Author Topic: Is this normal with rheumatologists?  (Read 4724 times)

shortnsweet

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Is this normal with rheumatologists?
« on: July 22, 2008, 07:26:32 PM »
It took me 3 months to get an appointment to see my rheumatologist for the first time.  Then for my first visit she just wanted to confirm what I have by more specific blood work than what my general doctor did.  So, we didn't discuss much except prior medical history and symptoms.  Then she doesn't want to see me for 10 weeks.  My blood work came back in 2 weeks and so I have 8 more weeks before I even see her again. (I was originally told that I had Sjogren's and RA but my test results came back positive for only Sjogren's).   I called today to see if I could get an earlier appointment, any day and any time, and she is booked until the mid of October.  So I will just keep my scheduled appt in September.  Is it normal to have to wait this long to see a rheumatologist for the first time or for a follow up appt.? ???

Also, my main symptoms are extreme fatigue and dry lips.  The rheumy doesn't think it is a good idea to put me on medication yet because of my age (24yrs old) so she pretty much just wants me to eat right and excercise regularly to keep myself as healthy as possible.  I know that the sooner Sjogren's is diagnosed and the sooner one is treated the better.  Is anyone else just trying a healthy lifestyle without medication?  Is that normal for some? 

Kelly

Scottietottie

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Re: Is this normal with rheumatologists?
« Reply #1 on: July 22, 2008, 07:37:39 PM »
Hi Kelly  :)

Where are you? If you are in the UK then it's not that unusual to have to wait that amount of time. If you're in the US - that's different. I'm not surprised she didn't put you on medication yet because I assume she's waiting for the blood tess and the second appointment but it's a bit surprising she hasn't suggested Plaquenil as it's often given to begin with.

Has she prescribed anything for the dryness? Mouth sprays or pastilles? Do you need to use eye drops?

I'm glad you're not testing positive for RA anyway.

Take care - Scottie  :)
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Bucky

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Re: Is this normal with rheumatologists?
« Reply #2 on: July 22, 2008, 08:50:17 PM »
Hi Kelly,

I was wondering the same thing myself!  I had blood work done the end of May and my app't. with the rheumatologist isn't until September to go over the lab results.  I called to try and get an earlier app't. and they say it takes that long to get in (especially for new patients).  Hmmmmm, seems like they need more rheumatologists.

Hang in there . . hopefully, we'll get some answers soon.

Bucky
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irish

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Re: Is this normal with rheumatologists?
« Reply #3 on: July 22, 2008, 09:53:27 PM »
In the US there is a shortage of rheumatologists and it is the norm to have to wait 3-4 months for a follow up visit. If there is something that is really urgent or life threatening they generally get back to you as soon as possible. Being that you have problems that are not life threatening I can understand the wait. My follow up with my rheumy was 4-6 months and the same for my neurologist.

Since you are 24 I can see some of her consideration for waiting a little while to start on the stronger meds. It just depends on the symptoms you are having. I would imagine she thinks it would be good to wait until you have had children etc.

However, you need to discuss the symptoms you have and what they are doing to your activities of daily living. Has she considered a shorter trial of Prednisone to see if this will zap some of the symptoms for now????Good luck Irish ;D

Pooh

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Re: Is this normal with rheumatologists?
« Reply #4 on: July 23, 2008, 05:12:48 AM »
Hi Kelly,
If you are in the US or even Pennsylvania where I live, you can bet it will take several months to see a rheumy or any other specialist.  It took me 7 months to get to see mine the first time.  My hubby waited waited over 6 months to see his doctor about his breathing problems. 

It really looks like we have a general shortest of good doctors and they are way over worked.  Is it any wonder they give us the short end at times. 

I hope you will be patient with this doctor, she sounds as if she wants the best for you.

Pooh

shortnsweet

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Re: Is this normal with rheumatologists?
« Reply #5 on: July 23, 2008, 05:36:19 AM »
Scottie,

I live in the US.  I haven't been prescribed anything for my dry lips because if I drink a ton of water and stay away from caffiene (b/c it dehydrates).  I am pretty much able to keep my dryness under control.  I don't have dry eyes or any other major issue where I would need anything else yet.  My biggest issue is just fatigue.  I am a teacher and right now I am on summer vacation, so I am feeling pretty rested b/c I can take 3 hour naps if I want too.  However, that won't be the case once I go back to school. So we will see how that goes. 

