Upset...dr appointmetn today..opinions, support needed

[IUMOM2]

I know I'm still a newbie here, but I do feel at home. I feel as if everyone here "gets it". So, today I went to my Internist. I have been seeing him for several years now. At first I really felt as if he was going to be the one who helped me get to the bottom of things, now I'm not so sure.

He told me today that I have to understand that they may never be able to tell me what is wrong. I'm sorry that is unacceptable to me. For the amount of disability I have I need answers. Am I wrong for that? He went on to tell me about family members who had genetic risks for disease how hard it was for them to live with that.??? I'm sure that is the case, but do they have pain, bladder, bowel, mobility, swallowing issues, etc?

He said when I mention fatigue and pain, to him it doesn't "say MS", it sounds like fibro. He did the tender point test. One area, my chest, was a little tender, but that is it. He then went on to say that he knows a lot of patients think that the doctor thinks they are crazy when they say they have fibro, but that it is real. I know it is real, but honestly, I think I have more going on.

He then asked me if I'd ever been on any meds for anxiety. He said I seem anxious whenever he sees me. Well, yes, I am stressed in the doctors office. He said he had a feeling I was like that at other times too. He said that it would be normal to be anxious with everything I have going on. Well, yes I agree with him there.

He then prescribed Cymbalta for pain and anxiety. I'm to go back in two weeks. In some ways, I agree with what he said. But, I do feel as if there was a hint of dismissal in his talk.

Oh, I made the mistake of asking him why he thought I wasn't dx'd with MS. Since I have had two separate attacks in two different areas of the CNS. He said that the criteria meant that you had to have to areas on the MRI. He talked about how if it was MS how the meds would cause all kinds of side effects???Really?? Anymore side effects than being disabled?

What do you all think? Should I just resign myself to the fact that we may never find out what is wrong? Should I continue with this doctor? I feel as if he is heading down the road of dismissing me.

I do still have my MS specialist (I see her in June).

Thanks for any help.

PS if you're interested my time line is somewhere on here (it's long so I didn't want to post it, but reading it may give you some insight into what is going on with me).

[Want to feel well!!!]

OMG!  A type A personality AND you are selling your house!  You must be exhausted from that alone!

I can so relate to the type A personality type...

You do not look like a hypochondriac.  It really helps to vent and get it out.

((HUGS))
Wanna

[IUMOM2]

I just wanted to thank everyone again for all of your help. After mulling things over the past few days, I feel a bit better about the situation.

I see a bit more where the doctor was coming from. But, I also know more about how this illness (whatever it is) affects me and my life. I have a sneaky feeling that this doctor thinks I do nothing but dwell on my illness day in and day out. Nothing could be further from the truth.

I suppose my list of questions made it look like I was a bit of a hypochondriac, but honestly, I'm not. I do think about my health, especially when I'm having a bad flare.

But, I also have a busy life with a husband three teens (one is away at college, hence, the IU mom user name). I go to church, have a lot of friends, and have hobbies that I enjoy (although, not as much as I used to).

I am very much a typ A, overachiever. I think having this personality type makes it even harder to be in limbo.

I guess I'll stop here. We have our house for sale and we are having a showing this evening, so I have plenty to do.

Thanks again.

[IUMOM2]

How did your EEG go? I will have to search for your thread (hopefully, you made one).

Don't give up looking for answers. All of us limboer's here will help each other out.

Take care,

PS I hear you about the new body. I suppose my husband would probably like that too. LOL..sorry, I couldn't resist.

[IUMOM2]

Thank you so much for your kind and encoraging words. Yes, we have a deal! We will both fight this together.

It sure is easier having someone who is going through the same thing to help you along the way. It's sad, though, knowing you, and so many others, are going through the same thing.

Thanks again for your support.

[marez]

Can I just say I ditto what you said, well I am not quiet at the point to keep up the fight with the doctors after today but we will see.

I can really understand how you feel today I am with you it does feel better that I am not alone today so you helped me.
sorry brain dead now, and I have the eeg so have to stay up so late get up earlier  and focus on homework tonight geez I would rather have a little pity party and go to sleep and wake up with a new body!!!
hugs
Mary

[wingnut19]

I'm listening!  (reading)

I am so very proud of you!   You deserve answers!  You and I will both fight together to get the answers and/or treatment that we deserve!

Do we have a deal???

Tammy xo

[IUMOM2]

I've been thinking about all of this. I think what is bothering me the most about all of this is the loss of hope. I just cannot give up hope. I owe it to myself and my family.

