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Most recent Rhumey visit

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Posted 10/23/2012 10:33 PM (GMT 0)
Saw my normal Rhumatologist today. He spent a bit of time with me, and that made me feel good. Yet again, he is agreeing that I have hypermobility. He also said some other things, but as is usually the case with him, I forget what it was that he said. I know that he said I was borderline Lupus, but I forgot to remind him of the hair loss. It is starting to grow back, so I didn't think about it. Apparently, the one diagnosis it has now changed from UCTD to MCTD. I am not sure if this is a final deignosis or not. I asked about the Fibromyalgia, and he hesitated and said that with hypermobility, I am always in pain, I can't sleep and a few other things, so yes, he says it could be considered Fibro. Not quite sure of what to make of it (as in, do I have it or not).

I am being sent to a movement clinic for a tilt table test to see if they can get my blood pressure to drop. He noted that it is pretty low as it is, and he wants to rule out (or figure out) something, but I don't remember what it is. I also am to monitor my bp to see what it is... especially when i get sick and almost pass out. He thinks it is more than my inner ear. He also thinks the jaw pain is from swollen glands. I am thinking it has to do with a tooth. I am going to see a dentist to rule that out. I don't think the Rhumey has all the answers yet, but he is trying. :)

Right now, I just want to go to sleep. Can't do that until 8. *sigh* an hour and a half to go!

Posted 10/23/2012 11:34 PM (GMT 0)
He might be testing you for POTS.
Posted 10/24/2012 12:50 AM (GMT 0)
I had to look that one up. It could be it - that would make sense for what he was talking about. I will admit that I am getting frustrated though. It seems that all the doctors are doing are adding numeroud diagnosis upon the already numerous diagnosises. I wish they could find one that would box up all the rest in one nice neat container. I don't want to have to keep adding to my signature. :/
Posted 10/24/2012 1:48 AM (GMT 0)
Hi, I'm sorry that you seem to be in a diagnosis limbo. If there is autoimmune connective tissue disease going on, it does take a while to sort out symptoms and get bloodwork.

I have MCTD and initially presented with all the classic symptoms...Raynauds, fingers that were swollen like sausages, muscle and joint pain. Bloodwork showed high RNP. Later other symptoms like skin lesions, inflammation of multiple joints...a biopsy determined I had scleroderma.

Each case is differant...My overlap is lupus, scleroderma and RA. Over the years, I've been on plaquenil, prednisone, and azathioprine. I have been on Methotrexate for a few years and it has helped slow down the progression of the disease.

MCTD is diagnosed if you have high RNP antibodies and have clinical features of a few connective tissue diseases.

It is not unusual to be first diagnosed with UCTD...I was until, more and more clinical features presented themselves.

Having fibro along with an autoimmune disease is not uncommon.

I understand your frustration...try to take it one day at a time...hopefully treatment will start to help alleviate your symptoms.

Hugs, Robin
Posted 10/24/2012 2:57 AM (GMT 0)
Thanks Robin.

I did get some good news. He said he does not believe that I have TMJ (the jaw pain that half my docs say IS TMJ) because they did a CT scan in the ER and it looks fine. He also examined how my jaw opened and closed, and it was fine.

It was pretty funny (this is not the first time he has tested me for hypermobility). He asked me if I was double jointed, and I just looked at him and pulled my thumb down to my arm and said: "Does this count?" :) He laughed and said he thought so. He then had me touch my hands to the floor without bending my knees. I can only get my fingers to the floor, but he said it was close enough (or something like that). I have to do those tests for so many doctors. They all wonder how I do it. I always thought *everyone* could do it, so it surprised me when (recently) I figured out that most people cannot.

Post Edited (SoSt9) : 10/23/2012 10:26:56 PM (GMT-6)

Posted 10/24/2012 4:06 AM (GMT 0)
Before my back and knee issues I was very limber. I could put my foot behind my head, sit indian style with my feet on top of my knees, and walk around on my knee with my feet in the same position too.
I can still twist my feet backwards but only one at a time now. (O:
I also can lock my fingers in a position where I just bend the last joint on my fingers. My students loved it and would try their best to copy me.
Posted 10/30/2012 6:31 AM (GMT 0)
It sounds like you could have Ehlers Danlos Syndrome. One of the hallmark signs of EDS is that you are very flexible. I am in my 50's and can still bend over and touch the floor without bending the knees. EDS would explain a lot of your problems. Our DNA does not make collagen correctly making us very bendy and fragile. We are often misdiagnosed with fibromyalgia. Many of us have skin problems with it being able to tear or cut quite easily. It is difficult for us to stand for very long due to our flat feet. We also have dysautonomia problems too.

There can be many other problems with the heart, teeth, TMJ. Good luck with your search, I hope you find some answers.
Posted 10/30/2012 7:53 AM (GMT 0)
The first Rheum I saw said ED. The one now said that it is not, but I do have the Hypermobility (no elastic skin and he mentioned a few other things, but I don't remember what - it was July - seems like an eternity). If it becomes more prominant, I am sure he will reconsider. I am not totally ruling it out either.
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