Question to Redwillow from Fudge

Discussion in 'Fibromyalgia Main Forum' started by Fudge43, Nov 2, 2006.

  1. Fudge43

    Fudge43 New Member

    Hi Marion .. I saw my GP yesterday and she is going to refer me to your rheumatologist ..she was a bit hesitant because some other patients had not been happy with what went on while they were looking for a diagnoses ..
    I have had an established diagnoses for over 4 years though.

    What I am looking for are answers (if possible) to questions .. i.e. why the weather affects me so intensely ? are there options to look at to help this .. what influence does the hypthyroidisim have on this or vice versa .. I have excellent pain controll meds from my GP so I am not looking for that ..
    I would just like to know about some questions.

    Can you tell me about your experience with her ? .. dos and don'ts ?
    I would really appreciate it !
    Joy : )
    PS .. I always find going to a new doctor so STRESSFUL !
  2. Redwillow

    Redwillow New Member

    Hi Fudge

    I am trying to remember why it was that you wanted to see my Rheumy. Sorry terrible memory.....

    I found Dr. Joneja very easy to talk to about FM. When I took her my list of symptoms she nodded her head and said yes I have seen all these before or something like that.

    As for figuring out why we are affected by the weather. I have never asked. I am not sure if she can help you with that.

    I already had my diagnosis by another Rheumy when I went to her. She just confirmed it for my GP who is a non-believer. Also the first Rheumy I saw wasn't accepting any new patients after almost a year of waiting to see her.

    I keep questioning Dr. Joneja and other doctors about whether I have any thyroid issues but all my tests come back normal. Believe me they have done them..... It is very frustrating because I have gained a lot of weight.

    I took some information from the internet with me to Dr. Joneja about the influence of the thyroid and FM and that the numbers don't always mean anything. She read them and said she had never heard any of that before.

    I asked Dr. Joneja if she could send me to a thyroid doctor with an open mind. She sent me to Dr. Katherine Kovacs also in Kingston. She seemed extremely nice but again she didn't think I had a thyroid problem. She did more blood tests and said that if everything came out normal she wouldn't need to see me again.

    Since you have already got your thyroid issue addressed I am not sure what new information you will find.

    Why was your GP hesitant to send you to Dr. Joneja? Does he not like her?

    As for visiting new doctors I am always a mess. I get very stressed out and can't sleep before hand. By the time I get to the doctor I am a complete mess so at least they get to see me at my worst! LOL

    If I didn't get your questions right please ask me again.

    hug Redwillow
  3. Fudge43

    Fudge43 New Member

    Hi again Marion !
    It wasn't that my GP (young woman herself) didn't like this doctor .. it was that she had sent a few patients who had fibro symptoms to your doctor but they came back without a confirmed diagnoses or satisfaction that they did not have fibro either .. sort of in limbo and not happy ? .. but she was not totally negative to me seeing her .. I think she will be interested to hear what happens too ..
    What I'm looking for is some answers to my slipping backwards or getting worse than I was a couple of years ago .. even just from last year .. I'm very proactive about trying to do everything I can for myself .. so I feel frustrated about this happening ..
    I know she may not have any answers for me .. but I'm willing to try investigating new resources if they can possibly help.

    I had to chuckle (not at your benefit)about you seeing Kovacs ... I saw her a few years ago and it was an experience .. she thought I had more wrong with me as well ..beyond the hypothyroid problem .. adrenal fatigue .. my cortisol levels were quite low .. I had to spend a few hours being tested for insulin tolerance in a hospital room .. was not a great experience for a lot of reasons .. I didn't go back because there was a problem between her and my former rheumatologist .. he had been a mentor of hers while she was in training .. he told her in so many words not to complicate my case by experimenting on me looking for Addison's .. you wouldn't believe it Marion .. my GP was flabbergasted by it all ..

    In any case .. I finished seeing the two of them !

    I understand your frustration with the possible thyroid issues .. it can really screw you up badly .. I'm fairly stable right now with my Synthroid dose, but have regular blood tests to see if I'm slipping one way or another .. also the weight issue with me is a pain !

    Keep pushing for answers .. perhaps your GP will listen eventually about this issue.
    Again .. thank you for answering .. i really appreciate it !
    Good luck !
    Joy : )
  4. Redwillow

    Redwillow New Member

    I wish I could be more help with you. I also wish we could compare notes on blood work etc.

    I went to one appointment in Scarborough, there is a doctor there called Allison Bested. She is supposed to be one of the leading FM/CFS doctors in the Toronto area. My cousin goes to her and really likes her and set me up to see her.

    My problem is that driving to Scarborough is a 2 hour drive for me and even more stressful than even driving to Kingston.

    I found out that to see Dr. Bested she wants you to see a naturopath that she is associated with first for several visits before you see Dr. Bested. The naturopath appointments and suppliments are all things I have to pay for out of my own pocket. Very expensive.

    The naturopath said that she wanted to put me on natural thyroid meds (pig thyroid) from my blood work that I showed her from about 4-5 years and also B12 pills.

