Need some input.....

[mynap]

I'm a newbie to all this stuff, but I have a very long story..........Recently had bloodwork for a suspected rheumatic disease come back with elevated MCV (102), everything else is normal range. No B12/folate deficiency or alcoholism. The history is: I have been under the care of physician "A" for over 1 year, watching me for a suspected autoimmune disease, but without typical signs. Bloodwork has been pretty normal, until the elevated MCV. I have a lot of bone/joint pain without swelling. This has progressed recently from peripheral joints to spine and neck, and from femur pain at night (episodic) to femur pain/other bone pain after being upright for more than a few hours. It can be excruciating. I also have neurological signs like tingling, ripping/tearing/feeling of motion in the tissues (legs mostly) to visible muscle twitching/cramping. This has been in the extremities in the past but recently has become all-over. I have Raynaud's, or like phenomenon, splinter hemorrages, episodic high blood pressure, swelling of lymph nodes and some kind of overwhelming fatigue. Most symptoms are episodic, except joint pain/raynaud's: on about a 6 week schedule, one good week, followed by one week of increasing fatigue, 2-3 weeks of horrible pain and dyesthesias, then one week of improvement and back to a good week. This is just for background, not expecting a diagnosis here.

The bone pain, severe raynaud's and fatigue, and now the elevated MCV are making me concerned about a possible bone marrow and/or red blood cell problem. (Some genetics here from my father, but I wasn't paying attention to details when he was sick/dying so I don't know what type). My blood markers for rheumatic disease have been normal. This past year of problems was prefaced by 5 years enduring a wrist injury that has never healed, and an unexplained minor fracture in the other wrist.

I thank you for reading to this point I know it's a long story.......My questions are: Does this sound familiar to anyone else's story of bone marrow disease, or a hemolytic problem maybe? Can bone marrow disease mimic rheumatic illness? The people I have met with various rheumatic diseases seem far more functional than me; my fatigue is most severe and impossible to ignore.

I also have a doctor question: I have deliberately stayed with doctor "A" through this with whom I have a great rapport. He seems to have held back on sending me to specialists to see how this disease would develop (I was ok with this). Recently I was forced to see doctor "B" filling in for him, and have been put through a ton of tests, revealed the elevated MCV, and am being referred to a rheumatologist. I think I'm being discouraged from going back to my old doc, maybe because he hasn't sent me off to a specialist yet. I like the new doctor but I feel secure with the history I have with my old doctor. He also helped in the beginning when no one else was listening, so I feel loyal. I really don't have much criticism of him. I do think I should see a specialist but I don't want it to be a waste of time (travelling to a large center). I'd be just as happy having a bone marrow biopsy done at the local hospital, but doctor "B" doesn't think this is necessary. I feel that doctor "B" is no further ahead in figuring this out either and really doesn't know what to do with me. Dr. "B" doesn't want to worry about bone marrow disease yet. We're going to just continue watching & waiting for now. As confusing as all this sounds, it's entirely appropriate given how I feel. Thanks for reading. I feel like I'm about to be put through a medical meat grinder that may not yield any answers. I guess the question is do I stick with my old doctor or go with the new gung-ho doctor? (I don't like changing doctors at all and am now having a really hard time evaluating them both). I am well adjusted now to living with my disease and feel far from the anxious patient I was a year ago; just don't want to go through a lot of unnecessary stuff to get no answers. Any tips on objectively evaluating doctors when you yourself do not have a medical degree?

Any helpful input appreciated.

[mscrzy1]

Let's see. You're not completely off your rocker wondering if it could have some hematological effects. I was dx with a bone marrow failure disease when I was 19 without any known cause (which is common). Since then, I have been in remission, although with lower normal blood counts and a high MCV. Recently, I've started to see a drop in my blood counts again and this recent drop has been correlational to my development of reynaud's and my increased fatigue and bruising (not consistant with my count reading). I recently saw a bone marrow specialist who really thinks that my initial development of SAA was triggered by one or many autoimmune diseases. He is now adding a rheumatologist on board to my health team and plans to discuss with him/her the idea of running a barage of more tests. So, I guess my answer to your question of whether rheumatology issues could be related to hematological issues is "yes, possibly". I'm hoping to find out anyways.

As for the dr. issue. I'm not sure. It's so important to have a dr. that you feel you can trust and have a good repoire with. Maybe you could discuss with Dr. A what Dr. B is suggesting and see what Dr. A thinks. Let Dr. A know your thoughts about it and see what he says.

[mscrzy1]

Have they, by chance, tested you for lupus? I've been researching it myself because of my reynaud's and you seem to have many of the symptoms that I've been reading for lupus. Just a thought...

[mynap]

Thanks for your reply. I have considered the lupus diagnosis. I recently read an article about an connection between marrow disease and lupus, which lead me to this forum when I received the high MCV result. Maybe the rheumatologist will find out..........something.......

I'm walking around looking healthy but very unlike my former self. Beyond scared at this point. I'm following in my father's footsteps healthwise, and would be so not suprised to receive a diagnosis of a blood disorder at this point. At the mercy of my doctor(s), bless them, I'm sure it's such a tough job daily; and then something weird walks through the door.........so happy I found this website. Thanks again, it's lonely out here in the disease-thing.

A, having mynap.....

[mynap]

Angie, on second thought, does your Raynaud's seem atypical? Mine does. Sometimes I wake to an attack in the middle of the night; no cold/emotional stress. It seems to involve my hands right up to the wrist, and feet and legs. Has even lasted 10-12 hrs/attack. Seems weird based on what I've read; I think there is something else amiss.

I did ask Dr. "A" to review my file again......thanks. A

[mscrzy1]

Hmmm.. Your reynaud's sounds very atypical. Mine is classic reynaud's. Anytime I'm outside with temps lower than 70 degrees, I need to wear gloves. It doesn't affect my toes, just my fingers. It will start in my pointer fingers and then move to my middle fingers. My fingers will go numb and turn white. If I don't warm them up soon enough they start to turn blue. It alternates hands depending on which hand is exposed to the cold. I also can't hold a cold drink without a reynaud's attack. I get some pretty weird looks walking around with gloves on all the time.

I hope you're able to find a dx or a cause to your symptoms soon. It is very frustrating being a medical mystery. We can all relate to the cringe you feel inside when your dr. says words like "hmmmm" or "interesting". Never a good thing.

[mynap]

Yeah, the gloves-thing. Pretty weird when you're wearing gloves and everyone else is in shorts and t-shirt.... The doctor-"hmmm" ; not a good thing. You are so right.

I have bruises after a really bad attack. I do not think it's Raynaud's at all any more......

[mscrzy1]

Wow, bruises? I do have excessive bruising, but not directly from one of my reynaud's attacks. I agree that you may have something other than reynaud's going on there. That just seems very strange. And my attacks stop as soon as I'm able to warm my hands under warm water. I've never had one last 10-12 hours. Wow. I do know that it can affect toes and feet as well as fingers and hands, though, I've never had an issue with it affecting my lower extremities.

[Chirley]

Hi,

I don't know much about them but what about cold agglutinins?

Regards

[mynap]

Hi; I read up on cold agglutinin disease. It definately fits. So far I haven't been checked for this, or any of the more rare diseases. I'm hopeful that when I get a booking with this next rheumatologist that these tests will all be done. All the general tests for rheumatic disease have been negative, ie ANA, rheumatoid factor, ESR. Thanks for the suggestion........A. Trying to be positive about the appointment coming up.