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Old 08-03-2005, 12:42 PM   #1
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deena_sully HB User
Dont' want to go through this again....sigh

Hello all. I think I've read every post-you all are so kind and knowledgable. Must be a great side effect!

I went to my primary care doc last week because my left leg was quite painful in the evening. It felt as I remember when I overdid waterskiing when I was young-not a pain like a wound but a pain like overuse. It had been going on for several weeks but was getting worse and just bugged me.

Upon his exam he found that the leg was weaker than the other leg and he referred me to a neuro.

Unfortunately this is the third time I've been referred to a neuro. I've had a weakness on my left side before, in my right arm before, pins and needles that has gone away, many, many bladder control problems over the years, an episode of vertigo, and other fun things. The two previous neuros (whom I saw about 15 years ago and about 7 years ago) both said on physical exam that I probably had MS but both also told me after MRI that I didn't have it because my MRI was normal.

I don't want to see a neuro again. I'm tired of being told that stress or anxiety or whatever causes my symptoms. I don't mind being a neurotic nut case as they seem to think but I really would like some symptomatic relief and avoid the high charges of another round of mri's and neurologists.

Thanks for reading this. Any advice is greatly appreciated!

(PS I've had a spinal tap but that went wrong somehow and I will not have another one...ever.)

 
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Old 08-03-2005, 01:12 PM   #2
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KelliD HB User
Re: Dont' want to go through this again....sigh

Deena....I am so, so sorry to hear about the hassles you have had to deal with. Can I ask a question? When did you last have a spinal tap?

My honest advice..after visiting NUMEROUS doctors enroute to an eventual diagnosis myself..is to revisit a neurologist you like, or find a new one..explain what you've been through - type it out even! And *tell* him you want the complete battery of tests for MS so you can put this to rest once and for all. If it is MS, you can begin treatment. If it is not, you are free from its shadow and can pursue another path. PEACE OF MIND IS EVERYTHING (at least it is to ME! LOL!)

In addition to the many issues I had been experiencing, my diagnosis was based on an extensive MRI series...bloodwork...evoked potentials..and a lumbar puncture.

PLEASE...let me share with you about the lumbar puncture....

My sister also has MS...dx'd 16 or so years ago. Back then, they had her lie curled in the fetal position while a nurse lay atop her to keep her still as the doctor did the spinal tap. She tells me it was excruciating. So you can imagine my intense fear when my turn came.

My neuro ordered an LP with fluoroscopy...which basically meant the doctor who did the tap used an xray machine to guide the needle. He numbed the surface of my skin..then gave me a small injection to further numb where he would puncture...then VERY QUICKLY AND EXPERTLY did the puncture. The whole process took maybe 7 minutes from actual start to finish? I PROMISE YOU: It felt like no more than a quick, pesky little "sting." I only had to lie still for one hour and was then permitted to move as needed. The only side effect from the LP was some lingering tenderness. PLUS...my neuro said an LP for MS need NEVER be repeated. They track you afterward through MRI's.

Please don't be afraid (easier said than done -I know)and please get aggresive about a diagnosis so you can start moving forward and enjoying your life!

 
Old 08-09-2005, 01:03 PM   #3
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deena_sully HB User
Re: Dont' want to go through this again....sigh

Thanks for the info about the lp. Mine was about 15 years ago and the doc hit something in my spine. I saw stars! It was absolutely the worst pain i have ever been in. Fortunately i blacked out after it was over. I am SURE no one here would go through something like that. Mine was done overseas (in Europe at a military base) - however, knowing that doesn't make it any easier to contemplate getting it done again.

I just called my primary care doc with symptoms of my face feeling really tight on one side. This has been going on for a few days. The nurse told me I need to go to to the emergency room. I really don't want to do that so I'm going to wait to see the neuro next week.

Like I said, I'm okay with these symptoms being all in my head and I don't even need a diagnosis or a label-i just want symptom relief!

 
Old 08-09-2005, 02:04 PM   #4
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kchs1 HB User
Re: Dont' want to go through this again....sigh

Deena, I'm Really Sorry To Hear That You're Having Such A Rough Time. Right Now So Am I.

But I Really Think, Like Kelly Said You Need To Do Whatever It Takes So That U Get A Dx And Know What's Going On In Your Body. It Sounds Like Ms To Me, But I'm No Neuro. But I Can Relate To The Symptoms You've Expressed.

Hang In There Sweetie I Know It's Tough. I Pray That You Find A Break. I'm Praying For One Too. Lol!

BLESSINGS!

MRS. KCH-S
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Old 08-10-2005, 04:17 AM   #5
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deena_sully HB User
Re: Dont' want to go through this again....sigh

Well, the ER was not the nightmare I thought it was going to be. The ER doc talked with me, listened closely and said "I think you have classic ms symptoms". He called the neuro who agreed to see me right away instead of waiting for so long AND....blessed relief---he went ahead and treated my face pain without waiting for any confirmation! This guy was great! He didn't make me give blood or go through medical stuff that we both knew wasn't necessary as has happened in the past. Wow-what a nice surprise.

Neuro next and I'm much more optimistic.

 
Old 08-10-2005, 04:24 AM   #6
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kchs1 HB User
Re: Dont' want to go through this again....sigh

I'M HAPPY TO HEAR THAT YOU GOT THROUGH WITHOUT ANY HEADACHES SWEETIE. I KNOW PERSONALLY HOW NIGHTMAREISH(SP) ERs ARE!!!!!!!

ALL THE BEST!!
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Old 08-10-2005, 06:12 AM   #7
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KelliD HB User
Re: Dont' want to go through this again....sigh

Honestly...I am SO very glad for you that things seem to be looking up and you're getting help! Do you have any idea what a huge blessing it is to be able to get in to see the neuro so quickly!? Keep us posted...we're pulling for you!!

 
Old 08-10-2005, 06:28 AM   #8
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beachlover247 HB User
Re: Dont' want to go through this again....sigh

Hi Deena,

So glad to hear that everything went well in er. I hate that place, but it can sure be a relief to get relief! Let us know what happens with the neuro. We'll be here! Sue

 
Old 08-10-2005, 03:27 PM   #9
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deena_sully HB User
Re: Dont' want to go through this again....sigh

Well, I guess it wasn't as simple as it seemed. The doctor's scheduler called back and said it just wasn't possible to get me in to the neuro this week. So, i'm back to my original appointment next week. Not bad considering what others have gone through. Maybe they simply didn't want to reward my "bad behavior" of going to the emergency room!

 
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