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#1 | |||
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In Remembrance
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Hi Synnove
![]() a MS DX, for some, is not an easy or quick journey. The fact that demyelinating lesions were found and confirmed on your brain MRI, is certainly an indication of MS, but not total proof. Have you seen a Neuro, who specializes in MS? This may be the thing to do. Get yourself to a MS specialist/clinic. Maybe then you can get your answer? Keep us informed as to how you are doing and hang in here. ![]()
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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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#2 | ||
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Member
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yes, Sally, my local neurologist sent me to a MS spcialist neurologist, some time ago. The both of them, agreed to reevaluate me every 6 months to a year or so. with repeat MRI of brain. I have had about 3, and no new lesions. I had beleaved that they had ruled out MS, so I did not think much about that for about a year. So many other issues has been going on in my neurological state. cerebral aneurysm, and vasculitis and severe neuropathy.
But they can not find the real reason for the neuropathy, so they call it ideopatic. Not until now, I am bringing the subject of MS again, due to the fact I hav some night episodes, they think might be some kind of seizures, I am going to hav videomonitored EEG next week. I have migrane, and all this together, I have tought perhaps it is MS. I actually saw this MS doctor twice. So I will wait to see, what the the spinal tap result is. Perhaps we can have it ruled out. Thank you all for the time and effort of reading my post. |
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#3 | |||
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Member
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Hi Synnove
I remember you from the aneurysm forum, although that one isn't very active. I had an unruptured aneurysm clipped in 2004, but I was diagnosed with relapsing-remitting MS in 2001. My aneurysm was an incidental finding - thank goodness, because it was just about to blow. Sorry that you are going through all of this, and I hope you get some answers soon. Hugs
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Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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#4 | |||
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Elder
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first of all welcome to this site!
I have severe spasticity as well as neuropathic pain. I also experience that vibrating feeling occasionally in different parts of my body. Feels like a tuning fork to me. It's all part of my wonderful MS journey. I was on gabapentin (neurontin) for the neuropathic pain, but didn't like the side effects. I have permanent numbness in toes and fingertips, and occasionally it spreads but then retreats back to the permanent sites. Balance issues, cog fog, bladder/bowel issues, pain, it's all quite a ride. the lumbar puncture will not always give you additional info...mine didn't. And make sure you drink lots of liquids before your procedure. Plan to lie flat the rest of the day, and drink hi caffeinated drinks afterwards, like Monster. Helps avoid the dreaded headache. Only get up for bathroom break and meals. Keep us informed-and keep a symptom journal with dates of onset, as well as questions for your docs. Good luck...hope you get an answer...many of us were given different diagnoses before it was nailed down as MS. It's a disease of excluding others before they decide on MS... ![]()
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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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#5 | ||
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Member
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First of all, I do not know if I have MS
to Lynn: Thanks for your kind post. Yes, that was good luck for you that the aneurysm was notices incidentally, and therfor repaired before it ruptured. I did not know you also had MS. I feel a special conection to you. Not so many poeople have cerebral aneurysm and live to talk about it. I guess I just have that feeling due to the fact that I am a nurse, and see patients with ruptures and in ICU etc. My aneurysm was noticed incidental too, due to investigation of visual disturbance and migrane headache. But any way, it seems like us people with neurological problems, have many issues. I have had this terrible neuropathy getting worse over a year, last few months terrible. Doctors have not quite pointed out the reason/cause of the polyneuropathy with parasthesia and autonomic neuropathy. They say it could be the vasculitis I have. But the medicine, is not helping. To Debbie D: Thank you so much for your kind reply. Yes, what is troubling me a lot, is this vibrating feeling. This is the symptom so many doctors, mostly neurologists, have not understood when I explain. IS THERE ANOTER WAY OF explaining this to the doctors?? Even MS doctors, 2 off them, I have explained. Is this so unusual? To me it is scary, and getting more so due to the fact that doctors do not aknowlege it. So now, I think the spinal tap will hopefully tell us more. Thanks for your time |
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#6 | |||
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Elder
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There are MANY of us who've experienced this symptom. All I can suggest is to google it or if there is a search engine on this website use it (I am cognitively challenged & can't figure out how to utilize features of site)
![]() DO NOT GIVE UP. No matter if it's MS or some other disorder, list your symptoms in a journal, check in to your body occasionally, and LIVE YOUR LIFE. Try your best to be your own advocate in the doc's office. Be an informed healthcare consumer. When I was searching for a dx, I was obsessed with finding out what was going on. There is often something going on...maybe MS, maybe not. Keep track of what's going on...then live as if it's your last day, with bliss and gratitude. I know that when we are feeling so bad it's difficult. But all of us can live life to it's fullest, even when we can't move and can only look around. Others who've been through He77 have taught me that we can make the best of even the worst situations, can learn something from it. I am not lecturing...just kind of mirror-thinking. We all learn even as we post. There are many in this world who are worse off than we, yet they make the best of what hand they're dealt. The challenge is to accept the hand and play it to the best of our ability. Sometimes we are successful, and sometimes we aren't. Doctors are well trained in their professions, but we know our bodies best and need to assert with physicians our input. Keep us up to date as to what is going on and what the docs say...we all ahve experience on our side, which has taught me much here and given me such support in so many ways.
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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon Last edited by Debbie D; 10-28-2013 at 07:41 PM. Reason: edited for clarity |
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#7 | |||
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In Remembrance
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Great post Debbie.
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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: | Debbie D (10-31-2013) |
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