about an hla b27 test.

polymyostosis

reply to post by Glycon


Take Curcumin capsules, Apple polyphenol capsules,apigenin capsules and drink rosehip tea or juice.

These will prevent inflammation

You can also try rubbing Arnica oil into any any area where you have these problems

I've been looking into what everyone has said, as well as a few unorthodox ideas that have popped into my mind. Since I've created this topic, it has returned in my right middle finger but different than before. It is now white (not the "skin color" but white as in snow.) with a slight purple tint. There is no feeling in it what-so-ever, but still active blood-flow. I attempted a "prick test" with a sterilized needle, blood flowed normally. It really is an ever more puzzling affliction. There has been no inflammation or stiffness and as I stated before, everything is normal except for color and the "numbness". Like when you have a "dead" nerve. It moves normally and everything.