To call or not to call

January 11. 2013

That is the question I am posing to myself. Been having some very weird Hashimoto's Encephalopathy issues lately. Such as the other day, while watching a cooking show where they were whipping up sweet potatoes and I needed to use the rest room as I pushed to door open to go in (it is white) I saw this large smear of sweet potatoes, as I sat in there thinking, where did that come, we have not had any, it must be something else, so when I got out of the bathroom, and looked at it again to wipe it off, it was gone, in fact there never had been anything on the door. My brain must have transposed the sweet potatoes I was watching on to the door. This sort of unnerved me that my brain was doing this. Along with the tipping issues (balance) I am not sure I should call the neurologists office or not. Hate to go in as I am afraid of another round of IV infusions of steroid's. So I will see what I will do.

When you have autoimmune diseases you never know which one is acting up. They all seem to overlap each other. Symptoms can be so much the same, in fact they can cause the same symptoms sometimes. So how does one know which is doing what. In fact how do the doctors know which one is doing what.

Well I said I would start with my autoimmune diseases and discuss what I have and what I have gone through hopefully to help someone else.

About seven or so years ago, I started having sore fingers, they ached, my thumbs ached the worst, I thought it was from moving racks around for over 20 years (as I was in retail clothing business) so we were always moving things around the stores, I am short so I used my thumbs to help carry the racks.
but soon I started to get tired, I mean dam tired. No matter what I did or did not do I was tired, and my thumbs still hurted. It got so bad that one day before Christmas I was sitting in my truck in front of our local Walmart and I looked at the store and thought I just can not go in I am to tired to walk from my truck to the store. Now this was not like me I am like the energizing bunny go, go, go. I could out work someone 1/3 of my age. I thought it must be stress related so pushed through and went in and forced myself around the store and went home. Decided then and there to see a doctor after the holidays for which I did.

The doctor found I had severe hypothyroidism along with the beginning of high blood pressure. She prescribed thyroid meds and I thought ok, now I am going to feel better right away.   Well not to be so, my fingers now hurted worst, I kept gaining weight some from the fact that I was so fatigued and other from the hypothyroidism. I just kept going though, because I am never sick. But it got so bad I could not use my fingers especially my thumbs to hold things, pull up my pants, put my bra on, had to buy a front hooker one because of this. Still thought stress and the hypothyroidism. Started a new job, felt even worst, my hands now looked as bad as they felt, swollen, red, blotchy looking, just ugly, and I was working in a jewelry store and had to use my hands all the time to show people rings and such and was so embarrassed of them. I had people comment on them daily. I tired every cream, every soaking concoction on the market to no avail. I tried to hide them when people were around, I could not use them to unlock our cases with the jewelry in at work because of the pain and swelling.
I would drop the jewelry because I could not hold onto anything tight. Right about now I started with another autoammune symptom.

I developed colitis, I could not go anywhere or do anything without the embarrassing symptoms of colitis. I would be working with customers and have to make an excuse to go to the back to use the bathroom, and with colitis you never know how long it will take and if you will have time to make it to the bathroom without an accident. I had a colonoscopy done to see what was the matter and was dx with a rare form of colitis called Lymphocytic which was also an autoimmune disease.

Around the same time I started to have sore joints, and muscles, it started to feel like I was carrying around a 500 pound weight with me. I dragged. I was tired. I was sore.  I would have like hot spots, first it would be my ankles, that hurt like heck, then it would be my elbows, etc. But the dragging feeling was the worst. Then it started I could not go up an incline, even one step such as a low curbing was too much for me. My arms could not stay up long enough to wash my hair. Still my doctor blamed it on stress. (As there was a lot of stress in my life at the time). At work I dragged myself through the day, barely. when I got home, I had a hard time to get out of my truck and to go up the steps I had to drag my body up the steps by pulling on the railing and going one by one.

I had from October at this time to March with hives from my ankles to my butt, then went up to my shoulders and bib type area on my chest. It itched so bad I thought I would dye. I again tryed everything, nothing worked. I went to a doctor who gave me steroids but they only helped temporally when they were done the itch and rash came back. I also had such skin sensitivity to tags, material, I had to change to all cotton, cut all tags out of my clothes and stop wearing nylons to work as I could not stand the feeling anymore. I had to stop wearing jewelry also. It stopped by its self in March of the following year.

Now I started to have a sensitivity to the sun, I could not be outside at all without getting red, and feverish feeling. My legs would swell, face, etc. Decided to go see a dermatologist for the hands and the sun thing, he did dx me with photosensitive. But thought I might have lupus, so started with every blood work you can imagine, as this went on for a few months, and my arm weakness and leg weakness got worst, I would also brake out with a red hot flush that would be inside both legs from ankles to knees and would last for a week or so and the same with my forearms, they would be hot to touch and fiery red. My ANA came back positive and speckled pattern so the Dermatologist thought for sure it was lupus in fact told me I had it but did not want to put it down because I would never get Insurance again with that on my record.

Well then started another autoimmune problem. Raynauds disease my hands turned blue, I mean a true blue color, it would happen when I was cold, or stressed. Then they would be white, red, but it was awful I was having a hell of a time with this, then my feet started and my nose. Once at work I looked into a mirror and my nose was blue, nice look for a fancy jewelry store. I started on a calcium channel blocker to help control my Raynauds disease. This did seem to help they also put me on pentoxifylline which is a drug they put you on for this disease. About this time I asked for a referral to a rhuematolgist.

Went to the new rhuematolgist who looked at all my blood work ups and my hands and gave me a dx of scleroderma another rare autoimmune disease.