Hi mary ann, so sorry to hear about all your troubles and your poor girl too. You must be under a lot of stress with all this going on. I hope everything comes right for you both and you get some relief.
I havn't been well, some days i can hardly get off the soga. I am having a lot of pain, allergies, headaches etc. Yoday i am feeling a little better.
I freaked out a bit last night. My friend stayed over and while i was making some toast, i noticed my hands under the halogen lamp. The top of my hands the skin is all tight and shiny. I know what it is....scleroderma, and its scaring me. I've noticed it before under certain light, but it has got worse.
I am into my second week of doing a candida diet, no sugar, no yeast and no dairy. its been hard, but was recommended by a herbalist. I keep doing research hoping one day i will find the key to getting better. I checked up candida and did the test and i have a lot of the symptoms, so its worth a try.
Has anyone heard of stevia? Its a natural sweet herb used for sweetener. It isn't sold in this country but i want to order some. It has no calories, and lots of beneficial vitamins and minerals.
Love and hugs to everyone x

Hey, guys,

Just catching up on some recent posts.... MT, you must be so worried about your daughter... I am glad it's looking like a heart cath would work, though, and it is really good that you stayed on top of this problem until it got diagnosed and you got a treatment plan. I really appreciate how you manage to keep your spirits up!

Yes, it does seem like there are two strategies we use-- either Plaquenil/Predinsone or pain meds. I favor the latter strategy, or if the former, Prednisone, mainly because most of you have complained of side effects from Plaquenil.

Jaqui, I don't know about that shiny skin if it hasn't been diagnosed. Skin does get shiny over age naturally, it's not always scleroderma, and though we know that one of us is having a really bad time with slceroderma, I'm not sure that the course of it is very predictable. I can imagine it is very upsetting, and I hate to think of you worrying. Of course, I am projecting, because worry is one of the issues that I battle most myself. Every day I don't worry is a day I'm winning.

I had a fairly distressing meeting with my rheumatologist yesterday. The guy saved my life, but he's also a bit crazy and I dread seeing him... there was one point in the conversation where he was suggesting pulling me off pain meds, and putting me on...

a) An antipsychotic
b) An antidepressant
c) Flexeril

This makes no sense-- Flexeril is a debilitating muscle relaxant with a really high abuse/addiction potential. And I do not need any more drugs with psychoactive properties, it's just dangerous because we don't know how the cognitive issue works in MCTD, it's just tinkering with stuff no one understands.

And oh, yeah-- I still feel incredibly foggy, but I am still getting As and Bs (or the equivalent-- the school does not give grades) on all my tests and exams. The only things where I've gotten less than a B-- which in this school means failing-- are little quizzes that do not count towards my evaluation in the course, they are self-graded, they are just meant to get us tough for the BBS examination years from now. So why the hell would I want to start taking an antipsychotic?! You can understand how I would find this disturbing! I mean, okay, I'm crazy-- that much we all know-- but not that crazy!

One big problem I have with this guy is that he does not believe that headaches and many of other other symptoms we complain about are caused by MCTD. I think this really common in rheumatologists, because they are scientists, they want to see patterns in how immune response works, they want to believe they understand the way this disease operates-- but no one really does.

Anyway, I was thinking I wanted to wait a while before suggesting this, but I don't want to wait any longer.

I would like to do an informal, anonymous study. See my separate post, and see what you think. It would be a multi-phase process, and we might have to run the whole thing twice. I want us to have copies of this thing that we can wave around in front of our doctors if we want to.

Thanks,

--Catalyzt

Hello everyone.
Also picked up our GS cookies today.....now trying hard not to eat too many :).
MT, sorry to hear that your daughter will have to go through this procedure (and you, too). Avoiding open heart surgery sounds good. You will both be in my prayers. Hope your back & hips feel better soon.
& hope the rain holds out for the boothing :).

Jacqueline - (my daughter's name is also Jacquelyn (spelled a little differently) - pretty name!
I can imagine the new symptom is frightening. Hang in there. Whenever I am freaking out about a new symptom, I am always trying to remind myself that the stress won't help. (although easier said than done, I know). I'll be sending positive thoughts your way. Please keep us posted on the new diet - I hope it has some good effects. About the stevia - yes, I have heard of it. I nurtritionist actually recommended that I use that or xlitol (sp?) as a sweetener instead of the artificial stuff. I think you can order the Stevia online. If you have any trouble finding it, let me know - I'll look for a site....

Everything is ok here. My son is limping quite a bit - will see an the orthopedist next week & see if we will take any steps for treatment or therapy, or just "wait & see". Weather is really nice today - hoping to get a walk in - that always helps me (physically & mentally!).
Hope everyone out there is ok....
hugs to all -
Marianne

Hey Cat -
When I hit "add" & checked to see if my post made it on, I saw your post - I must have been typing when your post went up. Good to hear from you -- I hadn't been on in awhile -- have been going through some past posts to get caught up. Sorry about your appt. Rheum. yesterday -- sounds upsetting. You're survey sounds interesting.... You mentioned "headaches & other symptoms"....I will say that you have made me much better informed of the cognitive side of these conditions. I definitely have brain fog some days. & I have to really pay attention to certain things (like where I park my car!) I check & recheck & make sure I have a point of reference before I go into a store, so that I can find my car when I come out!!) HA! Some days this is worse than others, but I have been wondering about this for some time (is this normal? Am I losing my mind? :)!) and now realize it must be part of all of this. Anyway, would be curious to see how everyone responds to a study.
Glad the grades are going well -- you must feel good about that.
I'll look for the separate post on the study.
Take good care --
Marianne

Hey, Help,

Thanks for your response, I guess our posts crossed in cyberspace...

