See Dr. Neur. tomorrow AM

[lavenderteawithme_33]

HI ALL.......

SO I HAVE EARLIER APT....NOW TOMORROW ...
FIRST THING. I HOPE I GET MORE ANSWERS.

HAVE TO GET TO BED. HAVE TO BE A SELF ADVOCATE IN THE MORNIG. I JUST WANT ANSWERS!! I HAVE MY QUESTIONS READY WITH THE HELP OF YOU ALL.

THANKS

[lavenderteawithme_33]

I'M UP AND SHOULD BE SLEEPING !

THINKING ABOUT THE DR. APT. I WONDERFUL IF DR. EVER IS UP THINKING ABOUT US AND WHAT TO TELL US?

I WILL CHECK BACK LATER...NEED SHUT EYE.

[lavenderteawithme_33]

Update on today apt. ufffffddddaaa!!!

Well done the apt. This is what Doc. said.

He said ....yes doesn't know what is going on with the eye or why it is having a "morris code chat" with my sphincter (having lots of bowel issues)I failed the bowel balloon test and have a muscle rexalant ointment to use to allow my bowels to complete. Yes...he new of my new IC bladder diagnosis. He was not worried. ????

He said that we have patient... doc. relationship for a long time (7 years) and that he said I don't have to be scared that it is a ms or cis or anything "BAD". Doctor did say he believes me (nice to hear) and agrees I have a lot of health problems.....but again nothing bad/dangerous going on. Wants to put me at ease he said.

He said by coming in it makes my anxiety worse (I was like o now he is going to use that anxiety line again. Just because someone has anxiety or depression doen't mean that health things are not happening. I hate hearing that!!!!! )

I told told him that I'm these things are not fibromylasia or menopause related. He is like yes. But he said he doesn't know what is going on and has not seen it. But he has been a docotor for a long time and has seen MS and really feels that it is not. But doesn't know what. Didn't think any tests were relevant and doesn't see any reasong to come see him.

Just to go see the Primary Dr. He would write the Primary Dr. that.

So....Im thinking that I have to trust him.????...?? Have a hard time with trusting doctors, since one Doc. went through
my bowels during my hysterectomy 7 years ago and ended up septic and in intensive care on ventilater. In hospital for 10 days. Got shingles couple weeks after that. So I do have that WHITE coat issue when I go to the Dr.s office....my Pauls is always up when I get there and then goes down once doctor leave.

I know I'm Truely haveing sx neuro. that are not Fibro. but are still undefined. Not sure what do do. Don't want to waste money or doctor time (expecially if there is someone who is worse off then I am).

So now im undefined and I don't even relate to the "limbo" status here. So I hope that I could stay for support if you don't mind? I'm feeling a bit ALONE with this actually and now crying in my car out side the clinic.

I 'm confused and would love advise.....but see if I read this I may say yes.....lavender....you have these symptoms but .....Idon't know. May say go do another opinion. Maybe there is nothing to find now. Just let it go for a while. Really in a funk ????

[minnie76]

Hi,

So sorry that you are going through this! I hear your pain when you said you're sitting in your car crying...been there...done that

If you get new symptoms, and they last more then 24hrs, call your GP and see if they think you need to make a new apt with the neuro.

I'm in limbo too!

Sucks when we have no answers!

Take care

Minnie 76
DX TN 2013
Limbo since 2012

[MarySunshine]

I am sorry to hear your appt didn't go well.

For a doc to say he's "seen ms and this isn't it" is a doc with a possible ego problem. (I don't know him so I can't judge). How can anyone have possibly seen all there is to see with MS (and he prob doesn't even have MS himself to begin to understand this).

I was in and out of limbo for 9 years (just got official diagnosis two weeks ago with a nasty flare). It was the 2nd neuro that I ever saw (recommended by my psychiatrist) that said "this is MS" and I won't go into the details, but he knew what he was talking about and was the one to diagnose me. His wife has MS. (now I have other docs who agree, too)...but I've been to docs who thought it was a collegen vascular disease (even one "pro" who I saw recently on the NMSS website in an informational video)....had one MS "expert" call me a hypochondriac 3 months after I nearly died (from the flu/pneumonia and Uhthoff's related breathing trouble).

Doctors are just people....and they are only as good as their weaknesses.

Of course you are still welcome here! That's what limbo is for! I have a blog and I'm not sure how to share it, but it's for people struggling with a lack of diagnosis and the mental garbage that goes with it. I don't do it for profit (it's actually theraputic)...it's about bits of my 9 year journey and how to laugh at the strife. Maybe I'll try putting the link in my profile if I can figure it out.

I hope you are feeling better, at least emotionally. Shrug it off. Just cuz a doc says it's not a fish doesn't mean it's not a fish. (Maybe doc needs glasses)...lol


PS....I always have anxiety before doc appts due to what I went through. Who wouldn't have anxiety when you have serious issues and no "name" or definite course of action for them? It's normal. You're okay

[Pipes123]

Have you been seen by an eye doctor for your eye pain? (Medical doctor/ Opthalmologist not optometrist)

Also, what does your primary care doc/ general practitioner doctor have to say about these bowel issues?