Kelly

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Re: Is this normal with rheumatologists?
« Reply #6 on: July 23, 2008, 09:05:24 AM »
Hi Kelly  :)

When I was in the US, visiting my son, I bought some lip balm called 'Burts Bees' I think. POOH! Help me out - do I have that right? Pooh recommended it anyway.
It has beeswax in it and I've found it's better for dry lips than any of the other products I've tried.

Take care - Scottie  :)
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kcoffiner

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Re: Is this normal with rheumatologists?
« Reply #7 on: July 23, 2008, 01:40:29 PM »
It is good that you don't have the full fledge symptoms of dryness yet. But I would take advantage of that because it can change. I would recommend seeing a good opthamologist who may put you on preventive medicine to ensure that your eyes stay moist. I wish I had known yrs ago that my dry lips and hair was caused by Sjogrens.

Best wishes,
Kim

SilberKatze

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Re: Is this normal with rheumatologists?
« Reply #8 on: July 23, 2008, 04:50:31 PM »
For me I was able to see my first Rheumatologist to wait one month, the follow ups were every two weeks for 2 months. Then my Rhuemalogist decided to go to the navy and just stopped right there. Didn't get me a new Rheumalogist. =) That was back in 2006

Now this year I was suppost to see one May(Got the appointment in like Jan.08), but that one I didn't make it in time. Then had it reschuled for July first, but then SS had to cancle it because there was a problem with appountments, now I'm waiting for August 6th. =) So yeah. It's been a fun year.

Billydude

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Re: Is this normal with rheumatologists?
« Reply #9 on: July 23, 2008, 06:55:33 PM »
That seems long to me but of course it depends on how many rhumys are in your area.  I'm in the San Francisco Bay area so perhaps there are more here.   My only problem is the waiting time once I'm in the office.   I had to wait three hours on my last visit.   I think I was able to take two or three naps.
Steve

irish

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Re: Is this normal with rheumatologists?
« Reply #10 on: July 23, 2008, 09:39:29 PM »
kelly, About 10 years ago when I was working as a nurse and putting in some long hours I would come home from work and immediately go to bed and take a nap. I would set my alarm so I could sleep 1 1/2 to 2 hours and then I would get up and eat supper and do my work, etc. That might be an option for you. My hubby thought it was very weird at the time but after I was diagnosed he understood the situation.

You do what you have to do to get things done. Also, be careful not to drink too much water and get sodium and potassium depleted. Sipping on bottled water or decaf ice tea etc helps the thirst and dryness without causing the  electrolyte problems. Good luck Irish ;D

SilberKatze

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Re: Is this normal with rheumatologists?
« Reply #11 on: July 23, 2008, 11:02:43 PM »
Hey Irish, would Herbal tea work too?  I usually have a hard time drinking water cause it never seems to moisterize my mouth, but I try to drink Herbal tea every night before bed.(I usually add Honey too)

Patze

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Re: Is this normal with rheumatologists?
« Reply #12 on: July 24, 2008, 04:16:58 AM »
Hi folks, I guess it really does depend on where you live.  Where I live, there are a lot of rheumy's, but you have to be careful because some of them aren't really good with SJS.  The one I see usually takes 2 1/2 to 3 months to see him as he's a busy fellow. 

Hi Steve, yep, I've had to wait for him a couple of hours once and I actually got a whole 4-5 minutes with him.  Yeah, he usually drives me crazy but lately he's really gotten decent to me - I'll keep him for the time being.

Hi Scottie, you're right, it's Burts Bees (BeesWax Lip Balm).  I use it now and then as it tends to sting my lips - it does keep them soft, but I'm allergic to bee's venom to so I guess that's why I get that reaction.

Hi Kelly, I am jealous!  What does rested feel like?  ;)

Y'all take care -

Patze
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