His suggestion that I will just have to come to terms with the fact that we will never know, to me is giving up. It is the loss of hope. I cannot and will not do that.

Yes, I suppose I could give up if I just had a twinge here and there, or a numb big toe. But, when I have days where I have to think before I do anything for fear of paying for it later, then that is affecting my whole life.

Plus, to me, when one gives up hope, it means that they are no longer actively looking for answers...no tests, no specialists. How can one find out what is wrong then if they no longer look?

I'm all for treating symptoms. Especially, if it is done effectively. But, I've had too many positive tests results, and abnormalities on exam to just give up and treat symptoms only. Maybe I don't have MS, but something is wrong. Maybe it's the low copper and low vitamin D??? I just want answers (I know I'm preaching to the choir here)

Oh well, I guess I'm just thinking out loud. It sure feels good to get it all out.

Thanks for listening (if anyone is).

[IUMOM2]

Hi! Thanks. Yes, I know I do need to have patience and faith. It just gets to be so hard. I've been at this for four years now. I can deal with it most of the time, but after this last flare up (which was especially bad) I worry more.

I do get scared too. Maybe it's not MS, but it is something. I just don't think any of my doctors really get how this affects me on a daily basis.

Thanks for your kind words.

[IUMOM2]

Thanks for your support. My doctor confused me too when he mentioned the side effects of the meds. I believe it was his way of making me feel better. ??? I dunno.

The thing is, I have four lesions on my brain. I was told by the MS specialist that if I would have shown one more, they may have considered starting treatment.

My PCP seemed to be all over the place in his thinking today. He mentioned that even if my MRI didn't show lesions it didn't mean that something wasn't going on.

I am happy that he is trying to treat my pain. But, I did feel as if he didn't listen to me when I told him that the Neurontin and Tylenol helped with the everyday pain, but that every few months I had severe pain that nothing would touch. I guess I don't see any reason to start on another daily med for infrequent pain. Especially because it's not genric and will probably cost me $50 or $60 a month.

I do tend to be a hyper person, and I'm sure that shows in his office. I also admit to some anxiety, but I don't think it's at high enough level to treat (except for when doctors don't listen LOL).

Thanks for your help.

[wingnut19]

Hi

As you recall I was having almost the same experience on Monday....You told me to make sure to go to the MS specialist appointment..I agree!
I know it's frustrating to wait and wait, but we all have to do our bests to try and find the answers no matter what....
I am strong believer in the fact that just because your doctor (and mine) can't find the answers definitely does NOT mean the end of the road for us, right?
I am trying to have faith that even if the MS Specialist rules out MS, maybe they could give me some possible alternative to look at.
Please try and keep your chin up.....The answers will come, I just know it..
HUGS!
Tammy

[young at heart]

SWEETIE,

SOMETIMES INTERNIST DON'T HAVE ALL THE ANSWERS,MS IS NOT THEIR SPECIALTY.

I'M GLAD YOU ARE SEEING AN MS SPECIALIST.

FIBRO IS REAL AND MANY WITH MS HAVE FIBRO.ITS A START.WHEN WE HAVE NEUROLOGICAL DISORDERS,ANXIETY CAN PLAY A ROLE.

MANY OF US HERE TAKE AN ANXIETY MED,AND THEY DO HELP WITH THE ROLLER COASTER TO A DX OR EVEN AFTER A DX.

YOUR INTERNIST KIND OF CONFUSED ME WHEN HE STATED THAT IF IT WAS MS THAT MEDS WOULD CAUSE SIDE EFFECTS.FOR SOME THEY DO,OTHERS THEY DON'T.BUT IF THIS INDEED IS MS,THE DISEASE MODIFYING MEDS WILL SLOW THE PROCESS DOWN.

SOME GO YEARS BEFORE THE MRI'S SHOW LESIONS.

I UNDERSTAND YOUR FRUSTRATION.

I AM SO GLAD THAT YOU FEEL AT HOME HERE,THIS IS A FANTASTIC CYBER FAMILY.

DON'T THROW YOUR INTERNIST AWAY YET.PLEASE KEEP IN MIND THAT HE'S LIMITED IN SPECIALTY AREAS AND HE IS TREATING YOUR PAIN,SO HE IS LISTENING.

THE MS SPECIALIST WILL FIGURE THIS OUT.

MANY DISORDERS MIMIC MS AND FIBRO DOES SHARE THE SAME SYMPTOMS,WHILE YOUR WAITING TO SEE A SPECIALIST,YOU ARE GETTING RELEIF FROM THE PAIN,THATS IMPORTANT.

JUNE WILL BE HERE SOON

T-LYNN