MCTD Support Group

Hang in there, Dallas. Definitely wishing you luck here, glad you have some help with the drive.

I guess plaquenil does help some people, but it does seem like a lot of folks have issues with it-- doesn't work well, works erratically, or side effects. Let us know if rheumy comes up with anything, and hope you can enjoy the trip a bit.

School is very busy, and I am in probate purgatory, also moving very slowly cleaning out mom's apartment in NYC. I think I have the Garrison Keillor of probate attorneys, every conversation with him seems to take forever and be straight out of Lake Woebegone. "Well, I went to the surrogate judge's office... he's been there 30 years... the courthouse was built in 1855, and she's quite a character. They say that one time, he actually..."

A few minutes of this, the brain fog kicks in and I can't remember why the hell I called him.

Really looking forward to my next root canal. The pool is getting very cold, I can only stay in for a few minutes, and my tooth is killing me every time I get out. I'm afraid to get it done during the quarter... if it's anything like the last extraction, I won't get through finals.

(For all our new members: We think tooth decay is an undocumented symptom of MCTD due to Sjorens.) Also, my Raynauds is kicking in more, fingers are numb, not much fun playing guitar. Otherwise, doing okay.


--Cat

Hey there Marilyn, today is supposed to hit 16 in my area of MB but that remains to be seen...LOL...it is da prairies over here so anything is possible...what little snow we had a couple weeks ago has evaporated and with the warmer weather today it is almost like Indian Summer here...YIPPEE YAHOOOOOO....I will be out raking up a ton of leaves and maybe will light the backyard fire pit and burn some twigs and branches....I dont have any help so it will be tough going fer sure...
Good luck on your upcoming appointment...good idea taking a list of questions with you...I recommend taking a recording device too...cause in my experience I can not remember everything that the docs say by the time I get home....they always mutter a ton of medical crap that I have to try to remember and also spend time researching online...so if you cant record it then make notes...You have been on Plaquenil for 3 years with no improvement so YA definately ask about something else for meds!! There has to be some RX that will be more helpful...my last flare they shot me with medrol & RX'd prednisone on top of the Plaquenil...not sure if the Plaquenil is enough some days but I've only been on it for a few months...I sure do hope that something will work for you!!!

Hey Cat, you are right about the tooth decay being part of Sjogren's because of the drying out of the mouth it then causes bacteria to multiply at an alarming speed...I have to use mouth moisture spray for that issue as well as artificial tears...the mouth spray has not prevented any further erosion though...I still have teeth & gum issues but try to go for routine deep cleanings every six months...I also use sea salt water rinse every day sometimes 2X/day cause it helps to kill bacteria....I dont like using mouthwash because of the alcohol content & the fact that it is more drying to the mouth....H2Ocean is a good product instead of mouthwash....Good luck on your dental proceedure....ugh the dreaded root canal...yuk...I'd rather have them yank out the offending tooth as opposed to having another friggen root canal...less of a hassle and less $$$...however, that does leave another missing tooth that needs to be added to my existing partial...LOL... :)

