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Grandma Boo

Newly diagnosed

4 posts in this topic

I've been feeling bad for a few years now, and as my symptoms continued to get worse, I continued to try and figure out what was wrong.  Of course, I'm getting older, work is getting harder, and the stress in my life has been crazy, so according to doctors. it's all in my head.

 

2003 - Hysterectomy - pre-cancerous cells in Uterus, kept ovaries.  Later that year found out that I had some very weird chemical allergies.  Allergic to AZO dyes, (no more pain relief from UTI) These dyes are in synthetic material, carpet, furniture, bedding, bras, underwear, shoes, clothing, etc.  Also hair dye.  Lanolin, which is in a lot of lotions, makeup, and sunscreen.  Gold, which is weird....my eyes itch like crazy and swell shut.  Of course I don't breakout where I wear the gold, only my eyes.  

 

2012 - I was at the store, went to say good-bye to the checkout person, and instead of saying words, I just started talking gibberish, not slurring like a stroke, but just not real words.  This continued to happen along with losing words and forgetting a lot of things.  For example, I was discussing money with my son, and he didn't seem to understand what I was saying.  As it turns out, I kept saying "5 piece of paper".  I had no idea that I was saying this wrong, I obviously thought I was saying a 5 dollar bill.  Sometimes I say the wrong thing, sometimes I stop mid sentence and don't even realize I didn't finish.  I'm forgetting things as well.

I went to the Dr, and he scared me with crazy stuff, then ordered a complete vascular workup.  He stated that if that came back good, he'd send me to a neurologist.  Well, it all came back great, and when I asked about the Neurologist, he just told me that it was stress, and I'd get better once I learned how to control it.  HUH?!?!?!

Anyway, I was under a lot of stress, so I let it go.  

 

2015 - Things were not getting better, and I was getting more and more tired.  Again, everyone felt that it was stress, that is until my hands started randomly turning white and occasionally blue. That was scary, but I was so busy with work, classes, and taking care of two of my grandchildren 4-5 days a week, I failed to take pictures and give to my Dr.

 

2016 -  The heartburn started, the Raynaud's got worse, and my memory issues were getting worse.  Of course, it's all stress related.  Life got more complicated, more stressful, and I was getting more lazy.  My body is starting to hurt.  Joints are so stiff.  I work at a desk, so every time I get up, it takes a couple minutes to get moving.  

Started seeing a psychiatrist, and started on Adderall for ADD.  This makes Raynaud's worse, but of course I don't know that I have Raynaud's.

Finally I decided that I had to start seeing doctors that actually cared if I was sick or not, and made appointments.

 

January 2017 -

Endocrinologist (Hypo-Thyroid)- Finally remembered to take pics of my hands and feet.  - They immediately stated that it was Raynaud's and due to my age (48 in Feb) it was very likely that I had an autoimmune disease.  Got an appointment for May.

April 2017 -

Podiatrist - Thought I had a bone spur in my heels.  I do, but I also have broken ones on the back of my heels.  One of them is tearing my Achilles tendon every step I take.  Was placed in a boot, however, I'm allergic to the material in the boot.  So I'm miserable most of the time.

Gastroenterologist - Family history of colon cancer, went for checkup and discussed my ever increasing heartburn.  We did a colonoscopy, and scope.  Colon was great!  However, I have Barrett's Esophagus.  I didn't even know that was a thing.  

Sleep Dr - of course I have sleep apnea, because I've been so tired for so long, that I've gained a terrible amount of weight.

May 2017 - 

Podiatrist - continued using boot, now it looks like I have no choice but to have surgery, but I don't want to.  

Rheumatologist - Went for my 1st visit, Dr. took a lot of blood, said he'd call me with results.  3 days later and he calls telling me that it appears that I have Scleroderma.  However, he doesn't feel that the memory issues, fatigue and pain have anything to do with that.  Now wants me to see a Neurologist

 

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Accidentally omitted, test results are below:

 

ANA Pattern - Centromere

ANA Titer 1:640

 

From what I read, the fatigue and pain can very much be a result of the Scleroderma - is this something you deal with?  Is your memory every affected?

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Hi Grandma Boo,

 

Fatigue and pain can be symptoms of scleroderma; however, they're not exclusive to the disease and can equally relate to many other health problems. Likewise, positive blood test results on their own, do not necessarily mean that you will contract the full blown disease, as many of our members can testify. A diagnosis of scleroderma should really take into account the clinical symptoms as well.

 

Scleroderma does affect everyone differently (which is what makes it so difficult to diagnose and treat) and we have had members who have suffered problems with Brain Involvement and memory loss, which can also be a symptom of sleep apnea.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease is not straight forward and does require specialist knowledge and expertise in order to deal with all it's little idiosyncrasies.

 

Kind regards,

 

 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Grandma Boo,

 

Welcome to Sclero Forums!  I'm sorry it's taken so long for you to get a diagnosis. But I think now things will start falling into place for you. As you get the various symptoms treated, especially the hypothyroidism and the sleep disorder, it may very well ease the cognitive issues you are experiencing. 

 

Give yourself some time to adjust, and to get your various symptoms treated properly. I've had varying amounts of cognitive issues and brain fog, which has mostly been laid up to concomitant fibromyalgia, which commonly overlaps with scleroderma and other autoimmune diseases.  My cognitive issues improved a lot with treatment for hypothyroidism and sleep disorders, plus reduction in stress and ample rest.  

 

Still, when I'm tired, for whatever reason, real words simply escape me and I'm left with very lame descriptors, such as "that thing you turn pancakes over with".  At my sickest, "dishwasher" was my favorite substitute noun. As in, "Oh, no, I forgot the check writer in the dishwasher!" Which of course would mean that I forgot the checkbook in the desk.  The difference between this and Alzheimer's sorts of stuff is that we are painfully aware and bothered by the slips, and they magically clear up when we are well rested. 

 

Happily, I've only gotten better over the years, instead of worse. However my loved ones are going to have a miserable time trying to figure out if I ever do develop Alzheimer's, since I have such a well established, ditzy track record. 

 

Try to relax and have fun with it, because worrying about it only increases stress, which disrupts sleep, and here we go again. Perhaps use it as a sign that you should be resting a bit more, maybe adding some more naps or quiet time into your daily schedule. Alleviating stress is always good for all of us! 

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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