Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Finally Going to See A Rheumatologist


  • Please log in to reply
22 replies to this topic

#1 JohnJ

JohnJ

    Bronze Member

  • Members
  • PipPip
  • 20 posts
  • Location:St. Louis Mo.

Posted 12 November 2008 - 08:31 AM

Well at last I will see a specialist on the 18th of Nov. Can you folks
give me a list of some things of what I should be asking, perhaps further testing and such? My symptoms have gotten worse, and I have severe Raynaud's attacks daily, and my middle finger on my right hand has a sore
with a hole in it filled with a yellow substance, that is extremely painful.
I take Viagra, a prescription pain reliever, and Prilosec for my worsening heartburn. I have noticed my fingers on my left hand starting to exhibit Raynaud's, as well as my toes, and I feel pain in my elbows and finger joints. I feel like a mess, and I was turned down by SSD I think partly because my medical records were not updated with the new diagnosis. Any suggestions would be greatly appreciated, thanks, JohnJ

#2 canon

canon

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 312 posts

Posted 12 November 2008 - 04:55 PM

JohnJ,

Hope the appointment with the specialist goes well for you and you get the information and support you are looking for. Try again when you get the documentation you need. Good luck and keep posting.

With gentle thoughts.

Judy
A happy heart is good medicine.

#3 Gidget

Gidget

    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 13 November 2008 - 04:20 AM

John,
I am sorry to hear about your hands. My advice is to get a really really good pair of gloves. My first year I didn't really understand what the Raynaud's was and by the end of the winter, I had ulcers on almost every finger and each one was bandaged up. I still have the scars to prove it. My next year, I got a really really good pair of ski gloves and wore them all the time. I also had a spring/fall pair of gloves and wore them all the time. So by then I was able to avoid the ulcers, etc. Now I just live in Florida and it solved the whole problem. So in addition to taking medications, be sure to get some really good gloves and to do whatever you can to stay warm. Good luck. Gidget

#4 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 13 November 2008 - 06:05 AM

Hi John,

I'm really glad to read that you'll be seeing a specialist, this month. I hope that you are able to get some good information/help too.

You have a great start, as to what to "take" to the doctor.

1) the doctor will want a list of your medications. There may be some the doctor may find not working as well as others may. Your medications may need to be "tweaked", maybe.

2) Make a list of symptoms you are presently experiencing. Your Raynaud's issues definitely need attention...it sounds like you have infection!

3) If you have definite diagnoses, list them. You may be able to appeal the SSD denial, with the assistance of your doctors. (Had it not been for my rheumatologist doing all of the paperwork, I'd probably STILL be in a pickle)!

4) It's great if your present doctor(s) can network, so they are aware of all that's going on (with you) The stronger the network, the better you can be helped. For me, all they have to do...is click up my records on the computer and it's right there!

I have no doubt there will be others who can offer up suggestions for your doctor visit.

Keep us posted, John?
Susie

5)
Special Hugs,

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

#5 JohnJ

JohnJ

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 20 posts
  • Location:St. Louis Mo.

Posted 13 November 2008 - 06:25 AM

Thanks for the tips ladies. Debonair susie mentioned I might have an infection. Last week my primary doctor had me take some xrays of the hand to see if I indeed had a bone infection. I mentioned I thought it looked like
the stuff on the tip of the finger might be calcinosis and he brushed it off,
and told me to not read too much into what I pick up on the internet, but I have learned more from this site and you folks then anywhere else!
The pain is really bad today as a result of banging it while turning the water knob on the kitchen sink, and that was yesterday! While I am in pain, the Raynaud's attack is really severe. How does SSD expect me to hold a job? Anyway, I plan on making a list of everything that has occurred to date and will start a journal so I don't forget things in the future, I have also kept my cell phone along side me so I can take pictures
of the attacks as well as the ulcer on my digit. Thanks again everyone,
I feel better knowing I can come here and find some comfort and rant a bit.
Bless, JohnJ

#6 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 13 November 2008 - 08:42 AM

I'd suggest that you ask the doctor how many scleroderma patients he treats. Many rheumatologists are very informed about scleroderma.

You might also take a list of vasodilating drugs. You should be able to find a number of good past posts on drugs that forum members have found useful.

