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Old 05-29-2014, 01:26 PM #11
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Hi TXBatman,
Thank you for your help. I did notice the report said "hyperintensities"...as in plural and also questioned if that meant more than one lesion. My doctor specifically said "one spot" but she could have been referring to one "area" instead of one lesion. I have wondered all the same things as you mentioned. There wasn't any reference to the size of the "hyperintensities", is that common?

I have also thought about the location issue, since reading more about MS lesions, it does seem to be a very common location.

It's weird because yesterday I felt good and just couldn't imagine having MS, but today I feel like a bus hit me. I'm so fatigued, even after double the caffeine as normal day. My thigh is twitchy, my stupid eyelid is droopy, and my mood sucks. Sorry I shouldn't be whiny.

I really do appreciate all the information. I'll have to start looking closer for gluten free. I don't really eat much dairy. Maybe once or twice a week, do you eliminate it completely?

I was wondering about sx, do they last a long time in the same spot. I mean for me it like a few minutes my arms hurts then it stops, then a few minutes my thigh twitches then stops, then it my hand, then back to my thigh. The longest single issue lasted a few hours but then stops. Is that normal?

Thanks again


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Originally Posted by TXBatman View Post

First is that the word hyperintensities in the report is plural, which is a fancy word, but being plural, it means to me that you have more than one spot visible on the scan. Your doctor may have just been referring to the one around the ventircle horn, or may have misread the report. Or the radiologist may have misspoke and there is only one spot. But reading what was written indicates more than one...which becomes more important when you go read the McDonald Diagnostic Criteria for MS. The number of spots (or lesions as they are called) and their locations is very important for diagnostic purposes, which is why a neurologist will typically want to see the actual scans and not just the radiologists report.
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Old 05-29-2014, 01:40 PM #12
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This is my concern over the LP, why go through the possible pain and risk just to prove you have it. I feel like if I have MS, I have it, and it won't matter if one test says it or not. I'm not really afraid of needles or anything like that although I don't love the idea on them going into my spin but I've had two c-sections so it wouldn't be the first time. My issue is more with the risk.

My question is so what if the neuro confirms MS, then what happens? I've been wondering "IF" I have it, I haven't really looked into what happens next, lol.

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http://www.dizziness-and-balance.com...entral/pvm.htm

If that helps?


I had two LPs, the first neuro screwed up the first one, the second was negative for everything. I was offered a 3rd by the MS specialist, but after repeat mri's and other testing by him? He gave me a diagnosis of PPMS, and said that even if the 3rd LP would have been negative again? He wouldn't change his DX, there was enough other evidence for it, so I passed on LP #3.

If felt my symptoms were consistent with PPMS and so did he.
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Old 05-29-2014, 01:48 PM #13
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Great post TXTBatman!!!

Elle - The spondylosis and stenosis could definitely cause some numbness and tingling in your arms. You asked about common reasons for lesions. I don't know the statistics but I know that things like a virus or migraine could cause lesions. If you're looking for something mild as the cause. But, the only way you are going to know is by seeing a good neurologist. I agree that you may not need a LP. Like I mentioned, I was dx without an LP.

Hang in there!!! We are all here to help you through this.
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Old 05-30-2014, 09:05 AM #14
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My PCP set up the neuro appointment, it's next week on thursday, going to try to put it out of mind (lol) until then.

I'm a little nervous as I have to be outside most of the day today. I haven't spent much time outside since the last time that I had so much trouble walking. It's suppose to be in the mid 80's and humid. It's a work thing that will have me outside for at least 5-6 hours. I've gained weight since last summer so don't dare wear shorts, instead I'll be melting in my jeans. Hope! Hope all goes ok.
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Old 05-30-2014, 10:15 PM #15
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Ice water, ice packs, and wearing thin breathable clothing all help. Stay in the shade if you can. Enjoy your event.
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Old 05-31-2014, 12:17 AM #16
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It can take a lot to get diagnosed sometimes. Not everyone is lucky and gets dx with just an MRI. I had the MRI and it had all the bells and whistles for MS, but doc still sent me off for spinal. It came back negative. Fast forward 20yrs later, I did another spinal and it came back positive, nice little O-bands you have in your spinal fluid with MS. Thing Im getting at is sometimes you have to do what you have to do to get that dx. I had gone thru every test there is out there for my initial dx 20yrs prior, but because I hadn't kept up with any neurologist over the years, that new neuro put me thru all the tests again like I was new to it, just to make sure. I hated doing it, but I did it. Better to know than not. Good luck to you, and we're all here for you!
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Old 06-01-2014, 02:35 AM #17
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Quote:
Originally Posted by Elle114 View Post
This is my concern over the LP, why go through the possible pain and risk just to prove you have it. I feel like if I have MS, I have it, and it won't matter if one test says it or not. I'm not really afraid of needles or anything like that although I don't love the idea on them going into my spin but I've had two c-sections so it wouldn't be the first time. My issue is more with the risk.

My question is so what if the neuro confirms MS, then what happens? I've been wondering "IF" I have it, I haven't really looked into what happens next, lol.

I was fairly certain after some research that I did that I had PPMS, after being finally told that it now looks like my mystery illness looks like a neurological problem.

I had also looked at the recommended treatment, none? I could easily accept that, it seemed better than the limited options offered give the risks associated with them.

It will be a lot harder and more costly to get insurance after a diagnosis of MS? Some are willing to try anything? I like to see a 50/50 chance of help at least.
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Old 06-02-2014, 12:10 AM #18
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I come from the other view point of the spinal tap. Done by some one who knows what they are doing, U had no problems whatsoever. My first LP was when I was in a hypertensive crisis, had nothing to do with MS. My head was in such pain with the hypertension I wouldn't have known if they had cut my arm off. Next day we got up and traveled to Florida to Disney World.

My second one was for my MS. It was done in the radiology department of the hospital. He did it under the guidance of xray so he could know exactly where to put the needle. No mistakes when you do it that way. Next one was when I saw a MS specialist and he wanted to re-run tests. This time was done the same way but they had radiology students or maybe it was premed students, can't remember watching my bare behind!!!! Another piece of cake.

Everyone is different when it comes to any experience with the MS testing, treatments, symptoms, etc because we all have lesions in different places.
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Old 06-02-2014, 09:11 AM #19
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It turn out fine. We had rain at first that kept us indoors for a while and although I did get warm later into the night, I was never super hot or in direct sun. I felt ok. I was careful going up & down wet stairs after the rain, but no problems. Maybe I was just busy and distracted, but didn't seem to have any trouble. I was so happy!! and it was a very long night.

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Ice water, ice packs, and wearing thin breathable clothing all help. Stay in the shade if you can. Enjoy your event.
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