March

Could Scleroderma cause this?

12 posts in this topic

:thank-you: I am very happy to have found this forum!! I have read so much on the WWW and it is good to connect with others in the same or similar boat. Okay - here goes my story...

 

About 25 years ago developed Raynaud's in my hands (I was about 34 and a heavy smoker). I quit smoking but no change in the hands. Sometime in 1998 or so, I developed double vision and was referred for a complete work up. Nothing of significance was found except a high ANA which the specialist said to keep an eye on. Started back smoking, quit, started again...The double vision went on for a year or two and finally a Pediatric Opthamologist gave me a Rx for coke bottle glasses and the double vision resolved. Put on a lot of weight after quitting smoking finally (80 extra pounds). Got bi-lateral carpal tunnel surgery. Fingers were swollen and painful - went to Rheumatologist who diagnosed me with mixed connective tissue disorder. Got shots in my finger joints (ouch!) on and off for about two years. Had Roux-en-y Gastric bypass (2005) - lost all the extra weight but knees still hurt. Go to Orthopedic surgeon(2006)and x-ray shows no cartilage in left hip and not too much in right hip. Got left total hip replacement and was told that my right knee would be better now. It wasn't so got right hip replaced (2007). The GERD went away (or so I thought)after the weight was gone. Routine testing showed Hypothyroidism (runs in the family) got meds. Eating all sorts of foods and occasionally getting "dumping syndrome" (high blood sugar followed by dumping of insulin resulting in low blood sugar). One evening went to sleep early feeling shaky and later when my husband came in, I was having a seizure, foaming at the mouth, unresponsive and making a terrible gutteral sound. He calls 911 and I am taken to the ER. My blood sugar was 21, temp 71 and bp was depressed. The glucose bought me back. Started seeing an Endocrinologist because episodes kept happening. Lots of tests - referred to Johns Hopkins for evaluation - have partial Pancreatomy and Spleenectomy (2008). Blood sugar seems to stabilize but fatigue is overwhelming. Food starts to "get stuck" and have to vomit for relief - even cottage cheese gets stuck at times. Gastro doctor scopes top and bottom - find Epstein Barr virus, diverticular and esophagitis. Stess at work, fall asleep in car at lunch time, dragging throughout the day. primary care physician diagnoses Mono says that is why I am so tired. Months pass and I am really dragging and blood sugar drops if carbs are too high. Rheumatologist says I have Limited Scleroderma but also tested positive for diffuse. Got an appointment at Johns Hopkins in two weeks to see what's what. Am out of work on short term disability and am resting. Feel pretty good. Any idea if all this stuff is related? Aches are shoulders, elbows, wrists, knees. Tight skin on hands, rash on legs and other weird things (could that be due to age?) Do you think Hopkins will figure it out? Thanks for reading this massive first post!


 

Mary Alice

"Right is right, even if no one is doing it. Wrong is wrong, even is everyone is doing it." - Augustine

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March,

Welcome to the Sclero forums! I'm glad that you decided to join us after having visited a few times so you already know that it's a great place for information and support.

 

I'm sorry to read your laundry list of everything you are having to deal with and have been dealing with for years. You obviously are a very strong person emotionally. I've heard a lot of positive things about John Hopkins. A friend went there after suffering for 8 years and not knowing what was going on. They were able to diagnose her with scleroderma and polymyositis on the first visit. They have an excellent team of doctors and specialists, so probably will be in very good hands.

 

As you probably already know, scleroderma is a very difficult diagnosis. Everyone is different, different symptoms, different bloodwork, different skin, different everything it seems. You have a lot of the same symptoms I have, but also a lot of symptoms that I don't have, so I certainly wouldn't say one way or another - I'm no doctor. Be sure to take this list of symptoms and conditions with you when you go to John Hopkins and of course, all your tests results. To have everything consolidated into one list would certainly be better for the doctors than having them filter through stacks of paperwork.

 

I'm glad that you are feeling better now that you've had some rest. That should tell you that you've been working too hard and probably under too much stress. Please take it easy, get even more rest and let us know how the visit to John Hopkins go. We'll be thinking or you.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Wow, you have been through a lot! Sure glad that extra rest is giving you a little bit of a break with some things in between, every little bit counts. I have never been to John Hopkins either but have heard nothing but good things...I'm convinced as well that you will be in the best of care. As Janey recommends, bring a list of everything with you for ease of discussions....and I'd bring your husband or a good friend to help you with a list of all your questions. They can write things down for you because guaranteed you'll come out forgetting to ask this, or that, or just not remembering exactly what the answer was they gave you. Hope you keep us updated on your visit, good luck with it.


