Thursday, July 31, 2014

Next steps?

I've been to the rheumatologist. We're still waiting on test results, but the doc didn't think it would be likely we would find anything.

Nuerology appointment in November.

In the meantime, I'm feeling a bit fed up with seeking answers - again... and still without any hope for an effective treatment.  Funny thing. Even with conditions with no cure - they usually at least have some ideas of treatments to help manage symptoms. I can have the same symptoms - but because I'm undiagnosed - then I'm not eligible for the same treatments.

They did suggest getting a lump biopsied to see if we can figure out what the lumps are.  Not the end of the world if we do that. It's just that my issues are bigger than the lumps themselves.

sigh.

So, my current plan is to restart the MTHFR treatments... slowly and surely. See if I can figure out if things worsen or improve.

Thursday, July 24, 2014

Another health crash - trying to tough it out

About six weeks ago, my right bicep started cramping.... I had a superficial (very minor) blood clot in that arm after my gall bladder surgery a few years ago - which never went away. I figured I should double-check to see if the bump is still there and still the same size. It was. BUT about a quarter of an inch away was a second bump.

My first thought that struck me was that I might have developed a second blood clot. If I had thought it was a DVT - I would have gone straight to the ER. But it felt just like the other bump I had... which being a minor superficial blood clot and I could literally feel the lump right under my skin.... I decided to take some aspirin, use some warm compresses and take a wait and see approach.

WIthin three days, I suddenly had a couple more bumps under the skin on my left bicep. Hmmmm... if these really are blood clots, that would be a sign of something quite wrong. But, they are highly unlikely to be blood clots in two different arms spontaneously showing up. So, I called the doctor. A couple of trips to get ultrasounds and the US doc claims they are unlikely to be blood clots, nor cysts... nor anything that they can recognize as abnormal tissue.

Next step was dermatology. At this point I was up to 14 lumps - all in my upper arms. But now I'm getting pain in my legs, torso, neck, etc, even though the bumps are localized primarily in my arms.  Dermatologist went with angiolipomas... which are painful (angio)  benign lumps (lipomas). If I was lucky, they would hurt for about six to ten months, not respond to anything, or I could have surgery to remove them.  Per him, since there would have to be about eight incisions, he wanted me to go to a general surgeon for the surgery. Per the General Surgeon I saw next, they were NOT even remotely possibly angiolipomas and part of the reason the dermatologist didn't offer to do the surgery is that he wouldn't want to get blamed for operating and not resolving the problem.

Went back to my regular doctor and now we are waiting on rheumatology appointment. The lumps are showing up now in my arms, legs, trunk, and underarms. The pain though can appear anywhere. There's a general whole-body ache that preceeded finding bumps in each area as it spread, so did the bumps, only now it's whole body - the bumps aren't quite whole-body yet... close, but not lower legs, nothing in my feet or hands... sigh. But, even worse... there's a shooting pain that will hit in a variety of spots. It flares hard and fast and almost strong enough to cry out, within 20 minutes it tends to fade back to the aching. Suggestion has been made that this is nuerological pain. I don't know, I just know that it's hard to cope with it. None of the recommended pain killers have provided any relief.

In the meantime, I've learned the following.

1. The lumps don't stay. I can count 14 at one point, the next morning there might be 8, eight hours later there might be 24, the following morning 6. Sometimes they stay.... there's almost always about 6-10 lumps in my arms consistently... but if I mark them with permanent marker - some of them will be in the same place the next day, others will have gone, but new ones (or they moved) will appear a quarter inch or so away from the mark.

2. The more I try to do physically, the worst the pain gets. Even knitting (sob) triggers more pain in my arms.

3. The ONLY thing that seems to help is application of heat. - So I'm spending my days and nights in bed with a heating pad being moved to the next spot that has the worst pain... with a few breaks to take long baths (and I hate baths) but the heat application makes it easier for me to sleep.

The doctor did put me back on coumadin, although honestly it's highly unlikely that these are truly blood clots. 1) they didn't show up on US 2) they move/dissolve way too quickly 3) if they are truly moving - then I would have more serious issues with breathing by this point.

But blood thinners will at least protect me from my blood clotting disorder while I remain bedridden to deal.

I'm on medical leave from work right now, but all I can hope for is that the rheumatologist might have a treatment suggestion and/or my condition goes through another change and I can experience some remission. I find that it makes me feel very defeated.

I stopped ALL methylation treatments as well as temporarily stopping the thyroid treatments. I stopped adding a ton of salt to all my dishes. I've checked with the MTHFR specialist to see if there's anything obviously outstanding that might explain my new symptoms based on what I'm doing... but nothing came to mind. All the doctors I've spoken to, with the exception of the one who I no longer trust who suggested angiolipomas... have repeatedly told me that my symptoms are exceptionally uncommon and make no sense.

I question whether or not my 'ramping' up my methylation process after it having been in such bad shape my whole life has caused an influx of something I'm having a systematic reaction to. If so, backing off of the methylation support should allow my symptoms to improve (nothing yet, but not quite ready to give up on the experiement). If the symptoms do back off and restarting the process makes it worse - then I know to dig deeper into that process.

So, in the meantime, I'm mostly doing a wait and see approach.