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Old 03-12-2009, 11:48 PM   #1
mommasita
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Question Feeling a little uneasy. (long, sorry) UPDATE POST 44

Hi everyone, I hope you are all well.

I am doing as well as can be expected. I have been given the lovely diagnosis of 'probably MS" after my last scan, and am now to see a neurologist. When I first got the call from his office, the secretary said he has absolutely no openings until April 27, and I said Thank you very much, etc. Two nights ago the telephone rings and she is adamant in telling me that after receiving my file and zillion tests and bloodwork, I need to see him much sooner than that, so she gives me MONDAY. This coming one, and she was extremely nice, as I must have sounded nervous (what else is knew), and that to bring my referral, and any drugs that I take, and we hang up. She has since called me 2x to confirm the appointment, and make me fully aware that I MUST go Monday. Gosh, I said, no problem, Monday it will be. She says, I just want to stress the importance of this!! Asks me if my partner can come with me. Whoa had me there. I said I don't think so, my husband will be home with the children. She says if it is at all possible to find a way for him to come, he should be there. Thanks nice lady.

I got to thinking maybe this Dr, is in need of patients, or whatever, so I did some searching, and he is VERY highly rated, a specialtist in MS, and on his site it has patients putting in their experiences with him, and they speak highly, and that the only thing that is bad is the waiting time between appt's. So I guess he is ok. Perhaps it is just it all in one basket that makes me uneasy.

Now to any with any experience. Should I make a list of my symptoms, my every day problems, or would that make me foolish, as he is the Dr. I just know I tend to get nervous quickly, and may not say the half of what I wanted, and come home and .. I am thinking I may do this anyway, and if I don't feel comfortable sharing, or he does not ask, just keep it in my purse.

I just a ball of nerves lately, not working makes me feel odd. I know that I could not right now, it jsut would be out of what I able to do, and that is not it. They are busy at work, and that makes me feel badly, but they are nothing but nice, as they know why I am on STD. I also want to get back to work soon, taking it slowly, not overdoing it, and I am just hoping for the OK on that. My husband is well, he does not deal very well. As loving as he is, and he is, he is just LOUSY with anything serious. He said, do I have to go Sher? I said no hon, you don't, stay with the kids. Sometimes easier that way.

So basically just that. Sorry to ramble, am having another insomnia filled night, and all these thoughts are scrambling through my brain.

I did want to share some good news, and some GREAT news. My firstborn will be 13 on March 18th, and it simply amazes me that my baby is now a teenager. The GREAT news, is my SIL is pregnant 16 weeks. I will be an AUNTIE, and that really makes me excited. She sadly lost a baby last year at 12 weeks, and wanted to wait to tell us (normally). I just am over the moon with joy, as our my children and DH. More babies for our Italian close family.

If anyone has any insight thoughts on what to do for and at my appointment, or even what might be expected on a first time visit, please share them if you can, it would be appreciated.

Take care everyone.
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Last edited by mommasita; 03-27-2009 at 10:02 PM. Reason: typos..
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Old 03-13-2009, 04:57 AM   #2
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Sending back to you

I would make a list of symptoms and questions. It really will help. If your husband can't go, is there someone else that can be with you? Having someone else there to listen and get the information can be helpful.

While I have no one close to me that has MS, I have several co-workers and friends that have the disease. It is different for everyone.

Good luck to you.

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Old 03-13-2009, 06:57 AM   #3
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Yes diffently make a list of symptoms. It will help. Also do you have someone who can go with you. What one person forgets the other remembers.

Also know that MS mimics many things. I was given the diagnoses of probable MS last April. I was rushed to an neaurologist who told me that MS mimics many things including low B12 in your body. So don't let yourself get upset. My neurologist ordered more MRI's and blood work (a lot of blood work). My tests came back that two disc in my neck had pushed my spinal cord out of place, that my B12 was low and I had dopemine leaking in my brain (both of parents have/had parkinsons). My symptoms were pretty severe so I really thought I would have MS, lupus, or something else.

I was rushed once again to a neuro surgeon because for me at this point there was nothing else that could be done. If I had gone back to the chiropracter (which I liked a lot), had a simple car accident, fell or picked something up the wrong why I was in danger of near fatal or fatal injuries.

So try to relax---I know how hard that is. Wait and find out what the dr says. Get second opinions.

I worked in the medical field so I also know that a lot of recieptionest try to sound like that on the phone. Also a lot of drs don't like no shows (of course) so they are told to stress the fact that you can't miss your appointment.

It is good to check out your dr! I have always done that for myself and family members.

I will keep you in my prayers. Keep us informed. You can vent or talk anytime--we are here for you.
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Old 03-13-2009, 09:04 AM   #4
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Thanks to you both.

I do have Pernicious Anemia, and have b12 monthly shots, given at home. According to my GP, this has nothing to do with my B12...

You have given me some things to ponder. Thank you very much.

There is noone else to come with me, as I have not shared with my family (other than Dh), until we know for certain.
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Old 03-13-2009, 10:31 AM   #5
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I would definitely make a list of symptoms and things you want to tell the dr, but make sure that it is no more than a page or so - in my experience, they only will read for so long... I find it easier than trying to remember it all. (been searching for a diagnosis for 10 years - almost there!)
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Old 03-13-2009, 01:28 PM   #6
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Ok.. these are my thoughts.. first lot of hugs and I will be checking for you on Monday to let us know how it goes..

Do make a list....questions, statements, whatever you need to get through that appt without forgetting anything..

I am wondering here why they are insisting you have someone with you......probably because they know that you may not absorb everything that will be said that day. I would bring a tape recorder and ask if they mind if you record what is said in the room so that you can review it later when your mind is more clear... No test are being done that day that you would need someone with you??

Hugs..
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Old 04-17-2009, 06:46 PM   #7
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Dear mommasita...
I remember the day when 5 stanford doctors told me i had MS...it was like a wall going up and i was bricked inside the wall. well...it is 22 years later and i want to encourage you to NOT GIVE UP and not give in and stay healthy and eat right and exercise, exercise, exercise and more exercise.

1. when your legs feel like cement...get up and walk...force yourself
2. when you whole body wants to throw up...not your stomach but your limbs get a nauseated feeling...drink water and go for a walk.
3. when you start to feel sorry for yourself...think of someone far worse off than yourself.
4. when you get up every single morning try doing this: open your eyes and say thankyou to what ever being you might believe in. be thankful you can walk, talk and see...in whatever form...for my dear lady...that is a great day.

ms does take a while to sink in...but you can become your own worst enemy...truly...you must literally get hugely strong within yourself and keep moving. if you don't you will go down hill more quickly than you had hoped. i am living proof. my mri's show paralysis on my left side...well...i am proof that the brain and sheer willpower can retrain the body. i work out 3 days a week and take zero meds. it can be done...but much of it is mind over body and remaining really strong. don't give into the disease...

my very best to you.
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