Good News, My Dr. Might be Able to Get Me Into Cleveland Clinic

[lala_rawraw]

Woo hoo. Just think 9 years of crap, 1.4 of trying to get into University of Miami only to get a jerk who had no clue. My rheumetologist has now taken it upon himself as a "mission" he said. I am thrilled you guys. I cannot tell you how important it is to have an advocate, because the HMOs don't care, most doctors don't care, and most programs/clinics don't care. This for me is a miracle.

He is going to pressure them to take me. HA!

Anyway, just wanted to share the good news:)

[ewagner]

1. Good news indeed!

I wish you all the best! :hi: :toast:

[Spazito]

2. Excellent news!

I am very happy for you!

[sabra]

3. Excellent, wish you good luck...

[Jo March]

4. Good luck, darling!

I know how it feels to have doctors not listen. It's so frustrating.

Don't let them wear you down. I'll be praying for your good health.

Arnie

[Dogmudgeon]

5. What have you got?

I missed it. :(

I've also had chronic health problems, and I'm quite disenchanted with the medical establishment. I'm glad you found a physician who is interested in practicing medicine and curing disease.

Your victory is a boon for us all. Congratulations!

--p!

[lala_rawraw]

24. I am

Ill with a Lupus type illness called MCTD, (http://arthritis.about.com/od/mctd/) which combines elements of Lupus, RA, and Scleroderma (in some patients it can combine other immune illneses).

MCTD does not include all of the aspects of these illnesses, but an overlap. So the Lupus part, right now, is not as bad as, for example, the RA part right now. In other words, I have had mild kidney problems lately, but nothing like full blown Lupus patient's have. But, my RA is worse right now in that my joints are going kaka and my Scleroderma, while not life threatening (yet), is allowing for my white blood cells to attack all of my soft tissue. So I am having trouble moving sometimes, or seeing, or I may be walking and just fall over (not to worry, I try to look stylish in the process).

Eventually, one of the three overlapping illnesses becomes the main, full blown condition and the others remain where they are.

There are different opinions on which one will become the "leader", but the majority think it will be full blown Lupus with RA and Scleroderma overlap.

Now, the situation is that once I get the treatment I need, I may go into full remission (good chance), but until that happens, the damage will continue and it cannot be undone. So if while I wait around I happen to go blind, the treatment cannot reverse it, it can simply stop it from moving forward into death.

I became ill in my early 20s, I am now 33 and it took 9 years for someone to think of sending me to a rheumatologist. But once I had him, my hero, we knew what was wrong very quickly. The last year we spent fighting my HMO to get a referral to see an immunologist at the University of Miami. I then spent 2 months after the referral waiting for them to review my case and to see if I was "worthy" of their time. I then spent roughly another 2 months waiting for an appointment.

When I finally went in, prepared for the more invasive testing and such, the immunologist saw me for 15 minutes and did not know what to do with me because she had not reviewed my case AT ALL.

So she sent me home and said she would discuss with my dr, which she has not.

You see how much the medical profession cares?

Anyway, my dr. became very angry and decided to push this through at Cleveland Clinic. I cannot be treated until I get the tests that I need... testing me on a cellular level and marrow.

Basic chemo is too dangerous for me. Mild chemo usually given to Lupus patients did not work. That leaves very few choices.

So this is indeed great news and I am very happy that at least one doctor on this planet cares:)

That is a rough, very rough summary. I am very happy right now, although per usual, running a fever, so must go nap.

[Eloriel]

31. Oh, goodness, lala

what a tough row to hoe. Bless your heart. I'm so glad you're finally getting help.

Forgive me, but I just have to ask, and you don't have to answer me but if the answer is yes I'd encourage you to do some research on the internet. And the question is: are you or have you been a longterm user of diet soft drinks and/or artificial sweeteners (esp. nutrasweet)? Again, it's just a question for you, not for me.

Best wishes. I hope you'll keep us well informed. I've grown quite fond of you since I started noticing you hanging 'round here.

[lala_rawraw]

34. no, not at all...

this just sort of happened with a flu I could not shake...that was the start.

i only recently started drinking coke because it helps with pain for some reason.

[suffragette]

6. Wonderful news

Glad you have found a physician who is advocating for you. Wish you the best.

[Rick Myers]

7. Excellent news!!!

I was taken to the Cleveland Clinic at age 13 and correctly diagnosed when 3 other hospitals had NO clue. In the mid-80, I actually worked at the Cleveland Clinic (in IT) and it's one of the BEST medical facilities in the world!!!

[meganmonkey]

8. Hooray!

That is very good news. I have heard good things about the Cleveland Clinic. I used to work at a doctor's office with a specialist who was considered one of the best in Michigan for his field. He would sometimes try to get patients in at the Cleveland Clinic for certain things because they were so good.
I wish you the best!

:bounce:

[Coexist]

9. Good for you!

Is that in Naples?