Sending good wishes your way!

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:D Thanks for the warm welcome! Sorry about the long list of events, seems crazy but I think all these things are somehow connected.

 

Thanks for the suggestions about my medical records...needless to say they are huge. I will contact those doctors who have treated me and get the records faxed to Hopkins. Will report back with what I find out.

 

In the meantime, I am having an echo-cardiogram, pulmonary function tests and chest x-ray. I think the doctor has my baseline so I guess they are going to compare? Hopkins wanted the tests done prior to my appointment. My last echo-cardiogram was in 2006. I guess it was okay.

 

I really like this forum - thank all of you!


 

Mary Alice

"Right is right, even if no one is doing it. Wrong is wrong, even is everyone is doing it." - Augustine

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Hi March,

 

Welcome to our family. I'm so glad you posted. Goodness you do have a lot going on don't know. Like Janey said, this disease can be so different from person to person, that sometimes it's so hard to know what is the disease and what is age related. I'm excited that you have an appt at Johns Hopkins. I will be waiting to hear what kind of advice and treatment you get. Do please keep us posted.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Welcome to the forum, but so sorry to hear how bad you have felt. Who are you going to see at John Hopkins. I live in NY, have CREsT. I did go to John Hopkins and saw Dr. Wiggly. I had already been diagnosed and I like my local Rheumatologist, but was so impressed when I saw Dr. Wiggly. He spent almost 2hrs. with me, went over each aspect of CREST, areas of the illness that affected me and areas that did not, and areas that needed to be continually followed closely. He explained what needed to be done if anything for each area, and made some recommendations back to my local Rhuematologist. He wrote down everything we spoke about in terms anyone could understand, which made it much easier to remember & to describe to other Dr.s and significant others what happened at my visit. Good Luck with your appt. Keep us posted. I hope you feel better soon. Patty

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:VeryHappy: Hi Patty!

 

I am a former New Yorker!! Moved to VA back in 1987. How's the weather?

 

Thanks for your good wishes and the info on Johns Hopkins. I will see Dr. Boin at Bayview. What is kind of preliminary exam do they do there?

 

Anyone know if red marks, about the size of a pinky tip on the legs mean anything? I had one for a year or more and just noticed a second one. It looks like a lesion whose scab is off but doesn't heal. I've had a rash on my legs for about 4 years but the doctors all dismissed it as a dry skin condition.

 

One more thing, for years on and off I had frank blood like a red line. From time to time there would be some blood in the toilet or on the tissue but very little. I was scoped and there was nothing remarkable - no hemorrhoids but he did find an anal ulcer. No pain though. Do you think this is "just one of those things"?

 

Sorry for the graphic content but inquiring minds want to know!! :mellow:


 

Mary Alice

"Right is right, even if no one is doing it. Wrong is wrong, even is everyone is doing it." - Augustine

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March, I haven't given you a welcome. To bad you had to come join our forum. Sure glad you did though, sorry for your need to have to. Maybe it could be diverticular problems causing the slow bleed. I have issues dealing with that once or twice yearly. I have to go on antibiotics and this seems to rectify the problem. Some times it is worse than others but, do let your doctors know about this as they can run a fecal culture to make sure nothing serious is happening. Welcome aboard!


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hello March

 

Welcome to the forum! This is such a great place to be!

 

What a lot you've been through, it's a good thing you have scleroderma experts on your case now. :emoticons-yes:

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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:thank-you:

 

Thanks for the warm welcome!


 

Mary Alice

"Right is right, even if no one is doing it. Wrong is wrong, even is everyone is doing it." - Augustine

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I'm so happy you found us, too, March!

 

We are one big family of folks from all over the world, who really care about one another. We're glad you're here so we can support and offer help when we are able.

 

I surely hope that you are able to get answers to questions you have concerning what you mentioned in your post.

 

In the meantime, I'm sending {Gentle Hugs} to you to use whenever you need them :emoticon-hug:

 

Thank you for sharing, Mary Jane and we hope you feel as comfortable here as we do.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi March,

 

I'm just popping in to welcome you to the Forum too. Sorry I missed you when you joined.

 

Not long until your appointment at Johns Hopkins - will you post and let us know how that goes? I've also heard great things about their program and doctors. Good luck with getting some answers and relief!

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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