[cyclelops]

I just wanted to say, I was injured in an accident in 1987. Given a diagnosis of fibro in 1990. I had a clear cut case of Lyme in 1994.

Since 2000 the doctors have argued over my minor salivary lip biopsy, was it Seronegative Sjogren's or not.

In 2004, I discovered I had small fiber neuropathy found on biopsy and autonomic neuroapthy as well.

This year, my nail got ugly and white and lifted totally up off the nail bed. It is not a fungus. It is oncholysis....most often associated with psoriasis. You can get psoriasis in just a nail and have one of the Seronegative Spondyloarthropathies.

Spondyloarthropathies are entheseopathies, or enthesitis....ligament problems, that can feel like arthritis or muscle problems. Of course, every trigger point for fibro is a ligamentous insertion. You could conceivably be diagnosed with fibro, even if it is a spondyloarthropathy. No test will diagnose spondyloarthropathy. You just have to wait until certain things show in your body....waiting, waiting a very long time.

It is very hard to get diagnosed with a seronegative spondyl. If not for this gross fingernail, I would not even bring it up to my doc. Interestingly, some of the drugs used for Sjogren's such as Plaquenil cause psoriasis to manifest. It also explains so many of the huge issues I have dealt with including why I could not tolerate the drugs always given for fibro, such as SSRIs and tricycylics----psoriatic arthropathies come with polymorphisms in the enzyme in the liver that metabolizes these drugs, CYP2D6.

This has been a long and frustrating journey. I still don't know what I have but now it is either seroneg. Sjogren's OR psoriatic spondyloarthropathy or psoriatic arthritis with systemic problems. It will likely take a year to figure out this new development.

I have had to shove abstracts and medical notes under every doctors nose. Then they have the 'Aha' moment. It is frustrating.

[Twinkletoes]

Awwww, ((((cycleops)))). I hope you get everything all figured out very soon.

[warbelsnap]

Cycleops--I am so sorry to hear about your situation. To me, it is so riduclous the amount of test, poking, proding, etc we have to go through no matter what you have wrong with you. For those who have cut and dry symptoms they get a diagnosis quickly. Throw one or two other symptoms in, and the doctors are at a loss. I just don't understand. I will keep you in my thoughts and prayers. Just remember, we can only live 1 day at a time. We are all survivors. Please keep us informed. Merry Christmas and lots of gently hugs to you.

[cyclelops]

Well, thank you all...I could be in half of these forums....I just gotta find where I belong.

If I don't get my big feet in some galloshes and gallop to the stores to buy gifts for my ever enlarging brood....(next grandchild on the way soon), I will be in the dumpster. no matter what disease I have or don't have.

[warbelsnap]

I did most of mine on line this year because of my stuff. It was just easier. Most of the time I don't leave the house more than 2 to 3 times a week because of the pain. So it was only logical for me shop on line. I may do it again next year because it was so easy, I didn't have to fight the crowds, wait in line, etc. It was awesome. I would recommend it to anyone. Merry Christmas.

[cyclelops]

Well my advice to any one with Fibro, is, google Seronegative Spondyloarthropathy.....it bears an awful close similarity to Fibro. There is no actual test for it, but Bone Scans will usually show a pattern. Enthesitis or Enthesopathy is inflammation of ligaments, which are all trigger areas for fibro...again, seronegative, hurts like the devil. Rib cage pain and Sacroilliac pain are two of the most common sites, but you can also get bursitis in your hips, knees etc. Sometimes they treat this with the 'mab' drugs but you have to make risky choices. There isn't all that much they do besides manage pain except for the biggie, preventing joint misalignment and future joint deformity and arthritis...(so I have splints and AFOs) When the ligaments don't keep bones in place, the joints fail eventually.

You can even get it in just your hands.

If any of you have psoriasis or nails that are turning white or lifting off...PM me.

Then in addition.....

If you have not had a skin biopsy for small fiber neuropathy, consider it. (Mine was abnormal)

If you have not had a muscle biopsy, consider it. (Mine was abnormal)

If you have not had a full autonomic work up, ask. You have to go to an autonomic center....this is an extensive test. (Mine was abnormal)

If you have not had a minor salivary gland biopsy, ask. (Mine was abnormal)

It isn't fibro, until all that comes back normal.

