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Diagnosis Limbo


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#1 jefa

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Posted 17 November 2006 - 01:58 AM

I have not yet been diagnosed with scleroderma and it is possible I may never get such a diagnosis. Reading through all the posts and stories on the site, it is obvious that many people take years to get a diagnosis, or the diagnosis itself keeps changing throughout the journey. Each day when I log onto this site, I keep seeing names of many other forum members who have not yet posted and I wonder whether some of them might be hesitant because they feel trapped in this same diagnosis limbo.

In October of 2002 I had a total hysterectomy for endometrial cancer after several months of postmenopausal bleeding. There was no need for radiation or chemotherapy and I recovered quickly. After 6 weeks I returned to work. I made a trip to the US to visit my family and picked up an upper respiratory viral infection from one of my grandsons. Considering how quickly I recovered from the hysterectomy, I couldn’t believe how wiped-out I was by this illness. When the symptoms of the URVI waned I experienced something new to me—an acute inflammatory attack. I was overwhelmed with a general feeling of nausea, sweats, fever and fatigue and I had swelling in joints all over my body as well as in lymph nodes, tendons, etc. My general practitioner first thought it was still part of the viral infection, or that I had returned to work too soon after my hysterectomy. The violent symptoms began to subside, but I continued to have inflammation and swelling in my hands, feet, elbows, shoulders. My general practitioner prescribed Celebrex for the inflammation. I kept adding symptoms to the list (my fingers were tight and felt heavy, I couldn’t reach behind my back, my grip failed at times) and she began to question whether I was depressed and offered medication, which I refused. I showed her an article on rheumatoid arthritis, which outlined most of my symptoms. She referred me to a rheumatologist who finally saw me in September 2003. While I had the required number of clinical symptoms, with a negative RF factor and ANA he would not formally diagnose it because the symptoms were not aggressive enough to justify the use of disease modifying anti-rheumatic drugs. The initial x-rays showed no synovial erosion and while there was always evidence of elevated ESR and CRP, the figures were not drastically high. I had appointments every six months, each time being seen by young doctors on training rotation. Each was a carbon copy of the previous ones as if it were the first time I had ever been seen. Each one wrote up summaries quoting no change in the x-rays, even though only one set had ever been taken. I was given a course of Plaquenil but it had no effect.

I worked progressively fewer hours as I continued to experience a great deal of fatigue, pain and inflammation. The air conditioning in my office made my hands, neck, feet and legs cold. I typed with fingerless mittens or sock tops over my hands to keep warm. The fatigue was cumulative: I grew more tired and unable to function as the day wore on and also as the week progressed. Since May of 2005 I have felt so unwell that I could not even manage the trip to work without exhaustion and a feeling of shakiness and queasiness. Currently I have difficulty moving around when I first arise and wake up with pain and stiffness in feet, hands, knees, shoulders and hips. I spend the day alternating between sitting and standing, breaking up my minor household tasks into short manageable bits. I have considerable pain in the joints near my wrists and the joints where my fingers join my palms, especially my thumbs. The same joints are affected in my feet. Sometimes my right ankle gives under me and I worry about falling. I use a walking stick when I leave the house. I have trouble sleeping, waking up many times during the night with pain. I usually need a nap in the early afternoon, typically no more than an hour and a half. Prior to this I feel queasy, shaky and weak. My hands and feet are noticeably hotter during the evenings.

During this time we moved to another area and I had to start with a new general practitioner. At the same time Celebrex was removed from the NHS approved list and I went through a selection process to find an approved NSAID that worked (Indometacin along with Omeprazole to prevent possible stomach problems).