The rain has stopped for now. Getting cold in the morning, but beautiful in the afternoon. A lot of the trees have lost leaves now. Lots of raking to do! We have a workday at church for the gardens tomorrow. I am a SUPERVISOR!
I have the colonoscopy and esophogoscopy on Tuesday. Soooo looking forward to it! But I am off the celebrex due to that and am hurting all over. Not much sleep either due to the pain. A little Tylenol helps some. But, the moon has been full the last few nights and I have been up to enjoy it! (wish I was sleeping)
As you know, I wasnt too impressed with the Pulmonary function test. I have a nurse friend that does them and she looked at my test and said it was not done correctly. Said she would do it over for me. She thinks that the part of the test that would show the difficulty was cut off. I hope it can be done in a couple of weeks, before I see the Dr again.
Got some medication from MEDCO (mail order pharmacy) in the mail. My Gyno had ordered a refill on Boniva for me after my yearly exam. Well, it was for IV Boniva! Cost $86 (my copay). I knew there was a mistake, called the DR and the receptionist said, "You just call Medco and straighten them out. They made a BIG mistake" So, I called and they read the order from the DR to me. Seems the DR made the mistake. She has a digital pad she orderes from and hit the wrong thing in a list of drugs! So Medco wouldnt take it back. I called the DR office and was told it was a simple mistake and too bad! Not worth it to sue. Guess I am out the money. Sheesh! I sure will tell the DR about it when the bill from her office comes!
Marilyn- Sure hope you get some help. You have sure had enough. The Plaquenil helped me. They cut the dose and I feel it. I wish I could take more! I dont know how you stand all that cold weather! The south is great in the winter, but the heat is a problem in the summer. Enjoy the trip if you can. Bet your dogs will!
Matt- Probate sure is slow! And a lot of work. Since I moved from my parents and in laws state, others have taken the brunt of it, and I really appreciate all they did. I did a lot of cleaning out at deceased relatives homes, but had help. I hope it isnt too hard on you. P.S. I hate root canals, but know no one that loves them!
Brandon- I use Crest or Biotene. No alcohol or burn! The Biotene really cut the plaque but is expensive. There is also a toothpaste.
Have a good week.
Mary Ann

Morning Guys
you can tell winter is setting in - Raynauds is kicking in all round. Dallas what a long way to see your Rumy, definately make a list of question and symptoms. Your mind goes blank the minute you are sat in front of any doctor.
You allsound so up beat dispite all the symptoms. This gives me hope and faith in myself.
Life this end is ................ mixed my daughter moved out yesturday mlve to the outskirts of London. which means Hubby and I have the place to ourselves again. Which is nice, we can run arround nakes screaming and shouting if we could and if we wanted to - LOL.
I am having tests for a virginal problem/ infection I have had three lots of antibotic in approx 4 months. They are saying STD which is funny as Sex is something I am not keen on and have not been since the tiredness set in over a yr ago, and my hubby as never been keen on it.

I had an interview the other day about going on the management programm and they are worried about the tiredness. So I have to do 2 weeks on the shop floor running a section to prove I can run arround and cope with a normal day. - Pain killers and no social life will ensue. We have a christmas comp next week so it wont be for at least 2-3 weeks. Duty Manager today which involves running arround and being on the shop floor all day. People are strange.
Cat I have still not cleared all my Dads stuff, I did sell a few scrappy bits of broken gold the other day, but I still have a shed full and it been 2 and half yrs.

This teeth thing in interesting as I cant cleen my teath because the foam action tend to make me want to be sick I use bicarb some times and nouth was, but mainly clean them with a peice of cloth and rub them. Must find a better way by the sounds of it.

Cat are you still swimming I have not been for weeks too tired and a visit from Mother Nature with her gift.

Wow I have written an essay again. Well I will sign off with Hugs for everyone best wishes for all Doctors visits, and my the leaves fall quick so the raking ends soon - cos yes we too are doing it.

Bye all best wishes and hope for a better month for us all

Tiggy

Hi everyone, marilyn good luck with your hospital visit. I will be thinking about you, and hoping they will sort you out with better treatment. I can#t imagine plaquinel would be enough for this illness unless the symptoms were mild. I hope all goes well and it was worth the long journey. its great you have company.
The past few days have been a bit strange for me. A mixture of mctd, pmt and nicotine withdrawal....an interestesting mixture. I have been staying away from people that i feel might make me explode lol
The sun is shining here today, but it is cold. i went to a shopping mall the other day, and it was so busy with christmas shoppers already....the nighmare season has begun. I will try and do most of my gift shopping online this year..
My life isnt very exciting at the minute...just getting through the days. I got my clay out the other day to try and make something....within minutes i felt i didnt have the energy or enthusiasm and put it away again....this depressed me. I thought moving to the countryside would help with my creativity....it seems to have had the opposite effect. When i lived in town i was like an artist possessed and would stay up all night sometimes, because i couldnt leave it alone. I also sold alot of my work. I dont understand whats happened really. Maybe its because ive had a lot of stress and illness these past few years.
cat, i hope your well. Good luck with everything. Better so and get dressed and cease the day.
Love and hugs to everyone...hope you all have a stress free pain free day x

Really enjoying this thread... just a few brief notes... Brandon, root canal cannot be as bad as my last extraction, which was terrible dry socket, front tooth upper cannot be as bad as lower, I will never get another tooth extracted after my last experience with it.

