old problems with new understanding?

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Cheryl S.

Aug 25, 2010, 2:46:36 AM8/25/10
to Autoimmune Support Group
I am just getting started on all this. I am not quite sure how to
start, and I am not even sure how to explain where I am coming from. I
have spent many many years trying to understand my problems. Some of
which began around the age of 12. But Dr.'s only have ever looked at
little pieces and never considered they might be related. This last
year I have gotten a stronger and stronger feeling that they must be
connected somehow. Until Sunday night the missing piece didn't fall
into place. My immune system. The question is now what? I feel
relieved and scared, empowered and powerless. It is an end and a

If I know I have autoimmune problems (diagnosed with Hashimoto't
thyroiditis), and I think I may have others because of other symptoms.
What should I do? Who should I see? What kind of Dr. am I looking for?
Or do I just continue cobbling together treatment the way I am now
between 4+ different doctors? What is the best book to start reading
as an introduction so to speak? I have always believed that knowledge
is power, that is how I got this far. (The medical community certainly
didn't do much to help me with understanding) But the internet can
take a person off into pathways of confusion and fear. Any advise on
how to get started?

Hopeful Sojourner

Aug 25, 2010, 4:35:49 AM8/25/10
to autoimmune-s...@googlegroups.com

Welcome to our group.  All of us here understand your frustration with the system and your concern regarding proper treatment.  It took almost 40 years for me to get a diagnosis and then everything seemed to fall into place as my symptoms were explained. We have a "fearless leader", Barb Yodice and many others who will give you recommendations regarding both referral and treatment suggestions that you may discuss with your physicians.  We all will give you a feeling of being understood and supported.  You absolutely made the right choice to post on this group and again, I welcome you with open arms.  You will be hearing from members who have Hashimoto's and others who will help you to learn how to advocate for yourself.  This is truly the key to success with autoimmune disease as you are correct - not too many people, let alone medical providers, know the ins and outs of autoimmune disease.  Be sure that you are in our thoughts and prayers and don't worry.  You will have many posts asking questions and offering suggestions!

Sending my best,

Mixed Connective Disease 2004
Pulmonary Hypertension 2004

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Aug 25, 2010, 1:46:04 PM8/25/10
to Autoimmune Support Group
Hi Cheryl,
I emailed you privately yesterday as well to inroduce myself as
group manager.

What are your symptoms? That is the best way to get you to the right
kind of doctor. Also the best beginner book to understanding is "Women
and Autoimmune Diseases: The Mysterious Way your body betrays itself "
by Dr Robert Lahita.

If you can provide me with more info I can better direct you.
Barbara Yodice, Founder of the Autoimmune Information Network and
Multiple Autoimmune Disease Patient


Aug 25, 2010, 1:47:04 PM8/25/10
to Autoimmune Support Group

How are ya feeling? How's Deb?

On Aug 25, 4:35 am, Hopeful Sojourner <hopefulsojour...@gmail.com>
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Hopeful Sojourner

Aug 26, 2010, 8:10:11 AM8/26/10
to autoimmune-s...@googlegroups.com
down to managing pain and pretty well confined to the house, especially with this weather...continuing to fight the fight...hope everything is good on your home-front...the network just keeps getting bigger and bigger!!!  I wrote an article for the Pulmonary Hypertension Assn. and it will be in their October Journal.  I will try to get you a copy of the article as I am suppose to receive a "mock-up" the end of this month.  They have created a new section in the journal called "Persistent Voices" and I am the first to be featured.  Somehow, we both knew this was gonna happen!  LOL  NOBODY can believe I have lived this long and to tell you the truth, I really can't believe it either.  I keep trying to catch you on your cell, but you are one busy son of a gun!  Great to hear from you and continued good health and marriage.  We should have Keith and Debbie talk sometime.  Bet they could swap some war stories!!!

Sending you my very best,


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Aug 26, 2010, 11:00:54 AM8/26/10
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Of course they asked you to write and article. LOL. I am in the midst
of writing a book (Johnson and Johnson asked me to) plus a production
company asked me to help devlop a series for TLC called "phenoms"
about people beating the odds and living with rare diseases. LOL. Been
kinda busy with all that plus school.

Deb and Keith could definitely trade war stories. I think Deb has him
a bit beat. I am glad to see that you are still kicking around and
raising some hell.

Try and catch up to you soon. Love ya
Hugs to Deb!