I requested a referral to a closer rheumatologist and had my first appointment with the new rheumatologist in August of this year. The rheumatology clinic at the hospital is worlds ahead of the old one and the people on the team actually listen to me. The rheumatologist took note of the cold hands, now also turning blue, and added the diagnosis of Raynaud’s. I told him of my web research and suggested the possibility of scleroderma. He took note of it and ran a complete panel of blood tests. He requested an MRI based on the thickening skin on the sides of my lower legs, which were feeling cold and numb and had lost their hair. He believes this is a result of lumbar discs pressing on nerves. We also talked about the problems I have been having with swallowing, reflux, sluggish bowels and abdominal pains. I had new x-rays, which showed some narrowing of joint spaces and osteopoenia, but no synovial erosion. The latest diagnosis is inflammatory arthritis, osteoarthritis of hips and knees (I have had this for twenty years), Raynaud’s phenomenon and possible underlying scleroderma, even though the ANA tests were still negative. Still waiting for MRI results.

Even though I am in some pain most of the time, I am most bothered by the fatigue and malaise. I always look drawn out and tired and used to break into tears for no apparent reason. This has improved since I started taking fluoxetine about a year ago, but I still find myself crying once in a while.

Ironically, every source I ever read had information about connective tissue disorders at the end of the list of arthritis descriptions, but I never bothered to read further with no apparent SLE symptoms or the obvious signs of CREST. Last summer I picked up an old doctors’ reference on rheumatic diseases published in 1983. For some reason I read the section on scleroderma I had skipped over countless times. I was shocked at how many of the symptoms applied to me. I was also struck with panic as the information was old and gave a much worse prognosis than is currently promised. Since then I have read everything I can get my hands on related to any kind of autoimmune diseases. This forum has provided a wealth of support and information for which I am most grateful.

#2 Steve

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Posted 17 November 2006 - 03:04 AM

Hi Jefa. I see you're a fellow brit! I'm sorry you are in this limbo nightmare, although having read your symptoms, you do seem to have a lot of the Scleoderma signs. Hopefully your new specialist will come through for you. Has he conducted a skin biopsy? This can prove very useful in a diagnosis of SD. Skin Biopsy
Good luck, and thanks for your post.
Steve.
Take Care,

Steve Dickson
ISN Assistant News Guide for RSS Newsfeed
International Scleroderma Network (ISN)

#3 Heidi

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Posted 17 November 2006 - 06:04 AM

Wow, Jefa!

It sounds like you have definitely been through the wringer. I certainly do hope your new rheumatologist stays on top of things and is able to provide you with some helpful treatment. Please do keep us posted on what the test results show.

Warm wishes,
Heidi

#4 Sweet

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Posted 17 November 2006 - 06:24 AM

Hi Jefa,

I love your style of writing and almost felt like I was reading a novel when reading your post.

I'm very sorry you are hanging out there without a concrete diagnosis, but I'm hopeful that your new rheumatologist is on the ball, and we'll be able to help you.

Although, I have a diagnosis, there are times when my rheumatologist throws out other diagnosis and then when I ask him about it, he flounders. I think this disease is a true source of "head scratching" for them as well.

Awhile ago, I decided to quit wondering if any given symptom was related to SLE, or to CREST, because it is what it is and there isn't much I could do about it. I of course don't want to miss anything and cause myself harm, so I tell my rheumatologist about every silly symptom I'm having, so he's aware too, and I leave it to him.

In reading you post I also found so many exact symptoms that we share, and so it does appear you do have many Sclero manifestations.

Please keep us posted and I'm glad that you've enjoyed this forum. It's so helpful isn't it??

Much Love Sweet/ Pam

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 luvbnmom3

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Posted 18 November 2006 - 02:26 AM

Yeah, I'm with you on the lack of dianosis thing. My podiatrist worded it well in his recommendation to send me to a large medical clinic, he said that a proper diagnosis has eluded all of the specialists I have seen here & that a visit to a large medical facility, like UofM or Mayo, & a fresh perspective is what he reccommends.

Anyways...so yeah, only I haven't had cancer but most of my symptoms, when I research them all lead me to websites on scleroderma. The only other thing, last night I was researching swollen calves & feet & kept getting tuburculosis (sp) links....which I doubt...lol.

I like what Sweet had to say about worrying what is related to what.....although I think to some extent, for me, it will be easier said than done!