    I took both of these suppliments for 3 months and didn't see any change in my condition.

    Also she had a dingbat of a receptionist who would never answer the phone. She would maybe get around to answering your message several days later. When you did go to the office she was pushy and rude!

    It always seemed like she would call when I was out and leave a message on my answering machine and we would just play phoned tag.

    Since I wouldn't drive myself to Scarborough I had to rely on my husband to take a day off work and that wasn't always easy especially with a person you could never get on the telephone.

    So after going one time and playing phone tag for 3 months to set up another appointment I gave up, and quit taking the suppliments that she suggested Waste of money because I might have just needed to increase the dosages and I never even got to see Dr. Bested.

    My cousin is upset with me not continuing to follow up with this Doctor and I wish I could but I don't have the money and my husband just can't take the time off work. If he doesn't work he doesn't get paid, because he works on commission!

    So I am very interested in the thyroid thing. I have gained about 60 pounds with my slower lifestyle, the amitriptyline that I take to help me sleep and the fact that when I get depressed and lonely I EAT!

    Dr. Kovacs said that so many of us with FM/CFS seem to think there is a thyroid connection but she didn't think it was true. Obviously some people like yourself definitely have a thyroid condition. She did test me for everything I think. I have never seen the results of the blood tests but I think she did all the thyroid tests and adrenal too.

    I was hoping to get a copy of the blood work from Dr. Joneja when I went for my year check up in Sept. but she had the nerve to get pregnant (lol) and cancelled. Now my appointment isn't until Dec. 11th. I definitely not as thrilled about driving there in winter weather.

    Right now it is snowing outside! Yuk, I used to love the snow but now I have become even a bigger hermit in the winter time. I can handle driving in snow but ice really scares me. I just tend to stay home a lot.

    Is there any chance that you would like to chat sometime in digi chat, and maybe even exchange email addresses? If this makes you uncomfortable I understand.

    hugs Marion (Redwillow)
  5. Fudge43

    Fudge43 New Member

    Hi again Marion .. I'm sorry I'm slow getting back to you .. yesterday was clean up the house day, my husband helps out a lot .. but I get so darn tired and pain starts getting to me .. that time of the month trying to do it's thing too ... YIKES !

    Wow .. I so know what you mean about the driving .. I hate it .. but I manage getting around Kingston on my own if I have to .. but a 2 hour drive would finish me .. yet, if you saw me you wouldn't think there is anything wrong with me (except if you saw me on a bad day .. no makeup .. bad-hair day, in my PJs .. it even scares me ! haha ) ..

    What I wanted to say was that you should never have been put through all that garbage with "passing" the naturopath "test" first .. how can that possibly help with those circumstances ? .. now that is FRUSTRATING !

    Yes .. the expense of the supplements .. CoQ10 in higher doses is costly .. but the B complex isn't too bad .. and I take extra time released C ..
    It would be great to be able to compare notes about what we have tried .. what works and doesn't work !
    So yes ! .. it would be really helpful I think to exchange e-mail and see what we are both doing and going through so I am happy to do that !

    What is funny was our doctor maternity leave .. I (we.. my husband sees her too ) she went on maternity leave last Fall/winter and came back in this September .. it was hard for us both of us .. but especially me with the pain meds issue ..some of the sub doctors tried to switch me around .. long story .. but I understand how you felt with your doctor, since we went through the same thing ..
    The NERVE of them having more kids ! haha

    I'm thinking of getting out today to do a few things .. if I can manage it .. my hubby is at a hockey tournament all day .. he referees in the Kingston Leftovers league .. but helps with some coaching for these events ..

    So leave me a note for when you think we can get the e-mail mission accomplished .. and we'll get hooked up !

    Thanks again for all of the info Marion .. it helps !
    Joy : )
  6. Redwillow

    Redwillow New Member

    Hi Joy

    Thanks for the reply. Clean up the house day! YIKES! I hope you didn't try to do it all in one day! Especially when it is that time of the month!

    Speaking of bad hair days. Someone dropped by for a visit yesterday. I had to get out of the bathtub just before because the phone rang so I had jumped back into wrinkled PJ's and had wet hair.

    Of course that would be when this distant friend decided to drop by. She is one of those women who has lots of money to spend on herself and ALWAYS looks fabulous! I try not to let it get to me but...

    As for the specialist and the naturopath, I was told that the specialist believes in a 3 part plan. Cognitive therapy (which I had already done), naturopaths and finally her treatments. So I was prewarned.

    I should never had gone in the first place but my husband said he would take me to my appointments and then had to back off because of work issues! I was so disappointed and the pain in the butt receptionist was the final straw!

    It sounds like we have hockey in common too. My husband, son and daughter all play hockey and coach. I am the hockey Mom and for years the taxi driver. I never used to miss a game but am finding the cold arenas too hard on me anymore so I don't go very often.

