JohnJ

Finally Going to See A Rheumatologist

23 posts in this topic

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)

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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!

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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)

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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 :)

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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!

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John,

I am glad to hear the pain meds are working for you. I choose not to take anything for my ulcer pain not because I can handle pain only because I am really sensitive to them and I have children to take care of. Otherwise I would! I have three ulcers right now and I am in extreme pain. The cold weather here does not help one bit either!

 

Please continue to keep us posted on the next steps in your care.

 

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)

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Wow I truly commend you, dealing with this and raising children on top of it :o I feel bad when I am in a foul mood and my grandson is around, but I just try to roll right along and put my problems to the side. It actually helps teaching him to play the drums, as I concentrate on something other than my pain. Bless all you moms out there :)

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Hi John,

 

Glad you have gotten some answers from your doctor, especially SSD. Am trully sorry that the finger ulcers have become so serious and for the procedures your doctor has recommended. I have had finger ulcers for the past few months off and on with a worsening of raynaud's. The rheumatologist said my ulcers were related to calcium deposits not raynaud's. She also put me on plavix for raynaud's and other vascular problems and wondered if your doctor has ever suggested that as a treatment. It is not a regular treatment for raynaud's but I have read it is used sometimes, either plavix or aspirin. Each of us have different treatment plans but just wondered.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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