I believe I'd be long dead if I didn't take over my medical situation. Some doctors can be incredibly indifferent to pain, especially when it is connected to a rare disease. Sure there's a lot of nonsense on the Internet - but there's also a lot of good info, if you can separate the two - so keep up the research.

Protect your hands! Bandage them up so you don't injure them. You pay a high price when you bang them around.

Craig

#7 razz

razz

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 14 November 2008 - 05:41 AM

JohnJ,

I'm glad to hear you have an appointment set to see a rheumatologist. You are on the right path asking what questions to present at your appointment. Everyone's given you great suggestions, especially finding out how much experience he has with scleroderma. Good luck with your appointment and let us know how it goes.

Take care,
Razz
Live well, Laugh often, Love much

#8 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 14 November 2008 - 08:22 AM

I KNOW there are folks here, who had/have finger ulcers/infections and have often mentioned treatments that they have used and have had success with, John.

Like Craig mentioned..for doctors to dismiss symptoms with pain CAN be a pretty good indicator that they aren't familiar with such illnesses. I DO know that it's important, as Craig also mentioned...to protect your finger(s) from further injury pain. There are finger guards available that would also protect your finger. Really press for this new doctor to attend to this finger.

Again, I am really relieved you are days closer to seeing the specialist.
Please let us know how your appointment goes?

Susie
Special Hugs,

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

#9 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 15 November 2008 - 02:09 PM

Hi John

I agree with the others...make a list of everything that's been happening...even better if you have those pictures for the rheumatologist although it sounds like it's still quite sore and may be evidence in itself as the 18th is fast approaching. A good rheumatologist will run all kinds of tests on you...is it a scleroderma specialist that you will be seeing on the 18th?? On me, they ran loads of bloodwork, echo cardiograms, pulminary funtion tests, physical tests (moved my joints around and such). They looked at my skin and nail beds (sclero shows twisted capillaries, etc under the magnifying glass they use...if it's really full blown, the right specialist can recognize it without the magnifying glass as well). Good luck on Tuesday....let us know how it goes for you!
Sending good wishes your way!

#10 JohnJ

JohnJ

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 20 posts
  • Location:St. Louis Mo.

Posted 16 November 2008 - 08:03 AM

Well thank you all for the suggestions, I am excited to have the opportunity
to see someone who possibly could do more for me other then give me pain meds. The XRay taken last week has come back clear as far as any bone infection or irregularities. I have been reading about Tracleer, and read a story about a 44 yr. old female patient who had 3 DUs on her left hand, after 8 weeks taking 62mgs twice a day, they were substantially healed. I think I would like to
try this medicine before I settle on another amputation, as long as my liver cooperates. I can't believe this one sore on one finger has rendered my right hand nearly useless :blink:

#11 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 17 November 2008 - 02:18 AM

JohnJ, tomorrow is the big day. I hope your rheumatologist gives you the opportunity to try the Tracleer and see if you can get some results. Doctor's shouldn't wait until amputation is emminate to make decisions for something that could have been working and already be in your system to protect against pain, and possibly healing. I sure hope you find something that works. Amputation should be avoided if possible but you should have something helping your body fight what is happening. I wish the best for you. Let us know what is decided and how you feel it is working over the next several weeks. By the way, welcome aboard.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#12 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 17 November 2008 - 03:56 AM

HI John,
Good luck tomorrow! It does sound like you have an ulcer on your finger. I am all too familiar with them! I haven't been posting much the past few weeks because I have a few of them and typing is quite difficult. Try to keep them covered. I usually put on a antibacterial type of cream with pain medicine in it. At least it alleviates some of the topical pain. Keep it wrapped up with either bandaids or with some type of gauze and tape.

Hopefully the doctor you see tomorrow will have some helpful advice and be able to get you some sort of treatment plan. Please let us know how your appointment goes.

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#13 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 17 November 2008 - 05:53 AM

All right, LISA :rolleyes:

I just KNEW you or another would post good information for John.
I also knew there was a topical ointment for this very problem...but without
knowing the name of it, I didn't feel it would be much good to John :huh:

At any rate, I'll be thinkin' about you tomorrow too, John.

Susie
Special Hugs,

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

#14 JohnJ

JohnJ

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 20 posts
  • Location:St. Louis Mo.

