PDA

View Full Version : Different Doctor, Different Diagnosis?



LanaS
02-16-2011, 07:36 AM
These doctors will forever have me confused. Everytime I go to a new Rhuemy they have a different diagnosis, or worse no clue. These guys are supposed to be the nerds of med school. They are known for being very smart but not very social. However, all I know is that they are more confused than I am. Go figure. One says it is RA, then changes his mind to Lupus, another said you are just vit D defficient (who knew that in order not to swell, hurt, or get weak all I actually needed was to sunbathe. Idiot), Now the new doc says well we just don't know. I am thinking. I have no doubt what is going on and I should have went to med school just to save myself the co-pays. Thanks for letting me vent. I love this group.

Lana

SandyR
02-16-2011, 07:58 AM
First let me say I have been in the boat you are on and it's not a fun ride. Most of us understand the diagnosis rollercoaster ride pretty well. All you can do it to keep searching, keep researching what your drs say and keep discussing with them all of this. I think of it like a giant puzzle that involves powers of strategy, obeservation and logic. If you haven't already, show the new rheumy what the old rheumy's theory is and the labs and file notes they had to support it. Perhaps the new rheumy will be able to use that information to solidify a diagnosis. Also, many of us have multiple AI diagnosiis amd it is common for AI diseases to appear in multiples in a person so you may also be dealing with an overlapping disease issue that makes the individual diseases harder to diagnose. Stick with it. You are moving forward even if it seems like you are taking a step back. This is a long process for most of us and only you are going to keep it moving forward toward and end.

http://en.wikipedia.org/wiki/Vitamin_D

Also, there are several forms of vitamin D that your body can absorb. The sun is only one. Chemically, you might be a little low on one kind, like D2 but not D3, and that may be from diet. There are many diseases vitamin D difficiency can cause in the human body so you should find out from your doctor what they mean when they told you that you are difficient. Also, if they just told you that without blood work, you might want to ask them to run some to see if that theory is true or not. I'm not saying to increase you intake of vitamin D b/c I don't know your history with your body and how it reacts to ingesting vitamin D and I'm not a dr but if you look at the attached link you will have a better idea of the whole vitamin D issue.

Sandy

tgal
02-16-2011, 06:26 PM
Doesn't it just tick you off Lana? We go round and round just to find out they are as confused as we are! Sandy gave you some good information and I would like to mention that a huge group of people with AI issues are also vitamin D deficient. It is kind of the chicken and the egg thing. Are we deficient because we have and AI issue or did the deficiency help contribute to the AI problems. We knows. Who cares. Just make us well!

jmail
02-16-2011, 09:00 PM
All the doctors I've been to over the years, including the "specialists" who charge double or more for the visit, and the only one I consistantly trust is my PCP, the family doctor. She "digs" into the situation, and isn't satisfied with the "I don't know". She'll end that sentence with a "but I'll find out!"... I've had at least 6 rheumies over the last 20 years of my progression, and they've all but one been rude. Knowledgeable in what they knew, but rude. Does the clientele do it to 'em, or is it the schooling? Anyway...

A *big* thing that can cause issues with vitamin D deficiency *and* increases arthritis symptoms is hypothyroidism. Don't do just the TSH test, but get 'em all, and do 'em more than just the once. Mine went up and down for a few years, and it seemed that they always tested when my levels were just a pinch low...

tgal
02-16-2011, 09:28 PM
I have to agree with jmail about the specialist being less than useful. For me it seemed like none of the specialist would look at the "big picture" which left me at the same place that I was when I got there. The PCP, in my experience, tends to look at everything in order to make a diagnosis and isn't blinded by the confines of a specialty.

LanaS
02-16-2011, 10:42 PM
Thank you for all of the advice. I really like the people in this blog.To answer the vitamin D question. The doctor saw it on my blood work. He didn't say what it was he just said you are very defiecent and then he put me on 40,000 mg a week. which I didn't take for too long. Now my blood is showing extreme anemia. I had more blood work done today to determine if I am naturally replenishing my own red cells. My white cells are always high.

magistramarla
02-17-2011, 11:21 AM
Lana,
I am soo frustrated with docs!!! They can never seem to accept what another doc diagnosed. They always want to run their own tests and come to their own conclusions. Is it a pride thing, or what? I showed my new Rheumy the lab results that prompted my rheumy in another state to put me on plaquenil and MTX. She promptly ordered her own labwork, and since it all came back "normal", she questions my past rheumy's DX. Duh, do ya think maybe the meds might be doing their job???

I've been through the vitamin D deficiency, too. I took 50,000 mg a week for three months. Now I take 1000 mg daily, and I haven't had a problem since.
Good luck with getting your problems worked out.
Hugs,
Marla

tgal
02-17-2011, 12:47 PM
Marla's post is so true but it goes completely against how Lupus and other AI diseases are diagnosed! You don't have to have all the symptoms today! It is a cumulative diagnoses which means over time you have had enough to confirm the diagnosis! When the docs do this they just show how little they know about our disease!

SandyR
02-18-2011, 09:09 AM
jmail brought up a very good point - thyroid issues can definitely cause Vitamin D issues and also anemia. Have you had your thyroid levels checked? All of them. There's a thread I started about thyroid a while back that talks about what tests to they do for thyroid and what each test measures. I attached a link to it below.

http://forum.wehavelupus.com/showthread.php?8388-Thyroid-References

Also, and I know I said this previously but, if you haven't already, you should get a copy of your lab results and see exactly what did he test you for. Legally you are entitled to a copy of all of your medical records and medically it's one of the best things you can do for yourself to have them and carry them with you to your appointments. It's a huge pain in the rear to keep on top of them at times but somethings your doctor doesn't tell you everything they found out b/c they overlooked it, didn't deem it important enough, or maybe just had a God complex that day. Who knows?

Keep on top of the Vitamin D and anemia and this doctore. The bottom line is you are your own best advocate.

Sandy