The joy of a great Rheumatologist!

[Carolina]

Dearest Sjogren's Angels,

At last I have found a wonderful Rheumatologist.  I saw her last Tuesday, and had a great experience: she listened, she was smart and creative, and she did the MOST thorough examination I have ever had. 

I felt heard, respected, and safe at last with a smart woman who is a smart doctor.  She was not fazed by my complex and sometimes rare set of medical conditions.

As you may remember, last fall my great Immunologist told me that I needed to see a Rheumatologist to manage my new (yet another!) diagnosis of Polymyalgia Rheumatica.

My heart sank.  I told her that I had only known TWO good Rheumatologists since 2002 when I first encountered a Sjogren's diagnosis. My Immunologist AGREED that there are few good Rheumatologists! But she knew of one for me.

I had to wait four months for an appointment, and now I know why.

Don't give up on your search for a good Rheumatologist.

They may be as rare as unicorns, but good Rheumatologists do exist!

Regards, Elaine

[Carebear]

I'm very happy for you,  Elaine.  And a bit envious.  Actually,  a lot envious! 

[irish]

So glad to hear of your luck. It definitely is a waiting game. Can take years to find good doctors and usually does. Hope she can get you straightened out and more comfortable. Irish

[jazzlover]

Wow! Lucky!

I hear they are hard to find in our area too. I may need one soon.

I just hope the doctor will be able to help you.

[irish]

I will need an immunologist soon or maybe a rheumatologist as my rheumatologist retired and I have had to change infusion centers after 13 years and one month of infusions there.

Hard to find good doctors. Thankfully my neurologist can order my IVIG for my Myasthenia gravis. Don't know who is going to want to deal with my other 4 autoimmune diseases though. Good thing I am 77 years old. Won't have many years left to worry about my health...I would think!!! Take care all..Irish

[Deb 27]

Sorry about the polymyalgia rheumatic but very happy that you found a great rheumatologist! You deserve it!! We need peace of mind and a doctor we can trust. We have too much to deal with otherwise.

[Kathy57]

Elaine,

So glad you found a good doctor!  After everything you have been through, you certainly deserve one. 

I love my Rheumy, but he has just gone part time in preparation for retirement.  He has been trying to find a doc to replace him, but so far no luck.  I don?t know what I?ll do when he retires.  I?m an hour from the University of a Iowa, so perhaps I?ll seek a referral.

A good doctor is a real gift.  Wish you the best!

Kathy

[volleymom]

I'm in need of a new rheumy, but I've put off trying to find one out of being weary of less-than-stellar doc experiences.  I see I live in the general area you do.  May I ask who your rheumies are? 

Thanks~
Suzanne

[vrystaat]

I have had about 6-8 Rheumatologists taking care of me since 1992, for Polymyositis and Sjögren's Syndrome .
I have not had good luck. My first MD was a referral from a Neurologist to an Academic Rheumatology Center.
Despite what was later found to be classic symptoms, it took until 2013 to diagnose me. A GP suggested the diagnosis, and hey, presto ......
I received IVIG in 2015, with care by the finest lady Rheumatologist, belonging to a leading university. I responded very well. Unfortunately that Doctor moved to another State.
In my State, a good Rheumatologist was very hard to find. All that was done to me was trying Prednisone, Imuran & Cellcept. All of them made me very prone to infections.
Since 2015, I have been begging for starting IVIG again. This was refused  by all my Rheumatologists, for no good reason.

Since 2018, I stepped up my campaign, and left the university practice. I retained a Neurologist, a private Rheumatologist and finally a Hematologist. I had to push very hard, and then
mentioned Medical Malpractice to them. At last  ..... last week, I was able to start IVIG at a dose of 200 mg/Kilogram. I already feel great, but I don't know why I had to wait so long.
I don't know what's wrong with our Medical System.

[irish]

It can be a long wait for IVIG. One of the reasons the wait is long is because there is a shortage of the products. This has been going on for years and is getting worse.

The other reason there is a wait is because there are criteria that has to be met to get IVIG. Your doctor can order the IVIG but the request has to go to a committee which then reviews your health status. There is a list of diseases that can be treated with IVIG. I have Myasthenia gravis and this disease has been on the list for years as a disease that can be treated. This is a neurological disease that can cause deteriorating health status very rapidly at any time that can result in respiratory arrest and death.

This committee does the best it can with the supply they have. Some products have shortages more than others. There is a business/lab close to me that does blood collection of plasma that goes to the companies that make thte IVIG products. There are labs all over the country. People are paid for their donation. I would donate but I can't donate blood due to all my health issues. Bad health status makes it so hard to get the blood collections for the IVIG. Hope you continue to feel better. Irish

[Carolina]

Dear Vrystaat,

IVIG has made all the difference for me.  My Immune Deficiency was identified just at the time I was beginning to be always sick.  One thing after another: Bacterial, Viral, and fungal.

Now 6.5 years later, I am almost never sick..   I nurse comes to my house every four weeks.  I have 35 gm of Gammaguard-C which is in short supply, so I'm lucky to have it.

Since I am almost 78, with lots of medical 'issues', I believe the IVIG is saving my life, truly.

Elaine