no so good news

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no so good news

Postby REDHAIRANDTEMPER » Thu Apr 13, 2006 11:04 am

well have been on here the last couple of weeks reading everything but haven't had anything to report..just went to my neurologist this week..who first off is now sending me to a nerologist optomoligist...oh what fun to start all over with a new guy just isnt something i am excited about..but we were talk about that then he wanted to do a quick exam on me..okay no big deal..he checked my eyes and also my relfexs in both legs..now i havent had any reflexes or feeling in my right leg since august so that didn't surpirse me or him at all..but he had me stand up and he did a cold feeling test on my back and front...thats what i call it..ya know the one where they say can you feel the cold here or here..anyways after he did that he looked at me and asked if i had any problems with my left leg at all... i said not that i know of..he asked again if i was sure..i said yes''then of course i asked him why..he said well we haven't been able to see any lesions on your brain or cervical spine..however you are having memory loss so we know we are looking at some kind of disease that affects your brain...then he looked at me had me sit down and said he wanted me to have a thorasic mri cause since the last time i saw him was two months ago my relexs in my left leg has slowed down in response time by 30 percent..so now he is worried that if they dont find something soon that i might be in a wheelchair in a month or two...so of course after that i make the appointment for the mri which is on monday..but i have kids and a full time job and frankly i am scared to death right now...not sure what to make out of this...if ya all got some ideas or just someone who has been thru something similar i would really be thankful for anything you guys have to offer..thanks for reading this and i hope this doesn't sound like i am over reacting...

chris :(
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Postby Arron » Thu Apr 13, 2006 11:10 am

Hi Chris,

I'm sorry to hear of your puzzling time at the doctor. I can only imagine how you're feeling, but take a deep breath and try not to focus too much on this wheelchair comment. He is merely speculating and for some reason, doctors tend to make extreme comments! ;)

Trust that there are many, many treatment options available to you, traditional and non-traditional, once they figure out exactly what is affecting you.

With all of my support behind you,
-a
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby REDHAIRANDTEMPER » Thu Apr 13, 2006 1:53 pm

thanks i am trying to keep postive..doing my best here...but ya know after waiting these 8 months i have gotten to a point where i almost dont want to go through anymore testing..however if i dont i know this will get worse and i wont be any good for my kids...so i plow on and keep my head up and smile as much as possible....thaks thou for the support and this site to be able to talk and read stuff that keeps me going

chris
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Postby CureOrBust » Thu Apr 13, 2006 6:56 pm

I was diagnosed with peripheral neuropathy for 8 years (CIDP). I changed neuro's and when he saw that i had hyper-reflexes, he suspected I was misdiagnosed and sent me for an MRI, which showed up MS legions in my brain.

He said that if I had peripheral neuropathy, he would expect my reflexes to be slow or non existant. So going on that note, it would almost seem logical to me (not having medical training in any form) that you may have some peripheral nerve damage or i guess it may just indicate the plaques in your spine. I reaally dont know what i am talking about.

Has your neuro done any peripheral nerve conduction test?

Noone has explained clearly to me why we with MS would also not get myelin damage outside the CNS.

9 months ago i had a SEVERE relapse which another would of sent me into a wheelchair. Since then I have taken a shoot first and ask questions later approach to this condition, and I have made HUGE (but slow) steps forward

all the best.
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my pre-ms numb stuff

Postby jimmylegs » Thu Apr 13, 2006 7:22 pm

hi i used to get numb in one leg. then both, then phantom itch in arms.
i had very low b12 (under 75). i took oral b12 and it got better, but then i would stop again. most ppl get b12 from food sources but i did not. some ppl do not absorb b12 well. did ur doc test for parietal cell antibodies? or serum b12 levels? i would think they must have, prior to ordering mris, but just thought i'd mention it. i am still working to resolve my b12 probs - don't know where they end and where ms starts, but you might look into that if not already ruled out.

Curr Treat Options Neurol. 2002 May;4(3):197-201. Peripheral Neuropathy Due to Cobalamin Deficiency.
Saperstein DS, Barohn RJ.

*Department of Neurology, Wilford Hall Medical Center, 2200 Bergquist Drive, Suite 1, San Antonio, TX 78236-5300, USA. sapers@pol.net

Vitamin B12, or cobalamin (Cbl), deficiency can produce a number of neurologic complications, including myelopathy, peripheral neuropathy, optic neuropathy, and dementia. The myelopathy, combined systems disease, is probably the most well known manifestation, and is usually readily recognized. The frequency with which peripheral neuropathy is the sole presenting feature of Cbl deficiency is a point of controversy. The prevalence and the clinical and electrophysiologic features of Cbl deficiency peripheral neuropathy have not been well characterized. In addition, there is evidence that the commonly used assays of serum Cbl are not adequately sensitive. Testing the serum metabolites methylmalonic acid and homocysteine can increase the identification of Cbl deficient patients. Treatment with parenteral Cbl injections may not produce improvement of neurologic deficits, but might prevent worsening. In some patients with Cbl deficiency, oral Cbl may be an effective therapy.
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Postby carolew » Fri Apr 14, 2006 2:38 pm

Hang in there Chris, we are all behind you. Concentrate on the things you can do and not the fears that their words instill in you. Best of luck. Carole
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Postby REDHAIRANDTEMPER » Wed Apr 19, 2006 8:30 am

just wanted to tell you all thanks for all that you have written to me..it has helped me a great deal..i went on monday and had my MRI done for my lower back so just waiting on the results on that...had a little bit of a scary on tuesday morning..i woke up and had the pins and needle feeling in my left leg for about 5 mintues...wasnt the most exciting thing to wake up to let me tell you...hasn't happened since then so am trying not to think about it...but again thanks to everyone for your support...it helps so much...will let you guys know how everything is going when i get more information...

chris :D
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Postby Arron » Wed Apr 19, 2006 10:23 am

no problem Chris, glad we can be of some help.
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Postby REDHAIRANDTEMPER » Wed May 03, 2006 11:56 am

well everyone got my results back on the lumbar spine and guess what...thats right you geussed it nothing is there...i just dont know were to go from here..he wants me to go see a specialist for my eye problem..so i guess we will see..however the left leg with the deminished reflexes i have had tingling off and on for the last 5 days..doesn't stay very long but i do get it..very frustrating....so i have apointment with my neurologist tommorrow so we will see what he says about everything...thanks again for all your words of support..ah and the one good thing right now is that i am going to key west in june for a break...so thats a nice surprise....thanks again...everyone...
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Postby Arron » Wed May 03, 2006 4:14 pm

Hi Chris,

I'm so glad nothing was found on your spine (a notoriously difficult place to treat), even though I know it's frustrating not knowing what is wrong. Keep an eye towards that vacation and this will certainly get squared away in due time.

Best wishes for better health and thank you for keeping up updated!
-a
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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