Barb (AKA Fearless Leader LOL)
On Aug 26, 8:10 am, Hopeful Sojourner <hopefulsojour...@gmail.com>
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Jun 1, 2011, 7:42:21 AM6/1/11
to autoimmune-s...@googlegroups.com
When you have any auto immune illness the most basic Doctor you should have as part of your team  is the Rheumatologist. He should be like the ring leader if you can find decent doctors....than depending on how your disease is affecting you body you will get other specialist and you should have a just a general GP or Internist Doctor for when you get regular sick. 
  For example, I had my RA doctor, Dermatologist, Eye Doctor, Endocrine, Urologist(kidney), Podiatrist since i have Ra in my feet, Now i would include a Pain specialist as well and highly recommend that to anyone in moderate to high pain levels. I would also see other specialist doctors as needed such a gastrologist   for stomach issues...and as a woman my Ob Gyn of course. But you could have all different kind of specialist just depending on the disease you have, pill side effects  etc. Yes, it can get overwhelming but if your Ra Doctor and all the rest all work together. I mean they actually either send letters or speak to one another about your disease and together try to figure  out with you a plan to keep you your healthiest it is not as bad as it sounds. You should be seeing your Ra Doctor around every 3 months unless you are doing exceptional well and really not needing a lot of other Doctors than every 6 months.  
Do not ever accept that a RA doctor can handle all your different needs that are going on in your body. It is one thing if you are either doing extremely well or in remission but if you are having different issues and your Ra doctor is not dealing with them quickly than insist on seeing a specialist in that area. Such as getting your thryoid pills balance clearly an Endocrinologist will have more experience in doing just that so see one. 
If your Ra is decent Doctor he will not let his ego get involved and gladly send you to someone that can be more efficient at helping you.  
  Since you are seeing 4 plus different Doctors now....hopefully one of them is a really great match with you...one that really listens and gets what you need better than the rest.(if all 4 are great than you can forget what i am going to say) I would speak to that Doctor that meshes with you and ask him to recommend other specialist like him, his personality. Once you have a team that main priority is getting you as well as possible and treats you with respect etc...it really makes going to the Doctor a whole lot easier. They will work together to try and minimize your visits as much as possible plus pills and than taking pills due to side effects. They just really work hard for your best health.  
  if right now you do not really like any of them....you can take the best of these and see if he can refer you still and say what you are looking fore exactly in a doctor. I personally like to be treated as a partner in that they treat me with respect and allow me to make the final decision on my care.  But getting the best doctors for you is the key. 
  I had all that ...than moved and now i am in medical nightmare trying to find decent doctors.  I have no Ra doctors in my area and one i was seeing i finally had to say enough is enough when he lost all my teeth because he would prescribe the drug my dentist kept asking him too. When he finally said okay, it was too late. That was it for trust with him and I worried constantly that next i might lose my eye sight or kidneys because he is not testing those not even half as often as my other doctors were...and the issues are still there . 
 So do not do as I did and settle for just any old RA doctor...they are like the team leader and if they just treat you so so than odds are somewhere eventually you will pay with your health. 
 Also if you have a good RA doctor he should be able to put all the pieces together and see how they are related...there are so many autoimmune diseases out there now that they know the names of it is ridiculously high. That is his job to know all these different diseases...not just deal with arthritis. 30 years ago when i first was having symptoms....and then they did diagnose SLE , there were hardly any RA doctors out there.  I was in the SF bay area and Kaiser will pull in specialist outside of kaiser if they do not have them ....they could not find one for me. Thankfully, I was working in Sacramento area and they had one older doctor there. He was the best and than my internist's husband became one because  she told him what a shortage there was and how hard a time i was having in finding a decent RA doctor. The one in Sac was due to retire in few years...so my friend the internist her husband became my RA Doctor. I was really lucky. 
 I really wish they had Kaiser up here where I live now...but I was one of the lucky people in that my internist was excellent and from her she would recommend like doctors as herself...so like i said i ended up with just a great team. I greatly miss working with them after my experiences up here. My health has suffered greatly for it despite me trying to be proactive as possible...just the good doctors do not live up or around here. 
  Hope i helped a little bit...sorry i get wordy...i just know first hand how having 4 or more doctors may seem overwhelming but if they all work together and try hard to make you healthy  it is so worth it!  good luck, lg
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