I don't know about childhood hip problems, but I know a little about scoliosis, which is an orthopedic back problem that a childhood friend had, might be something similar. It can be very serious if untreated-- but my friend got very early early treatment, had to wear a brace for years. It was quite inconvenient at points-- and sure, it was a little awkward dating and stuff at first! But my friend became an avid sportsman, and now swims competitively in Long Island, beating college kids in yacht club swim meets! (He's 50, a year younger than me.) He even took up skiing again, which would have seemed impossible when he was 14. He also has played rock music for about 40 years-- longer than me-- and has probably played about 300 club dates, (I've only played about 200) bigger clubs, and played on at least ten albums. I hope your son's problem turns out to be something that is equally or even more manageable...

And yup-- those are EXACTLY the kind of cognitive symptoms I have noticed. What's more, I believe you reported those on this board before I had gone into too much detail about my own symptoms, so I don't think I was "talking you into" any symptoms.

As for parking lots, yeah-- just a few weeks ago I was leaving class, I got in my car, shouted goodbye to my fellow students out the window...

And drove up to the roof instead of out the exit. Sorry, but that just is not normal! This just seems like a very specific deficit, and I even have read some theories on why this might be happening, but I'm not going into any more detail because I won't want to influence the results...

Best,

--Cat

Hey Cat --
ok, so I am laughing a bit with the "exit" up to the roof.....only because I can totally relate & then am picturing you shaking your head in disbelief as I do every time something like this happens!! :)

Interesting about your friend....we should know more about my son, soon. They seem to think it's a hip thing, but need a little more time & add'l x-rays to confirm. Dr. did mention a possible brace. Also suggested swimming at the initial consultation, just saying that it's a great exercise, uses full range of motion but easy on the joint. So we put him in swim lessons recently, and so far, so good. Maybe he'll be as good a swimmer as your friend! But I guess for now, I'll just hope he likes it enough to get through the next lesson! :)

Ok - again, will look for the study.
I think we must have caught up on some rain/water levels recently??
Have a good day -
Marianne

Marianne-
Thinking about your son's hip. A child at our church had hip surgery recently. I guess he is about 7-8 yrs old. They tried some other stuff first. There is a hip problem kids get that often will just go away after a period of time but in some kids has to be operated on to prevent problems in the future. The Dad said it was a degeneration of the hip. He gave me a name and I dont remember what it was. Could be similar to your sons problem. Let me know when you find out and I will contact these people and get more info from them. By the way, this kid is running all over now.
Mary Ann

Jacqi-
My friend swears by Stevia. She gets it at one of the local grocers, but says it is hard to find. Let me know how you like it!
Mary Ann

Cat-
I took Flexaril a few times. Last time I did, I took it at 7-8PM, went to bed, got up and went to work the next day at 7AM and woke up at 11AM. I did not remember how I got to work or anything I did that morning. Wont take it anymore!!! Does get rid of muscle spasms.
Mary Ann

Hi all
Mary Ann, sorry your having to get through so much especially with your child .You are a real inspiration . It takes so much energy just trying to cope with your own illness as well as anothers .I know this too as my daughter has had Jra since the age of 3 .Great to hear they can avoid the open surgery .I like it when there is a plan of action .
Since I have had so many symptoms and part diagnosis over this 9 months I kind of find it reassuring in a strange kind of way I m not losing my mind /depressed as the good ole doctor put it for months and months hearing that many of you others have the brain fog .I even find it hard to recall words and there meanings at times .I hear you Cat on this one .I didnt mention this to the rheumatologist because I didnt want to get another label which they might focus on more . They have diagnosed mctd /crest and sjogrens and I understand that crest id the limited scleroderma but Jacqueline I havent got the shiney skin I have the taglatia and my skin feels tighter at times.I wonder about diffuse as I have the lung problems but doc says he wants me to see a gastroentromologist that the gerd is very bad and that the muscles in the oesophagus are very weak .I find it hard to decide when they mention steroids if to move to those or stay on the plaquenil and pain meds .I find it hard to make that decision
Love and Hugs to all xx D

Hi, thanks for your comments. Dorry most of you are also having a bad time at the moment...
I have managed to order stevia from amazon i am looking forward to trying it. I have also ordered some seeds so i can grow a stevia plant in my garden.
The hand thing is definately scleroderma. I have been trying to ignore it but every now and again i notice it more in bright light. My hands get hard to straighten out and the skin looks very shiny like glass. Sometimes it seems worse than other times. I havn't discussed this with the doctors and i didn't want to know (ignorance is bliss attitude) MY biggest worry is it spreading. Sometimes the skin on my forehead feel tight too. I don't know what kind it is. I didn't realize you had it too dawn.
I can relate to the cognitive problems you desribe.Something i don't mention to the doctors either as i don't want to be labelled or offered drugs.Thankfully i get clear headed times too and use these to get organized again (to a degree)
Well done cat on your good results. You seem to be doing brilliantly. Its strange because when i went for my reflexology exam i felt dreadful, my brain was foggy, and i was exhauseted yet i got an amazing 93%. To this day i don't know how i did it. The same thing happened at art college...
Hope you all have a restful night.
love and hugs