new here and undiagnosed

[momm2two]

Hi!!

I am new to this site and not diagnosed. I am hoping for advice with how to deal with the doctor to get him to really listen to me! I have been sick for over ten years off and on. I was diagnosed with fibromyalgia, interstitial cystitis, migraines, and endometriosis. I have odd symptoms, like pain, extreme fatigue, face pain, dizziness, forgetfulness, trouble speaking, falling, etc. The list goes on and on. 5 years ago I had about a one month spell where I would wake up at night and couldnt move. Not one bit. After about ten minutes I would be able to slowly start getting feeling back in my legs and start to move. Thankfully nothing that severe has been back since. I get numbness, tingling, and I have trouble seeing. I would say most disturbing is the forgetfullness and trouble speaking, because I know thats not me! I have been to the doctor too many times to remember, and I finally quit going to the doctor and gave up about a year ago. I am a walking zombie. Each day is a game of survival. I get up, go to work, come home, try to raise two children, and LIVE for the moment when I can finally put my body back to bed. My search for an answer is starting again June 8th with a neurologist. What recommendations do you have in talking with him?

mjan, thanks for the referral to this site!

[KoKo]

Hello momm2two

Welcome to MS World!

Sorry you've been dealing with so many symptoms. That's alot to live with, and then working and raising children too

I have no idea how to make your doctor listen to you, but thank goodness in a few weeks you will have your neuro appointment.

It would be a good idea to write everything down regarding your symptoms, how frequent, the duration, the intensity, etc. Document e-v-e-r-y-t-h-i-n-g!! That way you won't forget pertinent things while you're there, and the neuro will get a bigger picture of what's going on.

Hope you benefit from the various forums here. So glad you found us here

Take care,
KoKo

[mjan]

HEY HEY girlfriend.. so HAPPY to see you here~!

You'll love the folks..many more to help you and support you.

Also, try the weekly limbo check in lead by Minivanmama

How are you really tonight my dear? You can also email me anytime you need to

HUGS..

Jan

[CocoH]

Sorry to hear about your struggles. I'm glad you are seeing a neuro as it sounds necessary. I'm assuming he/she will send you for an MRI. As was said before, document everything. Go in to the neuro appt with your list of symptoms AND your list of questions. I will cross my fingers that you have a good, patient neuro who will truly listen to all of your sypmtoms and questions. Every time I go to my neuro I have my list of questions in hand. One thing you may also want to do is have a pen handy & write down the answers you are given so you don't forget.
Unfortunately, the road to diagnosis can be extremely frustrating. Remember this is your life & advocate for yourself. Ask lots of questions & make sure you are comfortable with the answers you are given. Best of luck to you. Please keep us posted.

[Denlie]

I have my first neuro appt on June 8th too!

Hopefully we will both have a good start.

[KoKo]

yes! list of questions too!

Momm

CocoH is absolutely right - take your list of questions too!! (it's just as important as your symptoms list) It is so easy to leave the office having forgotten to ask some very important things.

Take care,
KoKo

[mjan]

Good morning Momm!!

I have MY neuro appt on June 3rd. Supposedly for 2nd opinion and help with DMDs. Have a complicated medical history that will affect taking ANY meds.

But she is my 2nd MS doc..and 6th neuro, imagine that!!

Hope you are resting this weekend..

Warm hugs my dear one

Jan

[momm2two]

Jan how are you doing? It's getting closer to your appointment! I will be thinking of you!

[mjan]

Hello~~!

I am dealing with my back/legs bothering me.. always something.

Could not remember (duh) if YOU said you got an appt to a MS neuro yet..did you?

How are YOU feeling mmom ???

Write anytime.. you can email me if you like

Jan

[momm2two]

I am fine Jan. I do have an appointment with neuro, but I am thinking of cancelling it. I just dont want to go through a battery of tests AGAIN to find out nothing.

I am getting frustrated with how difficult it is to read lately. I love readding and i just cant seem to comprehend anything right now. Boohoo.

I am soooo forgetful too Jan! I am finding that I am not alone!!

Take care of you and keep us posted on your appointment!

[mjan]

I hear ya.. why you dont want to go through all you have just been through.

BUT.. if this is an MS doc talk to him/her about your concerns and doubts. To get their first impression of you via a neuro eval is worth.. or not?

Talk to me gf..

Jan

[casey31384]

hi there! I just joined the site, have been looking for others to talk to and get opinions from, about what i have been going through! However i can't find a button that allows me to make my own post! Anyways, i am undiagnosed myself, with 3 young children, and have really been going through episodes since 2006 ish, but when i wrote my history down i couldn't believe the unexplained pattern of symptoms i had been having practically my whole life! Momm i know how you feel about a new doc and the battery of tests, i'm there right now and had fired my doc in 2007 and haven't been seen since until recently, i absolutly hate being told "i don't know" by the doctors, however we can't begin to take a step in the right direction until we find the right doctor and the right diagnosis!!! Keep trying!!!

[ShakespeareMama]

casey - you'll see a button marked "new thread", under where it says General Questions and Answers in bold and over the start of the threads. I hope you can find it!

momm - don't be afraid. I'm on round 2 of the battery of tests, myself. It's a pain...but not as bad as the mystery pain in my body. Don't quit. You can do it! We need answers!

mjan - you're so freakin' awesome.

[KoKo]

Hello Casey

Welcome to MS World!

If you want to start your own thread:
Scroll down to Forum Jump
Click Go (General Questions and Answers)
Scroll down to the last thread
Under the last thread, on the left, click on the New Thread button.

Hope this helps!

Looking forward to more of your posts.

Take care,
KoKo

[atsmhn]

mom dont change appoint

Don't give up before you are there! Have you had Mri or spinal tap's yet. What about the evoke testing. Chasing the kidos can be a tough one. I've got 3 little ones myself and have been newly dx. I had very minimal symptoms for about a year and was slammed with a ton around the holidays.
Make sure you are armed with the questions you have and dont leave until you feel you have gotten some answers. Just dont cancel your appointment, you know how long it can take to get one.
good luck
atsmhn