undiagnosed + Raynauds

[Anonymous]

I began in January with Raynauds – typical symptoms plus continually swollen hands. In March began swelling in feet which has moved progressively upwards and is now at the lower rib cage. It involves skin tissue not joints.  Have been on 20 mg daily Prednisone but it seems to be having no effect on swelling which has continued to move upward. In all my reading this is not something mentioned. Anyone have any information on this problem?

Back again and no longer undiagnosed. Rhuematologist dx is schleroderma with Reynauds. (My wife and I think he is an exceptional Dr. He calls me at home to check on progress.) He put me on Prednisone for a limited time to see if it would decrease swelling – no luck. Has me on an ACE inhibitor and a channel blocker for blood pressure. Also started me on Minocycline 100mg twice daily. Has scheduled an appointed for me at a nearby reasearch center and is working on sending me to a larger center asap.

He feels my schleroderma is progressing rapidly and is watching closely. Has done every test I can think of to pinpoint problem. So far internal organs are unaffected.

The swelling is unreal. I can barely walk and losing muscle strength rapidly. Haven't been able to do any woodcarving for several weeks.

This site is a lifesaver. Jim

[JBJBJB]

I could compare notes with you except I had Raynaud's afterward and I have not had any feet swelling. One thing I regret I did not do is to have my lung CT Scanned in the very beginning, so that there would be a comparison of how fast my lung got involved. The X-ray they did for me could not tell anything about early stage of fibrosis, only CT scan can.

You may ask your Rheumy to closely monitor your lung function with CT Scan as a baseline, also your liver, kidney, esophagus and eyes.

By the way, I was dx with MCTD/SD. I am still surprised how fast it has progressed within a year and half since I was first diagnosed.

I have been trying to stay away from high dosage of prednisone which could evetually damage my kidney, made me a poor candidate for AP treatment. I am really glad I did not really get into a higher dosage. Thank to my dear mother who is a retired MD, who warmed me not to take higher dosage P.

The AP doctor said my case may be treatable because it is still considered as “early stage”.

JB

 

 

[Goodwife]

Hi,

Sounds like Scleroderma or other connective tissue disease.  I would read all you can on this website, along with reading the book “Scleroderma, a Proven Therapy that Can Save your Life” written by Henry Scammell.  Armed with this information, I would go to your doc and discuss AP treatment – assuming by then  that you have a definite diagnosis.  It seems like whatever your diagnosis, it is in the early stages.  But you want to be proactive and treat before things worsen. Good Luck to you!

[JBJBJB]

I agree with Goodwife. Read all the books she mentioned, and also evaluate all the treatment options from all the resorces. If you want to do AP treatment, I highly recommend you find a good AP doctor to get a right start. Don't be surprised your rheumy may tell you  “I never heard of it”, or they refuse to discuss this treatment option with you. Here is the link of my story of AP treatment if you want to use it as your reference: under the topic: Dr. “S” in Iowa

 http://www.rbfbb.org/view_topic.php?id=340&forum_id=1

I also plan on going to visit my Rheumy on a regular basis so that he can monitor my progression or improvement.

In case you have lung involvement, get a good pulmonary specialist to monitor your lung.

JB

 

 

[caroline]

look into fda approved equipment–ask your doctor for an Rx

1. laser light therapy (MedX is one manufacturer)-for pain, inflammation & open wounds

2 matrix electroceutical delivery system -replaces nerve blocks

used by rheumatologist Dr G, Hubtington Beach, Calif.

 

RBFV Edit:  Full name of medical doctor and telephone number removed to comply with forum rules, please contact this user via PM for full name and telephone number.

[MaryP]

My SD began with swollen hands and feet one day and Raynauds 3 months later.  The rheumy said that there was something defniitely going on, but I didn't meet the clinical diagnosis for any one disorder.  I thought all my symptoms pointed to SD, so I researched and found AP.  I did not begin AP until my SD diagnosis about 6 months later.  I often wonder if I had begun AP 6 months sooner than I started, if it would have made a difference in my recovery or severeness of disease.

You are smart to keep on top of it.  Good luck!

[Author]

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