You know who found this??? A cardiologist who said I recovered abnormally from a stress test....after I had 4 of them who said things were fine.

I have diagnosis of Sjogren's, Lyme, Autoimmune Autonomic Neuropathy, small fiber neuropathy, sensory neuropathy from the small fiber neuropathy, gastroparesis, hmm, gee, I think that covers it........and I bet my farm that Spondylarthropathy is coming next. I think it is all one disease.....all from a history of fibro that I would still be sitting with, had I not pursued this. I also carry a gene mutation that does not allow me to take any SSRIs, tricyclics, antidopaminergics among others.

If any one wants more info, you can PM me.

Have a peaceful, painfree holiday.

[warbelsnap]

Cyclelops-that is a lot of info and very useful. Once again, I am so sorry for what you are going thru. My wish for you is too have an awesome painfree Christmas. I will keep you in my thoughts and prayers.
All-My hope for ya'll is to have an awesome painfree Christmas also.

Sending lots of gentle hugs to each of you.

[mistiis]

...thank you so very much for this information... ...I fully intend to pursue this after the first of the year, and when I get around to it, I will pm you. Once again, thank you very much. I can't believe how many of my symptoms correspond to some of this. Can I ask you if you have ever had a test on your ATP levels? I think, it was called something like cyclic amp? Not sure, it has been a while since I had been having those tests. My ATP was below normal, and then low normal. This has to do with the energy combustion within the muscles. I am very interested in those biopsies. And would like more info. Please pm me. I will google those terms you provided and do some research. I can't take the tricyclics either, and I am trying to remember what the other class of meds that you mentioned is comprised of. I will google it. I am allergic to many meds. I have several joints that are unstable. Shoulders with multiple dislocations. And now a thumb...LOL...also an unstable hip. Rib cage pain is a new one that started several months ago. I also had a heart problem pop up. My last lyme's, many years ago, was negative. That sad thing, though, is that there is nothing that can be done? But, it would be nice to 'know' finally what the heck is going on. I am glad you pursued it. That takes a lot of energy and effort.

What are the mab drugs? I am just starting to have problems with my nails. I am getting to where I can't wear anything but cotton close to my skin or I break out, or just itch intensely. Again, thank you.

[cyclelops]

Sounds to me like you had a muscle biopsy?? Have you been diagnosed with mitochondrial myopathy? I too, had a muscle biopsy, however, mine was neurogenic myopathy, within a year, I tore a rotator cuff.

My rib cage is sore at the enthesis. That is where the rib joins the sternum and the rib joins the vertebrae. Those are ligaments.

Sacroilliac pain can be ligamentous as well.

I also have some heart changes, with bradycardia, and an enlarged left atrium.

Genetic polymorphisms in the CYP 2D6 enzyme can cause problems with drug metabolism. There is a chart, if you google cytochrome P450 flockhart, it will come up and you can see what drugs are in what enzyme family. Tricyclics, SSRIs and antipsychotics, one of which they are promoting for depression (Abilify) are in this category. I have spent 10 years studying this and what this has to do with disease. CYP 2D6 comes up in relationship to Spondylarthropathies, and also Parkinson's, however, a causal relationship has not been established.

One thing to consider, as you age, things do degenerate to some extent and abnormalities of some kinds are found in perfectly healthy people, however, YOU know if YOU are not feeling well.

Seronegative Disease is very difficult to find. There are lots of things out there...thousands of things, and really, I had to do most of my own research. I was lucky to be at an academic center with an interest in my case.

The Neuro.wustl site has much good info.

If I can help in any way, just PM me. I don't always check the forums. I am in the PN forum the most, as I said, I have a hunch, I may be adding a new category....whatever....I have peripheral neuropathy, sensory and autonomic, with some kind of connective tissue disorder that is quite painful and making my nails turn white and fall off (no they are not fungal).

Happy Holidays to all, and to all a good night.