Have you had mri's or a lumbar puncture, or evoked potentials? Were the mri's recent?

My neurologist was convinced I didn't have ms. My symptoms were not what he thought 'typical'. Until the day part of my body wouldn't move and he changed his mind.

I'm just saying that neurologists can be wrong, especially when they are certain they already know the answer before they see you in the office.

A different neurologist with a specialty in ms might give you a different answer. Or a different neurologist might confirm that it is not ms.

[lavenderteawithme_33]

THANK......MINNIE76


"If you get new symptoms, and they last more then 24hrs, call your GP and see if they think you need to make a new apt with the neuro."

IS A GOOD IDEA. NICE OF YOU TO REPLY .

[lavenderteawithme_33]

MarySunshine

"Of course you are still welcome here! That's what limbo is for! I have a blog and I'm not sure how to share it, but it's for people struggling with a lack of diagnosis and the mental garbage that goes with it. I don't do it for profit (it's actually theraputic)...it's about bits of my 9 year journey and how to laugh at the strife. Maybe I'll try putting the link in my profile if I can figure it out.

I hope you are feeling better, at least emotionally. Shrug it off. Just cuz a doc says it's not a fish doesn't mean it's not a fish. (Maybe doc needs glasses)...lol


PS....I always have anxiety before doc appts due to what I went through. Who wouldn't have anxiety when you have serious issues and no "name" or definite course of action for them? It's normal. You're okay "

THANK YOU FOR YOU KINDNESS. I LAUGHED ABOUT THE FISH STATEMENT ....TOO FUNNY....
I WILL CHECK YOUR BLOG OUT.
I'M BETTER SOME BUT IN FUNK SOME STILL. VERY TIRED..WAS UP LATE AND HAVE DH PARENTS IN TOWN. SO GOOD DESTRACTION.

[lavenderteawithme_33]

Have you been seen by an eye doctor for your eye pain? (Medical doctor/ Opthalmologist not optometrist)

Also, what does your primary care doc/ general practitioner doctor have to say about these bowel issues?

Have you had mri's or a lumbar puncture, or evoked potentials? Were the mri's recent?

My neurologist was convinced I didn't have ms. My symptoms were not what he thought 'typical'. Until the day part of my body wouldn't move and he changed his mind.

I'm just saying that neurologists can be wrong, especially when they are certain they already know the answer before they see you in the office.

A different neurologist with a specialty in ms might give you a different answer. Or a different neurologist might confirm that it is not ms.

THANKS......
yes i have been to my regular eye dr and to md eye dr. "My" eye non md dr. was concerned when first came in with eye pain last year. she thought on and to see my neurologist. again....She wrote a note to him. She didn't see anything however...but know me and that left eye.
So.....did another Mri of head 2nd one (first full body mri i think in 2009 or2010.,..,they were all clear) so the 2nd head one was clear....eye looked good and neuro. sent me to MD eye doc. how said MRI was clear you are fine.

I then asked for that envoke p. test....clear(last year) but at time neurologist says....dosent mean you don't have ms. (WHAT)?

NO LP AND HAVE ASKED FEW TIMES...HE GETS ME OFF TRACK...I FORGET AND LEAVE OFFICE. HOWEVER , I DID CALL BF THIS APT AND TALK TO NURSE AND TOLD HER THOUGHT IT MAY BE TIME FOR IT DUE TO NEW SX. I EVEN ASKED HOW DOSE THEM. SHE SAID SHE WOULD TELL HIM.

SO NOT SURE WHAT TO DO. MAYBE SECOND OPINION OR CONSUT WITH NEW DOC. ALL TOGETHER. OR WAIT FOR THE NEW SX TO CREAP
UP? PC SENT ME THE FIRST TIME TO NEUR. I ASKED FEW WEEKS AT PREOP FOR BLADDER BIOPSY AND HE SAID YOU DON'T HAVE MS. WHEN I TOLD HIM ABOUT STUDIES REGARDING SHINGLES AND MS.....HE SAYS SO TALK TO NEUROLOGIST .

I BASICALLY GET RUN AROUND WITH BOTH.

[22cyclist]

lavenderteawithme: It sounds like you have been adequately tested for MS at this time, and all of your testing came up negative. Your MRIs, VEP, and neurological testing were normal, so you do not have MS or another serious neurological disease, which is good. Now you can start looking for what is wrong, or waiting for a new symptom to come up and go for further testing for neurological testing.

Of course you are always welcome here. That is what limbo is for! I hope you will keep updated on your journey. However, you may want to consider something besides MS as something to hunt for. Eye pain and numbness are so nonspecific that they could belong to any number of diseases, or none at all.

I hope you feel better really soon.
We will see you around I hope.
Take care
Lisa

[lavenderteawithme_33]

I have more sx then just the two you listed..please read my other posts. Thanks for your ideas.

Being in limbo is a HUGE BUMMER!! NOT that i want MS.(nowone should have this disease...or any of the sx with it or other related issues)....but want answers. Been in a funk since last Dr apt. slowly climbing out. See urologist on Tuesday to chat about how bladder biopsy went and what the plan is. Can ONLY DRINK WATER......EVERTHING BOTHERS BLADDER.