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Old 04-29-2012, 07:02 PM   #1
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muffin862 HB User
New member in Limboland

Hi everyone.

Just joined the forum. Have been sitting in limbo land for close to 2 years.

Have had a MRI with one confirmed lesion on my spinal cord, so far ruled out everything except MS or an old injury. So still in limbo. Dr has not ordered new tests yet, guess she's just waiting to see what else comes up.

Last appointment she noticed my left hand was shaky when doing to nose to finger test and my left leg was weak. I couldn't push too hard on her hand.

Its a confusing time, i am not sure what is going on or if i am even dreaming what i feel. Last week i had both my elbow and wrist lock up on me. I couldn't bend either for over 48 hrs. I know i didn't fall or hurt it. Not quite sure what i did to it. I don't see the doctor till next April so cant tell her about it. I tend to forget things that happen by the time i see her, If i am feeling good that's what i tell her. Not used to trying to remember everything that may or may not have happened over the months/year or telling doctors about ever ache and pain.

I have fallen 3 times in the last 3 months. Not the norm for me. Last one was down the stairs . Good thing i didn't seriously hurt my self. I did remember to tell her at my last appointment. She didn't say much about it. Just said to call her if anything happens. (what is she looking for?) I didn't call her last week when elbow or wrist locked up. I didn't think it was part of MS. Now i am second guessing my self.

I am so confused over what i should be watching for and what i shouldn't be. I don't want to sound like a baby telling her everything little thing that is wrong. Is it wrong to feel so confused over this?

 
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Old 04-29-2012, 08:14 PM   #2
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: New member in Limboland

HI muffin,
Welcome to healthboards. You wrote "I don't see the doctor till next April so cant tell her about it". Then you wrote that you have fallen in three months and she doesnt know this either?

Is there a reason you cant call the doctor and see her sooner or at the very least let the office know this is happening and ask them if they want to see you?

You stated that you sometimes forget things that happens months before you see the doctor. Thats normal, which is why its SO important to call when they happen, even better SEE them when its happening, and to also take notes on what goes on with you. There is a fine line between being a hyperchrondriac and calling about every little thing- but using common sense and realizing that falling, can be quite dangerous and should be talked about.
During limbo land, a MS specialist will do a MRI every 6 months...this way, whatever is going on is usually still able to be picked up radiographicaly. If you wait a full year to talk to your doctor, then whatver went on with respect to lesions and damage, will no longer be happening.....

Are you seeing a MS specalist and when was your last MRI? You said you have one undiagnosed lesion in your spine....have you had a brain MRI with and without contrast?

This doesnt sit well with me. YOu absolutely need to see and talk to your doctor whenever any symtom which causes you to fall or have numbness happens..not months later. By then, there will be permanent nerve damage (possibly) but too late to do anything about. PLease call and get in sooner...
Nikki
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Old 04-29-2012, 08:21 PM   #3
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Re: New member in Limboland

Welcome.

Are you seeing an MS Specialist? Where are you in the Revised McDonald Criteria?

Keep a journal and record what is happening. Some things might seem inconsequential, but to an MS Specialist they can be like a flashing neon sign. Allow the doctor to review your journal with you. As you gain insight and experience, you will learn what is MS and what is not MS. Keeping a journal can also help you determine what your triggers are. For me, knowing my triggers is the one thing which empowers me.
__________________
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MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 04-29-2012, 08:39 PM   #4
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muffin862 HB User
Re: New member in Limboland

Quote:
Originally Posted by MSNik View Post
HI muffin,
Welcome to healthboards. You wrote "I don't see the doctor till next April so cant tell her about it". Then you wrote that you have fallen in three months and she doesnt know this either?

Is there a reason you cant call the doctor and see her sooner or at the very least let the office know this is happening and ask them if they want to see you?

You stated that you sometimes forget things that happens months before you see the doctor. Thats normal, which is why its SO important to call when they happen, even better SEE them when its happening, and to also take notes on what goes on with you. There is a fine line between being a hyperchrondriac and calling about every little thing- but using common sense and realizing that falling, can be quite dangerous and should be talked about.
During limbo land, a MS specialist will do a MRI every 6 months...this way, whatever is going on is usually still able to be picked up radiographicaly. If you wait a full year to talk to your doctor, then whatver went on with respect to lesions and damage, will no longer be happening.....

Are you seeing a MS specalist and when was your last MRI? You said you have one undiagnosed lesion in your spine....have you had a brain MRI with and without contrast?

This doesnt sit well with me. YOu absolutely need to see and talk to your doctor whenever any symtom which causes you to fall or have numbness happens..not months later. By then, there will be permanent nerve damage (possibly) but too late to do anything about. PLease call and get in sooner...
Nikki
I just saw my neurologist last month. I did mention the falls to her but at the time i chalked it up to bad knees. I used to fall a lot as a child so i assumed my knees were acting up again. And i told her i suspected that. My last MRI was in August. She told me that she suspects most of my symptoms are due to migraines i get but that i could still have slow progressing MS. I also have 3 discs in my spine that are damaged so again, i keep suspecting that's whats causing my issues and she just agrees with me. Cant say if she is agreeing just because or if she is thinking something else.

I was referred to her after i had a MRI for a bulge in my spinal cord that sent me for a MRI without contrast (they suspected Tumor). They found 3 bulging discs and one lesion near my neck.

At the time i was having symptoms of
dizziness
blurred vision
migraine's
numbness in fingers
tingling in head
forgetfulness, (can forget a full conversation)
and tiredness.
Urine urgency. (barely make it to the bathroom some days)

I do have a thyroid condition that is being controlled so a lot of those symptoms i thought was just my thyroid messing up.

I am just not sure when i should be calling her and when i shouldn't. I didn't think the stiffness in my wrist and elbow was another symptom i should be reporting.

I just started keeping notes last week on my symptoms cause i know i will forget when the time comes to tell her.

 
Old 04-29-2012, 08:44 PM   #5
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Join Date: Apr 2012
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muffin862 HB User
Re: New member in Limboland

Quote:
Originally Posted by MSJayhawk View Post
Welcome.

Are you seeing an MS Specialist? Where are you in the Revised McDonald Criteria?

Keep a journal and record what is happening. Some things might seem inconsequential, but to an MS Specialist they can be like a flashing neon sign. Allow the doctor to review your journal with you. As you gain insight and experience, you will learn what is MS and what is not MS. Keeping a journal can also help you determine what your triggers are. For me, knowing my triggers is the one thing which empowers me.
I am just seeing a neurologist i don't think she is a MS specialist. I have no idea where i am in the revised McDonald criteria. She doesn't fully suspect MS yet.

I just started writing down the weird things that are happening now. Problem is its looking more like a book than a brief description. I got to work on that a bit. I have no idea what my triggers are yet. I know sun/bright light sets off my migraines but that's all i have managed to figure out so far.

 
Old 04-30-2012, 05:25 AM   #6
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Re: New member in Limboland

If MS is suspected or possible (excluding your known thyroid issues), then an MS Specialist might be better for you. Look online for the Revised McDonald Criteria and print a copy for yourself. It will make limbo land a bit less stressful. You can use it as a checklist or a roadmap.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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