First appt. with infectious disease/immunologist

Discussion in 'Fibromyalgia Main Forum' started by lisjhn, Nov 29, 2002.

  1. lisjhn

    lisjhn New Member

    I need advice please!! I have my first appt. with an infectious disease specialist in a week and a half and am hoping it doesn't go as bad as it did with my Rheumy. He is also the only one in town so I don't want to mess this up. It's just really hard to express all your pain, all your symptoms and the frustration you've been going through for years in a 15 min. appt. so I want to make the most of it.

    I pray he will do the tests I've been wanting (like HHV-6, HHV-4, CMV, etc..) but need to know how to present myself. (I've had many people tell me that perhaps the doctors get a little intimidated because you know more than they do, so to back off a bit and let them do their job.) My problem is I don't feel they are doing their job and I'm so TIRED of reaching out, begging for help and then being told to exercise and take a tylenol and to learn to live with it. I've learned more on my own just researching all the info I can, then through any other medical "professional" and I really think I have a viral thing going on in my system. I also have had Hep C for about 10 years now, but I feel it's the CFS that's practically killing me here.

    So, any advice on someone who's been to an immunologist/infectious disease specialist before? What do they do? What tests? What tests should I maybe ask for? I'm so scared, because I really feel this is my last shot here. I can't do this much longer and feel I'm going to go in a huge depression soon, especially if things don't go well with this appt.

    Any replies will be helpful. Thanks, ~LISA
  2. lisjhn

    lisjhn New Member

    I need advice please!! I have my first appt. with an infectious disease specialist in a week and a half and am hoping it doesn't go as bad as it did with my Rheumy. He is also the only one in town so I don't want to mess this up. It's just really hard to express all your pain, all your symptoms and the frustration you've been going through for years in a 15 min. appt. so I want to make the most of it.

    I pray he will do the tests I've been wanting (like HHV-6, HHV-4, CMV, etc..) but need to know how to present myself. (I've had many people tell me that perhaps the doctors get a little intimidated because you know more than they do, so to back off a bit and let them do their job.) My problem is I don't feel they are doing their job and I'm so TIRED of reaching out, begging for help and then being told to exercise and take a tylenol and to learn to live with it. I've learned more on my own just researching all the info I can, then through any other medical "professional" and I really think I have a viral thing going on in my system. I also have had Hep C for about 10 years now, but I feel it's the CFS that's practically killing me here.

    So, any advice on someone who's been to an immunologist/infectious disease specialist before? What do they do? What tests? What tests should I maybe ask for? I'm so scared, because I really feel this is my last shot here. I can't do this much longer and feel I'm going to go in a huge depression soon, especially if things don't go well with this appt.

    Any replies will be helpful. Thanks, ~LISA
  3. teach6

    teach6 New Member

    When I was trying to get a dx I began keeping a list of my symptoms on my computer. In part I did it for my STD claim, but by the time I finally saw my treating doc it had been over two months and my list was quite long. Luckily for me he schedules long appointments for the first visit.

    I still take a list when I see him, now almost a year later. Usually I begin writing things down about a week beforehand and then go back and add or delete what seems appropriate. This helps me remember all the things I really want to say. It also helps me keep my list to a reasonable length that can be covered in one visit.

    Good luck to you at your specialist. I ended up being treated by an internist who has specialized in CFS and FM.

    Barbara
  4. lisjhn

    lisjhn New Member

    Thanks for the input. I'm just at the end of my rope here. The rest of it will be used to hang myself if things don't go well at this appointment!

    I'm also an emotional mess right now and have cried for a week straight. My hormones are screwy since I went off depo three months ago and switched straight to a low dose birth control thinking it would ease any side effects. Well, I do not recommend depo for anyone thinking about it, because I've had the worst experiences trying to "come off" it with the cramping, headaches and the emotional psychotic-ness, if that's a word.

    Plus I stopped my 10mg. dose of Elavil recently because it wasn't doing anything anymore and I didn't want to up it again because my weight has been "upped" enough. It did help me to finally sleep, but after awhile the negative side effects completely took over. Time to try something else. I wonder if stopping from 10mg. just like that can cause some depression, aches, headaches.....??? Naw..,,seems too low.

    I am seriously getting depressed too. First time I can actually say that. Funny because through everything I've been through from these DD's and especially having had the worst year of my life and all the unlucky things that have come my way........I can honestly say I've not had any depression along with it. Definitely had days I felt really down but I've always managed to hold my head up and KNOW that someday soon things will be better. "Tomorrow will be a better day".... I kept repeating over and over and over. But it's not. I'm getting worse and I'm exhausted and I'm not gonna kid myself anymore.

