doubting your dx even though you have been dx!

[billiejeane]

Do you guys do this to yourselfs? ive been to 2 ms specialists,got the dx,it's so black and white,yet I dont believe it? I wonder things like "am i really heat sensitive or do i think i am cause i have been told that is a sx?" "does my left leg realllllllllly feel weird or am i over analyzing it and its my imagination?" Its almost like i am not "worthy" of having a real dx?!?!?how messed up is that? my neuro has assured me,but still,i battle with believeing it???????????????? is this just a simple case of denial?????

[Justsayyes]

I think this is pretty normal for many people. I am still in denial to a certain extent after several years. That's just me, and this may be just you too. I don't really know how to advise you. It is a part of dealing with a traumatic event, which diagnosis is......

It will get better, all things do change with time. Think of the grieving process which includes denial, anger, etc. Sorry I forget all the phases! (((Hugs to you)))))

[BigA]

I think there are hints of reality in what you say.

First - your doctor may not tell you this, but not everyone is heat sensitive. You don't have to be. In fact, you don't have to have any symtom.

Second - When I was worried, my symtoms seemed to grow, and when I took a xanax, my physical symtoms got better. What does that tell you?

No, you don't have DX of heat sensitivity and disability. Only time will tell what will happen to you.

[billiejeane]

I think there are hints of reality in what you say.

First - your doctor may not tell you this, but not everyone is heat sensitive. You don't have to be. In fact, you don't have to have any symtom.

Second - When I was worried, my symtoms seemed to grow, and when I took a xanax, my physical symtoms got better. What does that tell you?

No, you don't have DX of heat sensitivity and disability. Only time will tell what will happen to you.

I know right? I really was not heat sensitive at time of dx? my mother died 2months later,suddenly,still felt so so. Than whamo,6months later,sx's of ms. I hadnt een accepted dx let alone my mothers death. So I guess what I am saying is,it truly feels i am heat sensitie,but wasn't until 6months after my mothers awful death. So,is it the grief of mother,grief of ms,or what???!?!?! let me add i am a homecare nurse,i see 6pts. a day in florida,and went back to work right after my mothers passing and haen't stopped since. I need to decompress to get it together? see,i still dont know what i think. and i totally agree with you,would love to take a xanny,but makes me 2 tired during day,i wait for night time. im so over myself.

[billiejeane]

I think there are hints of reality in what you say.

First - your doctor may not tell you this, but not everyone is heat sensitive. You don't have to be. In fact, you don't have to have any symtom.

Second - When I was worried, my symtoms seemed to grow, and when I took a xanax, my physical symtoms got better. What does that tell you?

No, you don't have DX of heat sensitivity and disability. Only time will tell what will happen to you.

hey i just read your profile. You are sooooo right,and i used to be like that! can u im or whatever all that is? i would like to talk to u. im not a stalker,im female that is engaged.

[Sequoia]

hey i just read your profile. You are sooooo right,and i used to be like that! can u im or whatever all that is? i would like to talk to u. im not a stalker,im female that is engaged.

There is no message option on MSWorld. If BigA has his email address listed in his Profile, you can contact him that way if you wish.

[bammaw]

Do you guys do this to yourselfs? ive been to 2 ms specialists,got the dx,it's so black and white,yet I dont believe it? I wonder things like "am i really heat sensitive or do i think i am cause i have been told that is a sx?" "does my left leg realllllllllly feel weird or am i over analyzing it and its my imagination?" Its almost like i am not "worthy" of having a real dx?!?!?how messed up is that? my neuro has assured me,but still,i battle with believeing it???????????????? is this just a simple case of denial?????

Been there done that (and still do) much to my daughter's irritation. She'll say "what part of spots on the MRI's, O-bands in the CNF (spinal tap,), postivie Evoked Potentials, symptoms"don't I get...hee hee. I do very well over all and since my formal dx in 2003 I have seen only slight progression of symptoms (mostly sensory but some balance issues) though I joke that at 61 (on 9-11!) maybe it's just the aging process. Having a milder form of MS makes it easy to "deny" that I actually have it...until weird stuff happens.