[lala_rawraw]

29. No, near Ft. Lauderdale... Weston...

So I don't have to go too far. The other is in Cleveland, Ohio.

[Robbien]

10. About time you got some great news. WhooHoo!!!

You more than deserve it.

:party: :party: :party:

[Name removed]

11. Deleted message

Message removed by moderator. Click here to review the message board rules.

[Capn Sunshine]

14. Sometimes people have insurance

and in other cases sometimes they expend every dollar they have fighting a democratic cause everyone should be involved in and then find out later they are seriously ill, and have no money left for insurance or treatment.

Your comments are unwelcome and offensive to me.

[Name removed]

19. Deleted message

Message removed by moderator. Click here to review the message board rules.

[Capn Sunshine]

21. ?

[lala_rawraw]

26. Can we not make my happy news flame

About someone else? I find that offensive and really of little respect. If you think I am "standing by while others misrepresent their illness" you are suggesting something that you either need to take to another thread where you can describe it better in a flame bate or you can just stop it. I find this really in bad taste.

[Obamarama]

33. No offense intended....

As a matter of fact I donated not once, but twice, to you-know-who about you-know-what. Whatever the facts really end up turning out to be are of no consequence to me at this point. Nor was I making judgement against you-know-who.

I was simply trying to bring some much needed levity to this place called DU, and my comment was intended to fall into the maudlin humor category.

Though we may all be of like political viewpoints here at DU, I do confess that at times I forget the extent to which political correctness seems to really matter here (and I think that's a GOOD thing by the way.)

I can understand how you may have taken offense. Again, not intended and apologies offered. :-)

[lala_rawraw]

35. not a problem

:)

[lala_rawraw]

27. Again... I

Will not ask for money. Nor will I ask for any other help. Rest assured on that. I have never done so and I would not put myself in a position to do so now. You need not take your frustrations out on me because you need a tumor in a jar for evidence. That is your problem. Not mine.

I am simply happy about this news. Why do you need to spoil it?

[lala_rawraw]

25. No, never... it has been suggested by a few

DU people and other people asked me to setup a blog for donations. I have always said "no." I know how people are with money and what money does to people. I have always just asked people to donate to the Lupus foundation instead.

I have watched what went on here also and I found it horrific and it supported my feelings on the topic.

So no, I will drop dead before I ask for money:)

[savannahana]

12. that is great news!

Wishing you the very best of care from now on, lala :toast:

Another :toast: to your rheumatologist-advocate is in order, for sure!

(Have had my own run of "jerks without a clue";
& too many friends through the years mis-dx'd
many times before somebody finally got it right.)

[madrchsod]

13. if am correct the cleveland clinic is

in the top three medical facilities in the usa. good luck!

[Mairead]

15. Well done! Very nice indeed

[Just Me]

16. I'm so happy for you, lala_rawraw!!!!

:hug: :bounce:

[Individualist]

17. I'm so happy for you, lala

It goes without saying that you'll get the best of care at Cleveland Clinic.

[DulceDecorum]

18. Best news I have had all day.

:bounce: :toast: :bounce:

[lala_rawraw]

30. heheh, you? how about me:D

Well, now let's see if I have to wait a year, lmao. In the meantime, I am having fun watching the GOP unravel.

[starroute]

20. That's great

We'll all be applying a little psychic body English to nudge that "might" into a "definitely."

[elehhhhna]

22. pssst. I heard on FR that "Cleveland Clinic" is code for

"margarita-soaked sunfest at a remote Mexican beachfront villa."


pass it on.










best o' luck, la la!

[lala_rawraw]

28. You know, I really hope so

I am sick of the whole medical look anyway.

[seabeyond]

23. good for you lala, best of luck with it n/t

[housewolf]

32. Oh Lala...

That's WONDERFUL news!!! I am SO happy to hear that for you. Yaaaayyy! Some hope! That's just great.

Thanks for sharing GOOD news with us, it helps all of us.

:woohoo: :woohoo: :woohoo: :woohoo: :woohoo: :woohoo:

[Willy Lee]

36. Good luck with everything La La.

Sending you some positive vibes for your health.

WL

[troubleinwinter]

37. Yippee!

So happy to hear this.

My husband has RA. He'd have been in a wheel chair a long time ago, but HMO finallllyyyy got him on a miraculous I.V. drug, Remicade, once every 6 weeks... would cost our entire income, were it not for our HMO medical coverage. As it is, he is doing just fine!

There ARE some good new meds and treatments out there. Maybe not 'cures', but treatments.

Best wishes to you, lala!!

[annabanana]

38. Congratulations lala!

Things are looking up!

I wish EVERYONE had a healthcare ombudsman until a real National Health Care System is available.

[goclark]

39. Oh happy day! Happy for you ! nt

[salvorhardin]

40. Oh wow

That's wonderful news! Very cool. :-) I'm glad you found someone to advocate for you.