Posted 21 November 2008 - 08:20 AM

UPDATE- I saw the Rhuematologist a few days ago. I went prepared to ask my questions, and she was very prepared to answer all of them. She looked me over, and according to my angiograms, she advised a surgical consult regarding partial amputation to remove my digital ulcer (DU), and discuss having a sympathectomy, and vein grafts. We found an increase of Telangiectasias on my back and 3 new ones on my cheek. She also ordered further testing, including blood tests, x-rays and the like. Also I needed to increase my Viagra dosage, and switch to a different pain medication. Unfortunately, my financial resources are limited. I explained that I was turned down by SSD, but she seemed confident that her report will help validate my claim on appeal. I also followed up with my primary doctor, and we changed my pain meds to a time released one. I did not want to do this but I was going through my other medicine too quickly, and there were concerns of liver toxicity. So all in all, I was pleased with the knowledge she displayed, but I am not looking forward to having a 3rd angiogram, and a 3rd amputation, and sympathectomy. Oh yeah, keep the stress level down too. That is easier said then done, considering most of my stress is because I cannot work and going through a financial hardship because of this disease.

#15 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 21 November 2008 - 09:09 AM

Thanks for the update. JohnJ
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#16 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 21 November 2008 - 09:19 AM

Hi John,

I have never had digital ulcers, but I wish the partial amputation, as well as sympathectomy...were two things you wouldn't have to go through.
As I mentioned, I have no experience, in this respect, but am wondering if a second opinion would/could help?

She SOUNDS as though she is quite knowledgeable, yet...I have to wonder WHY it gets to this point...amputation?
Isn't there a preventative measure(s) that could be taken...to avoid these ulcers to get to such a point?
John, I'm tossing this out to those much wiser than I...however, it just seems to me...that doctors seem too anxious to get to the point...of amputation..when I would think they would want to...in fact...AVOID this! B)

On the PLUS side of all of this...I was VERY happoy to read how your doctor responded to you, in regard to your SSD appeal... Absolutley, her input, in respect to your case, will have a VERY positive impact :rolleyes: THAT is good, good news!

Oh yes...keeping stress levels down...yeah, SURE...it's a real "easy feat" for us. Easier said than done...is right.
Of course, as you already know...worrying about this isn't going to help anything and you know how it effects your health.
Thank you for the update and please continue to keep us posted?

Susie
Special Hugs,

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

#17 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 21 November 2008 - 10:48 AM

John

Thanks for the update....hopefully she will have the impact you need on your SSD claim, sounds like she's perhaps done that before, which is good news for you! Can't blaim you at all for not wanting another amputation either...sure would be nice if you didn't have to go there and some med's would kick in instead.

What's a sympathectomy??

Keep us updated on how you're doing ok. Take care! :)
Sending good wishes your way!

#18 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 22 November 2008 - 03:02 AM

John,
Thank you for the update. She does sound knowldegeable and thorough, exactly what is needed. Hopefullt the ulcers will heal and another operation is not needed. I have suffered with ulcers for 15 years have never had an operation for them, yet.

Hopefully your ssd claim will be approved on appeal and your financial situation will get better. I totally understand about the stress....

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#19 JohnJ

JohnJ

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 20 posts
  • Location:St. Louis Mo.

Posted 22 November 2008 - 04:05 AM

Sympathectomy is a surgical procedure that destroys some of the nerves to increase blood flow and decrease pain in certain diseases that cause narrowed blood vessels.

I have already had a digital one done at the same time my right index finger was removed and it seemed to help, but did not last long as I have had the Raynaud's's manifest itself on my middle finger, on the same hand starting in July just past. This time they are going to deal with occlusions in my right arm, and palmer arch.

Lisa, I think my ulcer/s won't heal because an angiogram shows much clotting/occlusions, especially along my right arm and hand. I wish it would heal. I was hoping they could do the above mentioned procedure, and perhaps do the re-plumbing in the hand, and see if the extra blood flow would enhance the healing process. That sounds like a plan to me.
Oh and the time released pain med is wonderful, it is really helping a lot, and I've managed to sleep all the way through for 2 nights in a row :)

#20 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 22 November 2008 - 09:23 AM

Thanks for the explanation John, first I've heard of that one...but there is always so much to learn here. Glad you finally slept through 2 nights, that alone will help alot!!
Sending good wishes your way!