All joking aside, I have accepted the fact that I have MS but it does not define me. I live my life, enjoying pretty darn good health (still working on good eating and exercise) and moving forward. There are so many others who have it so much worse, very impacted by the disease, that I cannot help but thank the Good Lord that mine is a mild form (unlike my cousin who died of complications back in the early '80s).

Wishing you good health and easy going on the MS road of life God bless you.

[BigA]

There is no message option on MSWorld. If BigA has his email address listed in his Profile, you can contact him that way if you wish.

Private messaging would be nice. Julie, not a stalker, lol. I have an anonymous email address in my profile that I made just for communicating with people here. I'd love to hear from you. We're all a small community.

[lemstar]

Yeah, I have been diagosed for two years, and have a history that indicates I have had MS for 31 years, and at my last visit with my MS specialist, due to arthritis in my neck, as well as bulging discs, I tried to get him to consider that maybe I don't have MS. He smiled and pointed to my MRI films, and the black holes....

He wouldn't go for it....oh well....

[dave1963]

I was the same way before i started dmd last nov , then i still had days i doughted it The best thing I can tell you is
that the more time I spend here on the boards reading everyones diff. stories & questions has helped me more than i can explan !
Hang in there & good luck!

[GIGI69]

My Problem is With The Meds

I get to thinking I feel ok. I dont' need the neuotin or zanaflex. Then, everything returns. I just wish I could get off these blasted drugs with out excruciating pain returning. Sigh

[gomer]

My situation was far different than most, for me it connected about 50 years of unconnected dots.

A new eye doc in 2009 opened the MS can of worms and within months the formal Dx was established. MY fam doc was pushing for me to get the MS question answered. It took 4 neuros, clinics that either did not want to bother with an old timer etc. (too old for drug trials). I had been having increased walking problems, a couple shoulder surgeries etc. So I was more determined than ever to get the MS (or whatever) question answered.

I had to give up playing baseball about age 12, I could not keep up with other kids, never could play sports in HS and was not allowed to march in Navy boot camp. IN the 80s I had a very rough time and instead of listening to me, they sent me to the shrinks instead, who proclaimed I was not nuts or even depressed. After that I had given up seeking answers for decades.

IT was a bitter sweet aaaaaaclimax when the same VA that at long last ran the testing for MS and gave me a formal RRMS dX SAYING IT WAS A LONG STANDING CASE OF ms.

Gomer (acronym = Get Out! My Exam Room)

[billiejeane]

Private messaging would be nice. Julie, not a stalker, lol. I have an anonymous email address in my profile that I made just for communicating with people here. I'd love to hear from you. We're all a small community.

How do I i email you? hey,i also stopped my copaxone about 2weeks ago. My neurologist whom I adore,would be upset,and she is not one that is out for the pharm company kick-backs. I am a mess biga. And hurray! I have been up since 3am,couldn't sleep,and have to be a nurse alllllll day! Hurrayyyyyyyyyyyyyyyyyyyy. NOT!

[Lexie]

I think we all doubt ourselves at times. I certainly do. Even if I am feeling bad and go out with friends, I seem to forget how bad I felt before leaving the house. It's hard to understand myself. Yes I was in bed with this fatigue an hour before and now I am laughing and joking. Yet the next day I am so tired I can hardly get out of the bed. I hate this always questioning myself! Seems as if it is something I have to do I don't question it! Like going to work every day unless I just absolutely can't get up. This is a very strange and difficult disease.

[billiejeane]

Private messaging would be nice. Julie, not a stalker, lol. I have an anonymous email address in my profile that I made just for communicating with people here. I'd love to hear from you. We're all a small community.

hey,i do not understand how to email you from a message board? I saw your email address but I spend sooooooooooo little time on the computer and this is my first time ever being on a message board. help?