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#1 | |||
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Magnate
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It started as a small spot on my Right calf. That was back in August it then spread up to my belly button and now it is just under my breasts front to back and all the way to my foot on the right side.Then last Thursday (my birthday) I was shaving my legs when I realized i couldn't feel the razor on my skin from the knee down on my left leg.
They found 4 lesions on the spinal MRI and yesterday was to see if there are any in my brain. I have the DX from two different Neuros but I have to finish out all of the other testing just in case but they are both willing to bet money it's MS. I have never been in so much pain and so exhausted as I have in the last week. the thing I am concerned about is the Grave's disease Dx from 99 and the Bipolar dx from 2004. I don't know how all of these are related, but they are all kicking my butt right now. And the 45 mile commute to work when you can't really feel the pedals is not a pleasant experience. Especially with my 4 yr old in the car. Hopefully we will get something accomplished next week. He did say something about steroids.... anybody had any luck with these? he says it would be a last resort kind of thing. Quote:
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#2 | |||
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Grand Magnate
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Ah yes, the "rule out the mimics" tests. I felt like a lab rat when that was done, especially with all the bloodwork they had to do.
![]() I agree with you about the VEPs. Wasn't fun for me either, and made my tummy do flip flops. Some MRI places have the ability to let you bring CDs or at least pipe through radio stations to cover some of the noise of the machine. They have to cover me with a blanket before they send me into the MRI, because it gets cold for me too. I personally have never been on steroids, so can't help you with those questions. ![]()
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Strength comes in all types of packages, even those you don't expect Dx'd MS 2007, Fibro 2009 |
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#3 | |||
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Member
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Legzz - the MRI makes me cold EVERY time! Ask for warm blankets, they have them. The poking and prodding wears me out too. Hang in there...we have all been there.
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Brenda . Dx with RRMS 2/05 Avonex 3/05 LDN 11/08 |
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#4 | |||
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In Remembrance
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Ah yes, I had the pleasure of the DX process, twice....once in 1976, which included a myleogram and many blood tests. I was DX and then I had a lovely 17yr remission, of sorts. Then in 1993, I had a whopper exacerbation and went to the hospital, where I experienced all the new fangled tests....MRI...etc, etc, etc...whoopee!!
![]() All that was available in 1976 was Prednizone, so I hd a bit of that and it may have helped, since I went into remission, but I may have anyway, who knows. In 1995, or thereabouts, I started Avonex and stayed on it for 7 horrible months of awful side effects.....then onto Copaxone for 10 months, no side effects but I progressed from RRMS to SPMS.. ![]() Then I discovered LDN in April 2003 and the rest is history.. ![]() I have advanced in years, however, so I am a little slower and less agile, but still have that overall feeling of wellness that LDN has always given me. So sorry for all the agony of testing and your MS pain.. ![]() Good luck and good wishes.. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | CayoKay (11-19-2008), lady_express_44 (11-11-2008) |
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#5 | |||
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Grand Magnate
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Quote:
There are very few conditions that present with spinal lesions, and it's highly likely they are on the right track with a MS dx. If they can find lesions in your brain too, it will be a slam-dunk . . . but for now they are looking for dissemination in space (neurological damage in two areas of the CNS) to confirm MS. They would be trying to take Devic's disease off the table too, which is like MS but mostly only affects the spinal and optical nerves. Spinal lesion attacks are wicked, especially if they come on very quickly. Both sensory and motory nerves can be affected, and how high up you get numb will determine which spinal cord lesion, i.e. a C spine one, or a T spine one is flaring right now. So for instance, in my first attack it was my T6 (I think) lesion, and the numbness stopped mid-way through my breast on one side, and just above my breast on the other. When I had my C spine attack(s) though, the numbness included my hands, tips of my ears, vocal cords, etc. I have always heard, and my neuros and doctors have fully endorsed, that "sensory" attacks would not be treated with steroids. Although these kind of attacks are relatively rare, most people I've talked to have chosen to try steriods because they "hope" they will help . . . but I have never seen the use of them change the outcome or time to recovery. For that reason, I didn't take them on the 3 occasions I've had these attacks. JoeMac went through a very acute TM attack this past summer, and we walked him through it on a thread here. Please be advised that if you are a person who would rather just face things as they come, this isn't going to be a thread you will want to read: http://neurotalk.psychcentral.com/sh...verse+myelitis This spinal lesion attack you are in is presenting differently though, in that this has happened over several months. The only time that happened to me was when I had a tooth infection that I ignored FAR too long, so I will reiterate that you should be fully inspecting your body for any sign of inflammation or infection of any sort right now. ![]() Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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#6 | |||
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Grand Magnate
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Quote:
However, when you are at the point of 4 objective lesions in your spine, and a classic presentation of spinal lesion activity, they do not doubt you. ![]() Bipolar can be as a result of MS (over time), and/or some people present first with bipolar and eventually the REAL MonSter (MS) makes itself blatantly obvious. They are quite used to running into this. ![]() I don't know anything about Grave's disease though . . . Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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#7 | |||
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Magnate
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Neither do I, but I met a man this last winter in the hospital ER waiting room who shared his diagnosis story, involving Grave's disease. His sounded like a complete nightmare getting a diagnosis compared with MS.
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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#8 | |||
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Junior Member
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How ya doin kiddo? As for the testing.... I've been reading the replies you have here and it seems like most are indicating at some point all the poking and prodding stops. Hmmm....
I'm seen at the local V.A.. I was diagnosed Jan 2 of 96 and they have yet to stop doing that. It's like some fetish or something. Some times the numb areas progress, but then most times they never change, and even if they do, so? As for the MRI, I finally stepped in and took control of when they do those. They cost about $1500 a pop. That, for me, is payed by the taxpayer, you and I don't like wasting your hard earned money. I figure the first one showed leisions confirming MS. Any new ones are going to show the same thing, so why do them every 6 months? I figure every couple of years is good enough, unless there is a major change or something like that. Good call on the heated blankets, I forgot about those. I didn't know about the CD thing and shall bring one the next time I have to go in. Bottom line on the tests.... They are now a part of your life, so might as well get used to them. MS is progressive as we all know. The docs are just trying to monitor the progression as best they can. Physical testing, and listening to what and how you say what you do, are the only ways they will know. MSDave
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"The Cognative mind wonders": 'Did you EVER stop to THINK....... and then FORGET to start again???' . WARNING: The Surgeon General has determined that living causes death. This finding will be stamped on all new-born baby bottoms from now on. |
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"Thanks for this!" says: | legzzalot (11-20-2008) |
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#9 | |||
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Grand Magnate
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i'm sorry you're having to go thru all this leggz.
but at least your drs are looking for answers and to find the best tx for you. please hang in there. it sounds like you've had a lot of test already done so hopefully you will be done soon and hearing about results instead.
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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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#10 | |||
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Magnate
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So we did the spinal tap yesterday. It wasn't was bad as I expected it to be but the needle kept hitting a nerve that went to my hip that felt like lightening shooting my right side. Oddly enough it hurts today between my shoulderblades, you know about 2 ft above where the puncture is.
Stiff as usual. Feels like my joints just don't want to move. We start the steroids tomorrow afternoon. They better work. The left side decided the right side was having way too much fun so now both legs are numb, and my stomach, and my back, and my left arm, but it's just the skin that is numb. I can feel pressure, well, except for my feet.. which makes driving beyond frustrating. I'm told this attack will go away I am waiting ..... This "episode" has been kicking my ***** since August, seems the harder I fight it the harder it hits back. |
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