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-   -   Today is my follow up (https://www.neurotalk.org/multiple-sclerosis/207726-follow.html)

summerjc07 08-05-2014 06:20 AM

Today is my follow up
 
I am finally going back after the MRI showed deep white matter changes that require a MS clinical correlation. So I get to see what is next for me. I have my journal with my reduced page of questions. I am going to ask to see the MRI on the computer and maybe a print out if possible. Then I am sure it will be just a referral to a neurologist because this office is just a Ophthamologist/Neuro specialist. The good news is I found a neurologist in the town next to mine so i shouldn't have a long drive every time I have to go in. (Thank you new hospital that opened up in March!)
I couldn't get anyone to go with me so I am facing it alone. My husband couldn't get off work because we just bought a new car and dont need to lose the income. But I admit I am alittle intimidated about the whole appt. And keep thinking I will get there and they will say i am fine. lol But that is unlikely :)
On a good note my daughter starts Prek next week!!! XD

Debbie D 08-05-2014 08:09 AM

Do you have an iPhone? you could record the doc's findings to certain questions that you wish to hear later, in case you forget what you're told...good luck...hope you get all of your questions answered.:hug:

SallyC 08-05-2014 10:50 AM

Good luck today Summer and please let us know how it goes.

Congrats for the PKKid..:hug:

Blancaboo 08-05-2014 01:24 PM

Good luck with your appointment. I hope they give you good information. :hug:

summerjc07 08-05-2014 04:43 PM

ugh... they looked at my optic nerves and said since I do not have optic neuritis (sp?) they did not think I had MS. He asked me what other symptoms I had that were MS related and I just kind of looked at him... I am only at this point because they can't tell me why I have double vision in one eye (monocular) So I am getting sent to a MS specialist. I should get a call tomorrow when and where that apt will be.
I didn't even get to ask a single question.
All he had was the MRI report (no dvd/disk) and he said that I had several white spots in my brain. I knew that already. :/

If this is MS it is very early. I guess. I have toes that contort/cramp. I have gone to the dr years ago for dizziness and hand pain in the past and stopped going to the dr. because I was just finding out over and over htat I was negative for rheumatoid arthritis. I have thyroid disease and get very fatigued. To the point of laziness some days. My eye sockets hurt when I have head aches but that is the only time they hurt.
I am not trying to get on the ms team but obviously the white spots are there, and the double vision is going no where. The only new symptom is that words go in and out of focus slightly when I read books.
There are a few things that I am thinking about that might be symptoms but I honestly have no idea. I have neck and shoulder pain only when walking out side for exercise and my hands swell really bad. But all goes back to normal if I cool down. I am trying not to take too much form this apt and wait for the ms specialist. but dang, he could have saved me the drive and called me at home. KWIM?!?! :mad::confused::(

cedarsleeping 08-05-2014 07:22 PM

Sorry it was a disappointing appointment ... however, you weren't dismissed if you are being sent to an ms specialist, so that is good.

I saw a couple of general neurologists before my first ms neurologist then had to see a SECOND ms neuro before my sx were taken seriously.

I'm just grateful that whatever I have ... this ms neuro is helping me figure it out, ms or otherwise, rather than just sending me home.

Be strong. It can be quite a process.

Edited to add: My hubby has not yet been able to attend an appointment with me! The ms clinic is Thursdays only. My hubby is in school three hours the opposite direction on Thursdays. I take a friend now. Well, with the double vision, she takes me ;).

summerjc07 08-06-2014 05:41 AM

Thanks :) That is one thing I keep telling my self that it could take a little while to get there. My husband told me he may have been trying to be flippant about it so I wouldn't worry since I was being sent to a specialist anyway. Who knows. I should get a call today for the appt. so fingers crossed. Right now I have a house to clean and a friends house to go to today for a play date. So that comes first today. :)

Quote:

Originally Posted by cedarsleeping (Post 1087425)
Sorry it was a disappointing appointment ... however, you weren't dismissed if you are being sent to an ms specialist, so that is good.

I saw a couple of general neurologists before my first ms neurologist then had to see a SECOND ms neuro before my sx were taken seriously.

I'm just grateful that whatever I have ... this ms neuro is helping me figure it out, ms or otherwise, rather than just sending me home.

Be strong. It can be quite a process.

Edited to add: My hubby has not yet been able to attend an appointment with me! The ms clinic is Thursdays only. My hubby is in school three hours the opposite direction on Thursdays. I take a friend now. Well, with the double vision, she takes me ;).


Debbie D 08-07-2014 07:40 AM

It took many of us years to finally get an answer to what the heck was going on in our bodies...

Keep that symptom journal going, and be as proactive as you can. You are a health-care consumer, and deserve the best that money can buy.

Are you in treatment for your thyroid?

NurseNancy 08-08-2014 10:48 AM

i'm glad at least that you are being sent elsewhere for another opinion.
get a copy of the report and go to where you had the mri and get a copy of the disc. all to show to the next dr (or others as time goes on.

you may have to sign a release to get the info but it's your legal right to get it.

keep us posted. oh, think of these drs (only the good ones) as being on YOUR team and you are the team LEADER. hold your head up high and straighten your back. that might help you when you see the new dr. you're in control and expect a productive appt. you also have a right to have at least 3 Q's answered.

summerjc07 09-02-2014 03:50 PM

Quote:

Originally Posted by NurseNancy (Post 1088017)
i'm glad at least that you are being sent elsewhere for another opinion.
get a copy of the report and go to where you had the mri and get a copy of the disc. all to show to the next dr (or others as time goes on.

you may have to sign a release to get the info but it's your legal right to get it.

keep us posted. oh, think of these drs (only the good ones) as being on YOUR team and you are the team LEADER. hold your head up high and straighten your back. that might help you when you see the new dr. you're in control and expect a productive appt. you also have a right to have at least 3 Q's answered.

I had my first appt at the ms center of atlanta! The dr. is awesome!!!! So far my reflexes are fine albeit toes that spasm and cramp on demand. She did see two smaller lesions that the radiologist missed. I have my LP on friday and cervical spine MRI the 29th. Since they do their own MRI's I will get the results that day with the dr. And we did the blood work last week.
The ms doctor said if I have lesions in my neck I will get the diagnosis and start treatments.


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