Rheumy appt tomorrow

[Winnie]

I am anxious about seeing my doc tomorrow.  I have not seen him since November.  I Have a list of changes a mile long to discuss with him and will only get 50% discussed.  He has a dry, somber attitude, but is one of the best in my area.  What he says, I feel is not to be second guessed.

Since November, I have "cured" my constipation to the point that I am now the opposite. I feel my tummy is in shock from experiencing chronic constipation for 8 years.  I have a naturopath doc which my rheumy does not approve of.  This doc has found my food allergies and an unidentified parasite.  I am also on Zoloft because I just couldn't handle the crying anymore, eating changes and the fear of the unknown.

Today, I guess, my Zoloft is not working, but with the exception of increased dryness and possibly the cause of my tummy troubles, has made life more pleasant in the past couple of weeks.  I tend to spend too much time on the computer looking up scleroderma which is my worst fear.  It is just one of those days, that I wish I had my life back and wish that someone would tell me that it won't get worse.  Summer is the worst, because I am not teaching and have more time to think.  Sorry for the negativity, I just needed to vent.  I know it will be better after tomorrow.

Winnie

[eye2dry]

Winnie,
Your lucky you seem to not have to go to check ups so often.
Is yours every 6 months? Do you have to have labs drawn in between visits to check your blood counts d/t Plaquenil?

I have always been scheduled every 6-8 weeks and that I  feel is way too often.

I hope you can get most of your questions asked and even better I hope you get them answered!

Does your rheumy disapprove of internet searches? Mine does. He once said to me "if you have any questions....you come to me".


eye2dry

[Scottietottie]

Hi Winnie 

You may do this anyway but if you don't, I suggest you go armed with a written list of current symptoms and also a written list of questions you want to ask.
When you see the rheumy work through the questions and write down the answers because it can be hard to take everything in and to remember it.
Good luck! Keep us posted.

Take care - Scottie 

[Winnie]

eye2dry- Yes I have bloodwork done every three months.  I saw him last July, for the first time, then August, November and now May. I don't know when he will want me to schedule an appointment next.  I have no idea about his feelings about the internet.  I am not sure I want to ask.  He has given me no help with managing dryness, no information on what to expect.  He just said the plaquenil will either slow down or stop the progression.  I do like that I have a direct line to him.  I can call him asap.

Scottie- Yes, I have a list.  I just wish that tomorrow was over already. 

Winnie

[eye2dry]

Good Luck Winnie.

You must post what went on at your visit.

eye2dry

[Winnie]

I had a 3pm appt and finally left the building at 5:45.  Interesting appt in general - I discussed my food allergies, parasite issue, loose bowels and all my sicca symptoms.  The first thing they asked me is if I went to the gastro and I told them that he thought it may be the plaquenil.  Needless to say, that was next:  reducing it from 400 to 200 daily.  I have a few more telangectasia on my hands which indicate scleorderma, but I don't think the plaquenil will stop that.  I guess time will tell.

It was very difficult to tell them that I was not handling life in general and that I was taking zoloft.   He indicated no relationship between food allergies and autoimmune disease but there is a correlation between gluten and autoimmune disease.  They looked at my previous inconclusive genetic testing for celiac and believe that I have some form of problem with gluten, which is more than my gastro will say.  So I will linger along in life not eating gluten, dairy, eggs and peanuts.

I don't have to go back until November and in October, I have blood drawn.  It was every three months and now it is six months??  I did get him to test me for Lyme disease, although he knows his stuff about lyme and indicated that it is highly unlikely that I have it due to my location.  He encouraged me to get a coloscopy.  I see my gastro in June.  Yuck!!

Winnie

[mshistory]

Winnie, I'm right there with you on the colonoscopy - I'm having one (and an upper GI endoscopy) in mid-June. Seems like a lot of us are having them lately! Just remember - we'll be asleep and won't remember a thing  Oh, and find a good book to read for the day before since we'll be spending the entire evening in the bathroom 

[Winnie]

mshistory
I'm unfortunately very familiar with these procedures. My only complaint is that I had an upper last October and they found issues.  He believes I am getting Barretts but tested negative for it, so I have to have an upper every year.  Now they want me to have a lower and I prefer to have them together - one charge, one pain.... but my insurance won't pay for the upper until October.  He probably won't want me to wait for the lower until then - more opportunity for a flare....

Winnie

[Patty]

Hi Winnie,
Do you have other symptoms of scleroderma? There are multiple causes of telaniectasia (?) Maybe you should ask about them next time so the doctor can either confirm a concern or put your mind at ease about them. I have tons of them (really) but don't have scleroderma. I know how hard it is to wonder about these things and wait to see what develops.
Patty

[jazzlover]

HI Winnie... glad it went pretty well! Be sure to go to  celiac.com to print off lists of sneaky ingredients that contain gluten!!!
MANY GI docs are stupid when it comes to celiac disease or other dietary help. Crazy, huh!? If it doesn't show up on a test, they wash their hands.

[Winnie]

Patty,

I have telangectasia on my nose and hands but not many.  They go away if you push on them.  I read that scleroderma spots are typically in those locations.

I don't have a confirmed renauld diagnosis.  I don't see color changes in my hands, if so not often enough for me to notice, but there are changes going on because I hate going grocery shopping to shop in the "cold" departments.  It really bothers my hands if I handle cold products.  I let me kids go down those isles while I put a sweater on and go down the other ones. 

I have upper GI issues that have recently been worse but I can swollow normally.  IBS-generally constipation or something like that intertwined with food allergies.  No other problems except sicca and a positive ANA.  That's enough.  Thanks for letting me see things more clearly.  I will discuss it with my doc at the next appt. 
What else could cause the red spots?

Jazzlover - Thanks, yes gluten is sneaky.  There are so many trivial ingredients in food that doesn't need to be in them.

Winnie

[Patty]

Hi Winnie,
Well, I am right there with you when it comes to worrying about weird symptoms as I have done it a lot. Rosacea, varicose veins and vasculitis can cause them too. There may be other causes I don't know about. Autoimmune stuff is so complicated. Symptoms can vary and diseases can overlap. Sometimes I ignore a thing thinking it is nothing and then find out later it was important. Other times I worry about things that turn out to be nothing. It's tough! Make a list and ask your dr about all your symptoms and concerns - that way you can have a little more peace of mind. It the drs job to answer your questions.
Patty