    I am missing a hockey game tonight actually. My son is playing and my hubby just left. We did a lot of work outside today. Hubby was cutting firewood (we heat almost completely with wood) and I was helping load the trailer.

    Of course I did way too much and I am hurting really badly right now. Problem is that I love to be outside and I hate it when my husband has to do all the work by himself.

    I refuse to let him run the chain saw without someone there in case he gets hurt. He is always telling me to just keep him company but I have a hard time doing that.

    Meeting in digi chat sounds great to me. I am home alone during the week and often on the computer in the afternoons. Would that be good for you?

    Suggest a time and I will be there! :)

    hugs Marion

    [This Message was Edited on 11/04/2006]
  7. Fudge43

    Fudge43 New Member

    Hi there Marion ... wow ! .. I so know what you mean about wanting to make sure you are there when your husband is using the chain saw .. you just never know what might happen by accident ! ..

    We have a gas fireplace in the family room .. we love it almost as much as our cats ! haha .. heating and cooling the house can be expensive .. we had electric baseboards only when we first moved here .. then we slowly began to add different options .. I so hate the heat and humidity of Kingston in the summer .. and I am a fanatical garden nut (slowing with age .. aches and pains ! haha).. added ductless AC and that helped a lot.

    Do you find we are so sensitive to our environment it is scary ? ... geez .. I sent this by mistake already .. this morning is going to be a DOOZY ! haha

    Yes .. hubby loves hockey but only referees now .. too many injuries and by twilight zone odds he still gets injured .. a couple of weeks ago he was nailed by a missle puck .. smacked him on the head and down he went on the ice .. out cold .. ambulance->to emergency ! .. it was late at night since his league plays the late times .. another concussion to add to the list ... but is back on his skates again .. phew !
    Son isn't interested .. good thing too .. he is like is dad ! haha

    I think I am writing a novel here .. better wrap this up !
    Yes .. meeting up next week would be fine with me ..
    I'm a bit off center with this cardiologist appointment on Tuesday ( this all started a couple of years ago .. now I'm trying to work up the courage to get this done) ..

    In any case .. throw out a time and we'll try this out !
    chat later !
    Joy : )[This Message was Edited on 11/05/2006]
  8. Redwillow

    Redwillow New Member

    Good morning Joy (good morning Fudge in here so you will find this note depending on wish word you search for! lol) I figure anyone with a name like Fudge has got to me my kind of person!

    Yes I agree we are extremely sensitive to our environment. The heat and humidity just about destroy me during the summer. I drip with sweat and feel like I can't breathe, my chest gets so tight.

    We don't have air conditioning here, too much money to install central air in our big house.

    I actually deal better with the cold then the humidity.

    Please let me know how your trip to the cardiologist goes. You have probably told me why you are going but my brain is like a sieve!

    Let try and talk around 1:00 on Monday. I will meet you in the Fibro digi chat site. We can always move after that to a quiet room to share personal emails addresses.

    hugs Marion
  9. Fudge43

    Fudge43 New Member

    Hi there Marion .. I'm middle man ? for my two cats in the morning .. younger one being naughty so I have to keep an eye on her .. mostly Siamese .. so she is quick to "out think" me ... hum, just about any living creature CAN in the morning ! ! haha

    We were so happy to be able to have this method of AC .. since we don't have a "furnace" ... air ducts for a normal AC .. but this method is amazing and it saves my life literally in the summer .. I would never be able to garden without that break of relief .. I am so grateful for it every year !

    Yes .. fudge is one of my downfalls .. sigh ! haha .. love the old fashioned stuff .. sugary ? but a little creamy too ! YUM !

    Yes .. I'm a little new to the chat rooms .. but did this when Rosiebud and I exchanged e-mail .. she is a great gal in Scotland .. we shared a really sad event with us both having to put our older cats to sleep .. it really helped "talking" to her ..

    In any case .. 1 PM today .. I may fumble a bit .. but I think we can get the mission accomplished ! haha
    Chat later !
    Joy : )

  10. Redwillow

    Redwillow New Member

    Hi Joy

    Looking forward to it. I have a note beside the computer so I won't forget.

    If my husband sees it he will wonder why I have written a note "Fudge 1:00". He is aware I love chocolate but don't usually need to write myself a note! LOL

    hugs Redwillow
  11. Fudge43

    Fudge43 New Member

    Had to laugh at the "fudge" note .. I did the same thing .. we have no memory retention at all eh ? haha
    Hum .... now I'm thinking of FUDGE !!! haha
    Joy : )
  12. Redwillow

    Redwillow New Member

    Hi Joy

    Did you get my quick test note yesterday trying your email address?

    hugs Marion
  13. Fudge43

    Fudge43 New Member

    I "replied" .. hit the reply button to your message .. did it get through ? .. I'm wondering now since you are asking me if I got yours .. that mine may be in cyber limbo some where ..
    I'll send one now ..
    almost 2PM on the 8th of November
  14. Redwillow

    Redwillow New Member

    Hi Joy

    It worked! LOL

    hugs Marion