Tiggy, hope that infection clears up... sometimes it's something stupid that comes and goes. My own sex drive is very erratic, but after much contemplation, I am against giving up this particular contact sport completely! Also, my advice is always to avoid disclosing any illness to an employer. If you disclosed already, and anyone bugs you about it, just kind of brush it aside, tell them it's just some weird form of arthritis or something.

MT, I admire you for getting those tests done. I haven't been to the doctor in ages, I am long overdue. I will try to follow your example... let us know how it goes.

Jacqui, I know what you mean... I started a song a few days ago, and then just lost interest in it... part of it was energy level, part of it was that I was just too uncomfortable to find a good position for sitting down and recording more tracks. But then, I suddenly got a burst of energy and wrote a bass part. The lyrics, however, are junk and must be completely reworked... of course, I don't have to finish anything and can come back to it later, which is harder to do with the potters wheel!

Gotta run, great to hear from everyone,

--Cat

Had the esophagoscopy and colonoscopy today. what fun! As usual, the prep was brutal. And on top of it, I have an infected cyst on my rear! Along with diaper rash. I dont think sex will be on my or my husbands mind for awhile!
So, the esophagus and stomach were OK! I was suprised. But had 2 polyps And they were removed for biopsy. Probably OK too. Glad that is done! Am still nauseated.
Have to continue to stay off the Celebrex for 10 more days. No lifting or exercising.
Had an interesting revelation though. The Dr asked me how long I had been on Medrol. About 4 years. That is 10 pounds a year in weight gain! It is easy to gain 1 pound a month! At least it is for me! Cause I did it!
It is rain, rain, rain again. Something to do with a hurricaine or tropical storm or whatever! Guess it will water the church garden! That went well. I supervised and did light digging with a trowel. Looks good! They are trying to get me to take the gardens, but I am refusing. It is one thing to help and another to be in charge. The woman that did it said she is dropping out completely. She is worn out. Was up there at least once to twice a week during the summer.
Big project in my bathroom! My husband is removing all the grout around the tile in the tub and replacing it. The tile got loosened by the house repir last summer, so some is being reglued too. Took down wallpaper and getting a new floor now that all the black mold is gone.
My daughter got a pet hedgehog. Anyone ever had one of those? Cute, but not too cuddly.
Have a good one.
Mary Ann

Well went to Rhuemy appointment. She was one and a half hour late and gave me a begrudgingly 7 minutes of her time. She also wants me off all meds. Everything not just the mscontin and then see a pain specialist. She gave me five days worth of 15 mg of prednisone each day and expects me to call Friday and report all the pain is gone! Really!!! I was not at all impressed! I was pretty upset but already started to discontinue the the chlonazapam as it is hardest to get off of. I will be seeing my(actually a new one as my worker is seriously ill) psychologist and be making contact with my psychiatrist who actually comes here once in awhile. I would rather work with them than pain specialist for the serious depression issues and anxiety issues I know I will have when or if I have to come off them.) Rhuemy wants me off them too) Think shes trying to do me in. lol. She is also a non believer regarding fibromyalgia which is very debilitating painful disease I have suffered with for many years. It is real!!!! I may not be in a good mood for awhile. I do not know if I can go back to this Rhuemy. LOL. I feel like screaming!!!! lol hugs marilyn

Gosh Marilyn!
What frustration! I am so sorry you went so far for so little! What is her rationalle for no meds at all? Yes, please talk to your Psychiatrist/psychologist. Going off your antidepressants cold turkey could be dangerous.
The steriods may help, but the weight gain is a big issue with me. I missed my steroids on Tuesday due to the tests. I took a dose when I got home and it came out with my breakfast. By evening, a couple of my joints were swelling and sore. I take 2mg of Medrol on Tues. It really helps, even in a small dose. I hope you do get relief. But sounds like a long haul for you.
Mary Ann