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Well, I haven’t updated for a while and I apologize for that. The Mayo Clinic visit is a long story- one perhaps not posted on the internet- but it has led me to start a new drug- which seems to be helping.
My RBC count this morning was 10.7 up for 9 a week ago (when I had a transfusion). This is VERY impressive. Here is to hoping the medicine continues to work and that even without a diagnosis this is the beginning of a permanent solution.
xo,
B
Hi All-
Well fed up with the unknown I thought I’d give the Mayo Clinic a try. A family friend pulled some strings and got me in quickly and so next week Momma-Ford and I are off to the wonderful land of Rochester, Minnesota. With any luck there will be news to follow.
b
Well, my doctors still don’t know what is wrong with me, and have ruled out vasculitis for now- which is both a good thing and very frustrating.
I had another bone marrow biopsy yesterday (boo!) and the preliminary results show that my marrow is the same as the last time the test was done in the fall (which is good news).
I’m going to do a trial run on a immunosuppressant and see if that helps at all. It is a bit of a shot in the dark- since we don’t know what is wrong with me- but it could help.
xo
B
Had another blood transfusion last week and then spent a lovely weekend in the country relaxing. Back to the doctor Tuesday and Wednesday so hopefully I will have a real update later this week.
B
Well, last week I got some frustrating news, which was that my hemoglobin at slipped to 7.2. Dr. J. quickly got me set up for a blood transfusion and two units later I was feeling much better. Thanks J-mo and Mom for keeping me company!
My blood work is also now showing all sorts of antibodies, which is actually good news (though it makes it hell for the blood bank to find a match for me) because it gives the doctors more hints as to what is really going on.
The newest theory is that I have vasculitis and we are planning a nerve biopsy, down by my ankle, in the next week or so to confirm. Vasculitis is treatable, but the treatment is very harsh, so we want to make sure before we do anything.
I’ll keep you all updated. While the drop in hemoglobin is frustrating, since I’d gone so long without a transfusion, I’m hopeful that the new symptoms will lead (finally!) to a conclusion to my days as Dr. J’s medical mystery.
Hi all-
Sorry I haven’t been updating but there hasn’t been much to say. I’m on the beginning of month three of my drug trial- and you usually see results between 3 and 6 months. So if this wonder drug is going to do the trick I should start feeling better very soon.
In other news my hemoglobin has been hovering between 8.5 and 9.5 which is pretty decent – so while I’m not feeling like running a marathon, and ironically my doctor keeps reminding me not to, I feel pretty good.
That’s all for now,
B
Not really about MDS but an interesting look at drug trials: http://www.huffingtonpost.com/johanna-smith/an-animal-advocate-explai_b_171844.html
But I don’t feel like talking about this week’s doctor conversations.
Soo…So I’m re-blogging this meme, which is pretty rad. It’s a cross between “25 things” and the “Random Ten”–you put your music player on shuffle and the songs that come up are the answers to the questions.
1. What do your friends say about you?
“They Love Each Other” Jerry Garcia Band
2. How would your coworkers describe you?
“Neighbors” Rolling Stones
3. How would you describe yourself?
“The Message” Bela Fleck and the Flecktones
4. What do you like in a romantic partner?
“Bad Medicine” Bon Jovi (hey I’m from Jersey) Read the rest of this entry »
I know- I promised I would update y’all on the site and I have been slacking. But the truth is there isn’t much to tell. Still seeing lots of doctors, still feeling relatively fine, still without any real answers.
Doctor says I should settle in for the long run and I have this feeling deep-down that this is auto-immune and not MDS, but only time will tell.
So for now- no news is good news.
xo
b
Hi all-
Sorry I haven’t written in a while but to be completely honest I am a little frustrated. We seem to be no closer to knowing definitely what is wrong with me and I hate having a possible transplant hanging over my head.
I do have an appointment with a rheumatologist Monday so hopefully she can provide some insight.
Over and out-
B
