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Old 02-05-2013, 10:30 PM #1
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Default Possible MS and Pursuing Dx...

Hi,

I'm new to the NeuroTalk forums...and have found them to be extremely helpful in answering my questions. I originally joined because it was suspected I had CRPS after spraining my wrist last Fall. I went to a highly recommended rheumatologist for confirmation/treatment. After taking my medical history, she referred me on to a neuro for testing for MS.

My neuro appt. is scheduled for the 22nd of this month. I fear I may lose my mind before then!

I've had several symptoms off and on for the majority of my life. Lately they have been really bad and I feel as though they are "taking me out of my life"...I don't feel like doing much of anything. Also, my fear is that the symptoms will diminish before I get evaluated by the neuro and it may prolong any possible Dx. My question is -- if I do have MS and it goes into some type of remission (or whatever) before the appt...will the neuro still be able to pursue a Dx? I'm really just maybe over-thinking this whole thing...I just want some answers.

My symptoms recently have included: tingling/numbness/pain/and electric shocks all over my body (including my face), muscle weakness, a tremor in my hand, blurry vision, bouncing vision, vertigo, loss of balance (almost fell this past weekend), headaches, extreme jaw pain, bone crushing fatigue and bladder issues. Today it felt like someone increased the gravity here on Earth...it was SO much effort to move!! In the past, I've lost vision in my left eye. Recently, I get the sensation that i'm going to lose my vision again, but I don't.

I guess mainly I just needed to vent....and I'm sure many of you may understand what i'm going through. I'm kind of a wreck...I think at this point I would be more surprised if I don't have MS than if I do!

Thanks for indulging me in my rant. Sorry for the rambling...i'm kind of stressed beyond belief!!
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Old 02-06-2013, 10:07 AM #2
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Welcome to NT...it's always helped me get info, support and laughs too...

Whether or not your symptoms diminish will not deter the doctor from investigating. Make sure you write down your symptoms (a symptom journal) with possible date of onset and diminishment. Also write down any questions you might have for the doctor-once you're in the office they might disappear.

If you can bring someone with you, do it...it helps to have a second set of ears.

I worry about your vision problems...try to be careful, especially with vertigo. I know how suddenly it can crop up.

And if you don't get a definite diagnosis immediately, don't give up...it took most of us years to finally get a diagnosis. Your symptoms could also be from other disorders.

Keep us posted on what's going on, and let us know what the doctor says...we're all "experts" at this process, and can give you advice and hugs...
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Old 02-06-2013, 12:47 PM #3
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may I caution you not to expect the diagnosis/answer on that first visit. Some folks gets diagnosed fairly quickly, others remain in limbo for a good while.

Expect a lot of seemingly silly test (stand feet together & eyes closed; touch thumb and finger; etc) They give clues. Perhaps MRIs (w/contrast and without), possinly labs and an LP

Regardless of what the neuro may tell you- WELCOME!
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Old 02-06-2013, 02:33 PM #4
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Sam Welcome to NT.

Lots going on with you as Jane mentioned do not expect a diagnosis at once or all that quickly. Expect that the neuro will have you taking tests and getting MRIs

Debbie gave you great suggestions which I recommend as well.

If I have learned one thing since my dx in 2006 it's that we are all like snow flakes no two of us are a like.

Mike
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Old 02-06-2013, 03:56 PM #5
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hi sam and welcome to NT,

the 1st thing i would encourage you to do is take a few deep breaths.
i remember how stressed i was going thru the dx (diagnosis) process, and it can be a process. you dr will likely take a hx (history) and do a neuro exam.
then he may order tests to rule out other illnesses. often MS is a process of elimination.

it took me 2 mos to get my dx and i consider that to be fast.
briefly and succinctly write down the dates and sx's (symptoms) you have. if you can get to an opthamologist for an eye exam that would be one area to get info on for the neuro. otherwise ask him for a referral to an eye MD or an MS opthamologist.

i agree that taking someone to your appt would be a good thing. another set of ears is helpful. if you've had other test bring the results with you. your dr will find your records helpful.

in the meantime please be gentle with yourself. try to take just 1 day at a time. it doesn't help to think about the future until it happens.
stay in touch with us. we're here to listen and answer your Q's.
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Old 02-07-2013, 08:56 AM #6
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Thank you everyone for the great feedback! I have a friend who goes to all my appts with me when she can. She also keeps me very grounded and in the present. For example a friend of ours came up to me last night and said, "have you ever considered that maybe you "JUST" have a brain tumor?" And my friend (whose parents are doctors with lots of experience in this area) pointed out that I would also have diminished cognitive function and a much more specific/pointed set of symptoms (not the "mosaic" of symptoms I am experiencing). [not saying it's outside the realm of possibility that it's a tumor...but what she said makes sense and keeps me from jumping off into the deep end of worry].

The rheum did a bunch of blood work...I will be sure to get a copy before going to the neuro. Also, I've started keeping a journal of Sx...thank you for the suggestion. And, I've started a list of past relevant Sx and approximate dates. I guess since I have such an extensive history, I was hopeful that would make the Dx much quicker. I appreciate you all letting me know that may not be the case.

Also, I will see if I can get in somewhere for an eye exam before the appt with the neuro. That's a great idea!

Yesterday I was a wreck (physically and emotionally). Today I feel emotionally better. I'm learning to take care of myself and am so grateful to have found this group. Thanks again for taking the time to respond to my post!!
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Old 02-07-2013, 10:55 AM #7
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Hi Sam! Welcome to the MS Forum!

Your neuro will be able to still dx you even if you are not having symptoms. However, it may take some time as others have stated. Make sure your neuro has the records from your rheumy. I think that will be very important as your rheumy may have observed neuro symptoms and that will be documented. It will help your neuro in making a diagnosis.

I hope everything goes well. Let us know and feel free to ask us any questions.
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Old 02-07-2013, 11:25 AM #8
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might I also suggest trying to keep a copy of all tests, reports, etc. It's important that you have this in case you change docs...otherwise you lose info or they charge you when asking for your records.

Keep trying to find something good in each day. Trying to figure out what is going on can drive us crazy...if you can get out of that mode for just a few minutes a day it helps, really it does.

In the meantime, try to eat well, stay hydrated, and try to take a walk or get some type of exercise a few times per week. And plenty of rest too. Our bodies are our vehicles for getting around this great planet, and we need to treat it as we would treat our cars-good fuel and keeping it in top running order no matter how many rattles we hear
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Old 02-07-2013, 11:29 AM #9
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Hey Sam-

The things nobody mentioned is our offbeat humor & outstanding good looks. BTQ-We can be bribed (umbrella drinks & chocolate are poplular hee hee). Oh, and we will need to teach you the secret handshake...


*all said in jest, in order to bring a little smile to your day
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Old 02-07-2013, 12:19 PM #10
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Welcome home Sam..
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