    I will probably be bawling throughout the whole appointment with the specialist anyway, so either he won't be able to hear a word that comes out of my mouth or he'll really believe how miserable I am. My pain has become unbearable these days and I need to ask my doc for stronger pain meds too which will be a hassle in itself right there. Just completely overwhelmed right now.

    Anyway, I'm just rambling, because I feel so hopeless and I know you guys will listen and can relate. Maybe I'll try the Sam-E again for now before the doc gives me a stronger anti-depressant. Just praying that the immunologist will find something and can help, otherwise, I'll have to commit myself to the psych ward the way I'm feeling now.

    Thanks for listening. Also, my grandma is dying soon. She's in end-stage renal failure. Can't visit her in the nursing home right now because of an outbreak of chicken pox until my immune system gets better. But I will, so my stress and anxiety level has sky-rocketed to boot.

    Didn't mean to turn this into a diary....sorry. and thanks for listening.

    Tomorrow will be a better day................~LISA
  5. Dara

    Dara New Member

    you will probably do just fine at your doctor's appointment, hopefully you have found someone who will listen and who is compassionate. My daughter was on the depo for birth control for awhile, when she went off of them she was a "total wreck". Very depressed, no energy, migraine headaches, it was really bad. I think that lasted for a month or so and then everything went back to normal for her. Since you are going to an immunologist, I am wondering, have you buy any chance ever been exposed to mold? I have been and was then diagnosed as having allergies to molds. It was suggested to me to go to an immunuologist but I haven't done it yet, don't know what they would do that my primary can't do.

    Anyway, good luck to you and hope you have a good report for us on how well it all went for you.

    Dara
  6. lisjhn

    lisjhn New Member

    OK, I've decided to bring notes of my symptoms and how frequent and severe they are, also the meds, supplements and other treatments that have worked and those that have not. (The latter being the longer of the two lists.) And I'll just keep it in my pocket till I feel it's appropriate to bring it out. I'm just scared to bring notes with me anymore to doctors visits ever since one doctor actually threw mine back at me and said she doesn't read notes, and another one, the only reason she has a complete list of my symptoms is because I mailed it to her in a letter!

    I can tell I'll be crying through the whole appointment already, so hopefully he'll believe how sick I am and run lots of these more extensive tests that no one else will. Including some allergy tests too, I've never had that done either.

    Anxious to see what my immune counts are too (like CD4, CD8, CD56+, NK cells...) since that subject has been brought up a lot. You know, those headliners that just came out about CFS and AIDS patients having the same suppressed immune system. The way I feel I can believe it.

    I know there's an answer out there somewhere and someday we'll see the big picture and realize why we were cursed with this DD. (See that's how I used to talk, that's more like it.)

    Thanks guys.....~~~~~~~LISA~~~~~~~
  7. moewee

    moewee New Member

    I have some other ideas just waiting to see if you have gone yet? When is your appt?

    Moewee
  8. Claypot

    Claypot New Member

    Hi Lisa... I wanted to say that when u go in to see the dr perhaps maybe start out by saying you are looking for a dr that is willing to listen and to believe you when u say ur not doing to so well. And than ask Him right out if its possible he would fit the bill. Well u dont need to use these exact words .. but I hope u get my meaning lol I cant even think right now how to phrase this!! LoL Anyways.. Try always to make ur initial visits with new drs.. even before your out of any meds and than just call and make the appointment tell them its for a consultation.. that way you can feel them out and it allows u to just talk* or at least open the communication door. Plus You should be able to learn right there if the dr will... believe u and be sympathetic to ur needs. Also I dont know but if ur married try bringing ur spouce with Drs seem to actually believe u when ur spouce is right there verifying whats going on. And if no spouce perhaps a sister or friend??? I dont know theres alot of good reasons to have someone tag along,... I seem many times to just forget what the docs say by the time I get out that door LOL! Anyways Ive gave my advice and I truely will be lifting u up in prayer.. And want you to know I care about You and Will be praying for a supernatural Peace to Fill You right now and that would sustain You all the way through Your appointment! Love : Claypot
  9. lisjhn

    lisjhn New Member

    My appointment is December 10th. I know, I couldn't believe it either, only a 2 week wait from the day I got the appointment!

    The reason I was asking for advice is because it's not really an interview type thing, where if I don't like him, I can try someone else. I'm on DSHS State disability and Basic Health, and this is the appt. they gave me, so I can't really shop around. Plus he's the only one in town.

    But I think I will bring someone to the appointment with me this time. I think it will work better and I can get more to the point. They see you drive there and assume you're A-OK.

    Wish me luck!

    ~LISA
  10. Dara

    Dara New Member

    did your appointment on the 10th go? Hope you found a better doctor this time. Personally, I think if a doctor gets offended by you taking in a list of concerns and questions and complaints, then I'd walk out the door. He/She wouldn't be the type of doc who should even think about treating FM patients.

    Dara