No inflammatory markers

[JoannaP79]

Hi everyone,

Over Christmas I developed ulcerative colitis. If I try dose down on steroids it comes back. I've started cellcept. I have seronegative sjogrens and Ank Spond and so many issues. I am basically falling apart, body is wasting and I now have scoliosis as well as an unstable neck.
I had a PET scan recently and despite everything it only showed activity over my thyroid. I've had a third round of eng and nerve conduction come back clear. My neuro will not entertain the possibility of another muscle biopsy because of this. Had one of triceps a year ago but think thigh would have been better.
So basically every mri and every scan shows no inflammation. Blood tests also always clear of inflammation. But this was even when I had moderate colitis.
I have significant damage in my neck yet nothing inflammatory cones up. I have small fibre neuropathy everywhere and autonomic damage. Trigeminal neuropathy more recently.

Can autoimmune damage completely fail to show up as inflammation?
I know I've spoken with others about this before but can every single test come back clear yet muscle biopsy showed something all other tests didn't.
I really don't want a second one as I will have to find someone willing to do it. No one wants to do it with consistently negative mri and nerve conduction and emg. When the eng needle went in the pain was so bad because of lack of tissue/ damage and has got worse over time. I cannot for the life of me comprehend how it came back negative.

[irish]

I am quite confused. If you have ulcerative colitis you have autoimmune disease which is an inflammatory process. It really doesn't matter what your blood tests show as a large portion of people are seronegative. The doctors should be aware of this.

Also, I had a muscle biopsy in 2004 and it had to be done under anesthesia as the muscles need to relax. It was done in the day surgery by a doc who was proficient at doing these biopsies. They use the thigh muscle and go quite deep. Mine was negative. If you are disappointed with your doctor it is time to find a new one who has a different perspective. If Cellcept isn't helping there are other medications out there.

If you are diagnosed with neuropathy you may want to have a neurologist check you out and order medications. This is something that people with Sjogrens get but it required different medications. I am rather confused about your diagnoses and treatment. Maybe there is something else you could add.

There are also other meds for the colitis besides steroids that works well. You can do a search on line to get the name of some of them as I don't know them off the top of my head. Good luck. Irish

[JoannaP79]

Hi Irish, I think the problem is that every consultant is underestimating the severity of the situation because scans and bloods never show any active inflammation. All muscles have been scanned by mri and now PET but do not show anything. For this reason I feel they will not pursue it further. My neuro is trying to help but had to admit that he is unclear what's happening ref the wasting and that he is not an expert in sjogrens. The only neuro I have seen whom is a sjogrens specialist I did not like. But my rheumatologist won't look any further into things either. Again, because she admits she's confused by what's happening. Basically it's the fact they do not know enough in this country. My rheum dismissed sjogrens for 3 years when I kept bringing it up.
I am basically wanting someone to try figure out why my body is wasting and no one is. Because my nerve conduction and eng and mris are clear. I feel I have to pursue the muscle biopsy of my thigh. I think with actual proof of something affecting muscles I may be taken on by someone. No one is trying to help. I don't know which is driving the wasting and I can't take both cellcept and a tnf blocker. If I could I'd take both.
My rheumatologist gave me cellcept grudgingly. I ask about sjogrens and she doesn't understand it. The neuromuscular guy who admitted he was unsure what was going on won't lead on treatment and passes me back to rheumatology. He again doesn't understand it. I think I will have to pursue the private neuro who I didn't like much for a muscle biopsy of leg. No one else will do it.
Can I ask the reason you pursued the muscle biopsy Irish?

[irish]

I don't even remember why I had the biopsy but am thinking that it might have been because I had so much pain in my thighs and other parts of my body. I had some muscle spasms also. I did end up getting diagnosed with myasthenia gravis and 3 other autoimmne diseases.

It does sound like the doctors know very little about autoimmune diseases. I have trouble with doctors like that because they have access to info that would increase their knowledge a lot. Internet and then they could  call specialists all over the world and talk for awhile. They could also text and email. Good luck with your qwest. Irish

[MAT51]

I don't even remember why I had the biopsy but am thinking that it might have been because I had so much pain in my thighs and other parts of my body. I had some muscle spasms also. I did end up getting diagnosed with myasthenia gravis and 3 other autoimmne diseases.

It does sound like the doctors know very little about autoimmune diseases. I have trouble with doctors like that because they have access to info that would increase their knowledge a lot. Internet and then they could  call specialists all over the world and talk for awhile. They could also text and email. Good luck with your qwest. Irish

I so agree with you Irish re your query about why on earth these doctors don't do their research and contact each other by phone or email? And I have found that if I have done more research and they find this out they dislike it very much and complain I have "heightened health awareness". But of course, if all this supernatural stuff is going on in our bodies 24/7 we will do our research.

Jo I've been knocking around forums for RA, Lupus and other CTDs and autoinflammatory diseases such as PsA and AS. Many with rheumatic diseases don't have raised inflammation markers. I do but they haven't got me very far with my neurologist lol!

[trc1962]

I also am seronegative and getting treatment is a challenge indeed. I also have neuropathy and my blood rarely shows much beyond raised crp. The neuropathy only showed up once in 2004 and they never again could document it (small fiber and autonomic). Hope all us seronegative people could find better informed doctors.

[SjoGirl]

Johanna,

I can relate. Have you by any chance be diagnosed with osteoarthritis or degenerative disc disease? Both could cause some of the issues you are experiencing, particularly if a disc in your neck is compressing nerves. This is not an inflammatory process, but I know from experience is painful and impacts your quality of life.

I don't know what might cause the wasting.

[vrystaat]

I find this attitude amongst MD's very frequent. One of the top three SS Experts misdiagnosed me!
I have heard complaints about many so-called Sjogren's Specialty Centers from the Midwest, to the east Coast and in the West.
One of the main problems is that SS is very difficult for Rheumatologists to manage. There is no cure, and many of us are sicker than heck.
At the major University in California that I go to, the Chief of Staff gives it's Rheumatologists only 20 minutes per patient. That's how much they care.
There are two methods which may help:
-   Do all your own research and paste on this forum. Be your own Physician; we know more.
-   Be noisy, and complain to the State Medical Board. In my experience, this helps only a little.
    I was abandoned by a Rheumatologist with no notice, after 3 visits. I complained to the State. They refused to act!

When I read about something that may help me, I ask the Doctor. For example "Do you think Retuxan could help me?"
For our myriad aches, pains and other symptoms, find a very good GP. I am very lucky to have found one. She prescribes me Prednisone for flare-ups, Restasis for my eyes, Plaquenil, and Tramadol for pain.

I hope this gives some perspective.