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Rheumatologist Appointment

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#1 ozzy69


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Posted 21 October 2009 - 11:07 AM

Hi everyone,

Yesterday I had my three month rheumatologist appointment. It has been a year since I have been diagnosed with Diffuse Sclero. I seem to be doing well. My lung function test have been good. My main problems are:

1. I keep a really red sore throat and have been having mouth sores. It feels like I have a lump in the bottom of my throat.
2. Pain in joints- mainly my ankle ( gives out when I walk down stairs or during certain activities), pains in wrist, and left hip.
3. Swelling of hands. ( worst in morning)
4. Bad Raynaud's in knee, feet, nose, hands. When my hands or feet get warm they are hot and swell
5. Right side pain under lower ribs ( doctor can't figure out why)
6. Night sweats
7. Feels like I have stuffy ears, some ringing
8. In the afternoons and early morning, I just do not feel well.

I have read lots of books on sclero, and gotten lots of information from this site. My problem is at my appointment yesterday, I drove an hour for an appointment that when I left I felt like: Why did I even bother going to the appointment. I like my doctor and she is very nice but I get no explanation. She asked me what was going on and I explained that my ankle is going out and my wrists are hurting. All she said was okay. Then I explained about my throat. She looked and said that it was really red. I talked to her about the mouth sores and she said it could be from the acid reflux but I was on a high dose of meds already for that. We talked about getting a scope done on my throat. The appointment was over in about 10 minutes and I feeling like it was just a waste of time. I know with this disease that you have joint pain, but different things cause it. It would have been nice to hear some kind of educated guess on what is going on. Needless to say my doctor is leaving and going to another state so that was the last time I see her. I will be seeing the person that is over her on my next visit in February. I have also decided to seek an second opinion with Rafael Grau MD at the Indiana University Hospital at the Scleroderma and Raynaud's clinic. I have that appointment in January.

#2 sandra


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Posted 21 October 2009 - 01:07 PM

Hi Ozzie!

All is not lost girl! You will get answers in January for sure - it's a Scleroderma clinic! By the way my throat is always sore and the roof of my mouth and inside right cheek almost always has red patches- they are surface patches no bleeding or ever breaking the skin, just there! But the throat is always mildly sore, like a cold is coming on but never gets here! Some days my tongue feels rough like sandpaper against the roof of my mouth. My results were Discoid Lupus for mouth and throat and eyelids and upper lip. But the rest of me is another story! :wacko: Overlapping chaos!

Ozzie, there is a positive side to seeking a second opinion. You will likely get a diagnosis and then a medical plan, I would bet, in January when you see the Scleroderma expert. I felt just like you not to long ago! And when I finally got diagnosed (and it was a long road), a medical plan was put in place and I actually started to feel better and in control again, bar a a couple of hurdles - minor med changes. Every time you feel a new or strange symptom jot it down on paper -take the list with you- give it to the doctor, he will read it and get a good idea where to start with you. He will appreciate the list!

Stay positive and get comfy until January. The Forum is a great place to come and vent or get a hug when you need one.

Your Friend Sandra

#3 Kathy D

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Posted 21 October 2009 - 03:09 PM

Hi Ozzy,

I wonder if you swollen throat is pressing on your eustacian tubes making your ears feel stuffy?

Diffuse Scleroderma Diagnosed March 2009

#4 enjoytheride


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Posted 21 October 2009 - 04:19 PM

Hi Ozzy- I have had some of your symptoms and I can tell you what I figured out myself for what that's worth ( my doctor doesn't think it's worth too much :).)

For about 5 years I had a pain under my ribs on the right side enough that I couldn't quite straighten up a lot of the time. I also felt bad after breakfast, which is not like your situation but until I ate, I felt fairly good. My doctor kept sending me to have ultrasounds of my liver and upper endoscopies without resulting in a diagnosis.

Well- after getting worse for all that time, I decided to stop all my medications to see if that was the problem. Then, if I felt well, add them back in til it re-occurred.

Turned out to be the calcium supplements the doctor had me taking. No calcium, I'm pretty good- 1/2 of the recommended dose, I have some problem but not a lot- full dose , I get constipation. And the pain under the ribs. How silly to get so sick I throw up due to that.

I'm still struggling getting the calcium my doctor says I need - so far I drink lots of milk and take the 1/2 dose calcium citrate supplement at bed time. Just started but seems OK for now.

Please note- I'm not a doctor and don't even play one on TV so take my story for the strictly personal anecdotal thing which it is.

#5 debonair susie

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Posted 21 October 2009 - 04:25 PM

Hi Ozzy,

Having driven the distance you did, I feel bad...for you, that you came away feeling slighted, about your doctor appointment.

There are various reasons that you could have sores in your mouth. Since I'm not a doctor, I will say that I've always had good luck gargling with warm salt water, a few times throughout the day, most especially just before going to bed.

I am so glad to read that you have two appointments in the offing. I'm hopeful that you will be able to get some very helpful answers at each of these appointments.

The swelling and redness could be short-term, but that is no consolation when it's troublesome for you now.
Mine is on and off again, most especially at most joints, but as time goes by, it isn't nearly as painful as it was at the onset.

I'm sending you {{{Soft Hugs}}}, which I hope, will help!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#6 betty32506


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Posted 22 October 2009 - 04:48 AM

Hi Ozzy,

I keep a really red sore throat and have been having mouth sores. It feels like I have a lump in the bottom of my throat.

The sores in my mouth are mostly like small blisters but do not come to a head. My Rheumatologist quickly said Sjogrens. I have not had a lip biopsy but that didn't matter to her. Evoxac has helped a lot.

#7 ozzy69


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Posted 22 October 2009 - 10:36 AM

Thanks so much for everyone replies. I am glad that I do have appointments with other doctors in the future. I really try to stay positive about everything and I am grateful that I am not getting worse at this point. I read some of the other post and I know that I could be doing worse. It just seems frustrating at time!


#8 Snowbird


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Posted 22 October 2009 - 11:04 AM

Hey Ozzie

I'm sorry to hear your appointment was so disappointing, to say the least.

I also think it's really good that you are going to a scleroderma expert in January....I think you'll have much better luck there...that will help you all around and hopefully get you some much needed answers. We're all here in the meantime!
Sending good wishes your way!

#9 Sweet


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Posted 23 October 2009 - 11:27 AM

Hey Ozzy, what a disappointing appointment. I can honestly say that I've had MANY like that myself. I'm glad that you have an appointment set up in January with someone else, and I hope you can come away from that one feeling a little better with the quality.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)