Tomorrow I am going to see my new Rheumy!
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May 11, 2009 at 9:43 pm
Well family! Tomorrow is my big day! Finally getting in to see a Professor of Rheumatology at the Broody School of Medicine at ECU. Supposed to be a top notch Rheumatologist! I sure hope so!
Duke did confirm that Lupus was the main cause of my CIDP. That it was rare in most cases with people with Lupus but a few with Lupus do get it! So they referred me to see this doctor in Greenville. Greenville is supposed to have one of the best Departments for Rheumatology. But we shall see.
The Neurologist that tried me on Rituxan and I could not tolerate it decided to place me back on prednisone. But has recommended Immunosepressant Therapy for me! So tomorrow when I see this man I have no idea what he is going to do wth me!
I pray that he finally gets this Lupus in better control as far as my nervous system goes. Will let you all know what the out come will be. Hopefully I get a good doctor and he helps me get better! I saw very good doctor’s up North and they helped me. But then my move down South was a mistake that I regret doing for when I came to this town I am living in, I found some very lousy doctors or either doctors that rarely see Lupus and just don’t know how to treat me. I don’t know! At least my regular doctor though this past year has been great. He helped me and he got me back in the door to some decent doctors and they are all now helping me.
Last year I couldn’t walk much, was not sleeping, burned in my hands and feet and body stayed numb. Was going nuts at the same time frame. Thought I was dying! And today I am walking and using my hands better, sleeping, and not going nuts! LOL!
Although I am still suffering from this nasty lupus mess, I have imporved from last year. Not where I would like to be but have improved. The nerve damage though is still there lurking and they want to try and stop any further progression. So I just don’t know what my fate will be tomorrow. But I hope it’s for the best! My regular doctor mentioned a chemo drug. Not sure if they are going to do pill or IV. I hope pill form!
Keep your fingers crossed for me! I get very nervous seeing new doctors. At least the first few times. I either get along great with them my first visit or I don’t! The ones that I do great with and feel comfortable with I know I have a doctor that listens and feel like he cares. The ones that are quick and don’t take time and act cold at the first visit are the ones I normally have problems with! So I am scared to death!
Please say a prayer for me tomorrow that I see a doctor with a very nice personality and is caring and understanding and treats me well! I’m nervous as heck tonight! The entire trip is going to be a worried one. My husband is going with me though but I still want to see a good doctor! I am the type after going through what I went through down here I am weary of seeing new doctors. I have 5 doctors now that I finally have that are good. Took me 6 years to find them. And I hope it stays that way! Doctor number 6 I am praying will be my good luck charm! Have a good night family! Going to hit the sack early tonight for tomorrow is going to be a busy day! Hugs
Linda H -
May 12, 2009 at 6:03 am
Linda,
I think what you should do is to find out an internist or inmunologist,
is the only way you will know if have Lupus, MS, ALS, CIDP, vasculitis, Lyme or any other dx
you mention in all your post. There are antibodies kits to test any of this diseases.
P ASCA, C ASCA, GM1, ANA antinuclear antibodies…..
Here were I live ech test is about 40 US$, there in EEUU should be cheaper.
If the insurance or you, have the money for Ivig, you should be able to afford all this test and know what is going on with your autoimmune disease.Pablo,
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May 12, 2009 at 3:47 pm
Good Luck and keep us posted
Sue
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May 12, 2009 at 8:59 pm
Boy was I pleased seeing this doctor today. He is top notch and knows what he doing. He checked me out really good and I was in his office for two hours. He reminded me of the Rheumatologist I had in PA and she too was good. He saw the Livedo Reticularis and I have Raynauds and the Schimer Test showed positive for Schrogrens Disease. All typical symptoms of Lupus. Drew 8 tubes of blood and is going to call me with the results.
This doctor actually took the time and read all my records and we know it’s Lupus for sure but I told him my concerns about the nerve damage, the infections and my lungs acting up all the time and he thinks the lupus is attacking my lungs.
Next week after he gets the labs they are going to place me on Immuran. Said that would be best for problems with lungs. So Immuran it’s going to be! He wants to see my labs first to see where I am at and then decide whether I get IV or Pill form of Immuran. But I now know what course of treatment he plans on giving me.
Really nice doctor. Very thorough and I think I have found a very caring doctor! So today my trip to Greenville was a good trip and I now have 6 good doctors! Yeah!!!!! Ohh! When I lived in PA my rhuematologist there was always doing labs and I normally would get 8 tubes drawn each visit. When I moved to NC. Not once has a doctor done all these labs at once and some they didn’t even bother doing. This doctor did what my doctor in PA did. So I am on the right track now at having the treatment I need! Wheww! Finally found 6 good doctors and believe me! I’m keeping them! 😀 This man knows his stuff! Very good doctor!
But I am exhausted! Totally exhausted. Very long day but well worth it!
I am pleased with the outcome!
Hugs
Linda H
Hugs
Linda H -
May 14, 2009 at 11:49 am
Linda – So glad to hear you found a good doctor. There is nothing worse than not being able to find a good doctor. It’s bad enough that we get these diseases and then have to worry if our doctor is doing what he should be doing. Well, get a good rest and enjoy your day. Hugs and prayers to you.
Clare in Michigan -
May 14, 2009 at 12:24 pm
Thank-you Claire! It was kind of funny while waiting to be seen. He was a little behind schedule on seeing us. One man there started griping because he was having to wait along time. Then this woman across from us just blurted out ” I have been coming to see this doctor for 15 years and I’m not about to give up on him now! Then several were talking about how good of a doctor he is! When I kept hearing the goodness about him without seeing him yet that kind of eased my mind. Once I saw him and the time he took with me, I was so grateful seeing a doctor actually spend time with me the way he did. Everybody that was in that office Tuesday was all talking good about him and how much they got helped out and feeling better because of him.
Now that I have the good doctors, I no longer need to be referred here and referred there and have my foot in the right direction. Only bad thing was the long waiting and being seen by others with them consulting with each other about the best treatment for me. So Immuran it is! But am glad that I now have a good team.
Very frusttrating trying to find them out there that are good. Many do save lives but many also don’t deal with rare diseases and you end up wasting money by seeing them. Money that I could be using on something else! Hugs
Linda H
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