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Old 08-02-2009, 12:07 PM #1
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Default Be patient or push harder?

A very brief history:
I am undiagnosed and have done several rule out tests this summer that all came back normal: nerve conduction, eeg, full blood workup, etc.

I had a brain and full lumbar MRI almost 2 years ago (clear) and just the brain, no spine, again in April or May of this year that was also clear. I see my neuro again in October.

Opthamologist found last month that my vitreous seems to be seperating (at the young age of 32) and a blind spot in my right eye. I see her again in 3 weeks. She didn't say anything about my optic nerve and I totally forgot to ask while I was there but she did dilate my eyes and said the retina looked good.

My eyesight has gotten a lot worse since I saw my opthamologist. My eyeballs ache if I focus on something for more than a few minutes. If I keep going, I end up with a horrible headache. I have to strain to focus, I have a lot of blurriness and the blind spot seems to be more noticable..this could just be my imagination though, as I hadn't realized I had a blind spot until the opth told me. But I feel like I"m trying to function without my glasses and have actually touched my face several times to see if I am wearing them because it's so hard to see.

My legs are very weak. I try to walk to the gas station one block away several times a week to try to keep moving and build up stamina but it is very hard on me. My right knee gives out and within half a block I'm limping.

In the last few days my legs have gotten weaker. Last night I was standing in our backyard talking to my husband and it was all I could do to concentrate on keeping my legs under me. They were wobbly and weak and both knees tried to give out several times.

My question is what form of action to I take on symptoms that seem to be getting progressively worse each day? My eyes and my legs are really bothering me. I know that neither is most likely an emergency and I know that any tests I have if I ask to be seen would probably all come back normal, as they always do but, I'm wondering at which point should I seek attention sooner than my scheduled appointments?

My opthamologist appt being not for another 3 weeks and my neuro appt not being for another 2 months, should I just write down these symptoms when they happen worse than usual and save that for these already scheduled appointments? Or is this bad enough that I should call the opth and neuro and try to get sooner appointments?

Basically I"m trying to figure out if I'm making a big deal out of little things or if they are worthy of being seen sooner.
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Old 08-02-2009, 12:51 PM #2
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Ruthie, if I had increasingly worse sx, I'd make a BIG DEAL! It's your health that's at stake. Good luck to you.
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Old 08-02-2009, 02:00 PM #3
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Sorry you're feeling so poorly, Ruthie. I'd definitely keep a diary of my symptoms so I could take it with me to my next appointment. I'm famous for forgetting the one very important thing I wanted to discuss.....

If you cannot see the Neuro right away I'd at least call and report my worsening symptoms so they can make them a part of your records. Once hearing them they might move your appointment up for you.

Good luck!
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Old 08-02-2009, 02:32 PM #4
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Quote:
Originally Posted by Kitty View Post
Sorry you're feeling so poorly, Ruthie. I'd definitely keep a diary of my symptoms so I could take it with me to my next appointment. I'm famous for forgetting the one very important thing I wanted to discuss.....

If you cannot see the Neuro right away I'd at least call and report my worsening symptoms so they can make them a part of your records. Once hearing them they might move your appointment up for you.

Good luck!
Your suggestions are spot on. It is always better for the patient if she can get to the doc when the symptoms are visible and not after they disappear.

gmi
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Old 08-03-2009, 09:17 AM #5
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Thank you all, I will call them today.
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Old 08-03-2009, 09:28 AM #6
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Quote:
Originally Posted by gonnamakeit View Post
Your suggestions are spot on. It is always better for the patient if she can get to the doc when the symptoms are visible and not after they disappear.

gmi
That's what I was gonna say. My neuro is always booked 3 mos out, so I never can get in sooner. But I can call and have them note my issues. I'd rather he actually saw firsthand.

One person - who could not get in when she wanted/needed - said she actually just went and sat in the waiting room until they finally made time for the doc to see her. Might not be a bad idea for some of us who just can't do it any other way I guess.


Kitty - spot on. Write the important stuff down.
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Old 08-03-2009, 09:48 AM #7
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Ruthie, do you have a PCP? Sometimes they can see you sooner and help with relief for your symptoms, while you wait.

Patience is a virtue...one of which we, (PwMS), are NOT blessed..

Do call you Neuro and your Optho and inform them of your pain...now....maybe, they will squeeze you in.

Feel Better..
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Old 08-03-2009, 07:21 PM #8
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Well I was able to get an apt with the opthamologist this week but the neuro's next avail is the 17th. Still better than October. But she did ask what the sx were and wrote them down for my neuro.
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Old 08-05-2009, 12:08 AM #9
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Hi Ruthie,
Welcome!
When your eyes or your mobility worsen or get a new problem, always call the doctor to get it documented, and try to make an appointment too.

These two parts of the body are so important you can not let it go without being checked. As for wobbly legs, in the meantime, try to stand with your legs a little wider apart. That gives a better stance and balance.

I have a vitreous detachment that is being monitored. I don't believe it is MS related. I have no pain but I do have a slight fog to look thru. My vision has not changed. I have had Optic Neuritis and this feels different to me. We are all different though.Have you eye doctor check your Optic nerve for pallor or swelling.

If your MRI is clear it may be a while before any diagnosis of any kind can be made. Some of us it took years, other very quickly. But don't neglect your eyes for any reason. Good luck to you. Let us know how you make out at the eye doctor.
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