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  • Upzee_Dazee
    Hi! I am going to be 46 the end of the month. My symptoms began after my son was born in 2008. In 2010, I was finally sent to a neurologist after experiencing major loss of balance and strange burning sensations, especially at the top and back of my head.  The doctor I was referred to specialized in Migraines and tested for such. After nothing pointed to that, he had me go have a MRI of my brain which showed some lesions but the technician noted that they were not enough to diagnose MS.  I was then sent for a LP which showed normal. So, while scratching his head, the doctor sent me on my way with a diagnosis of Neuropathy. That sent me into a depression and made me feel like I was crazy!
    After continuing to experience different symptoms (i.e.. toes on right foot went numb and then 8 months later, the toes on my left, continued burning sensations head and in my muscles as well as feeling like I was about to have a full-body charlie horse but it never quite got to that point and extreme exhaustion that makes me feel like I have run a marathon in mud up to my neck while carrying a horse above me, arms straight up), I went to my new PCP and told him how I was feeling. He sent me to a neurologist whom I just saw for the 3rd time on Friday.  A week prior was my first visit in which he performed the usually nerve tests in the exam room. That following Wednesday, which was this past week, I went in for an MRI of my brain. This past Friday, April 20th, I was told that my white matter and changed significantly and that being said added to my symptoms I described would lead him to believe I had MS. 
    He then said he wanted me to go in for a LP (I'm thinking "YAY another one, how fun!"). This is what troubled me. He told me that if it came back negative, I did not have MS.  We all know that Google is a veritable information highway and I definitely hit the search button over and over again trying to gain information about MS prior to my appointment. Every symptom I had and typed in would lead me that direction before the doctor hit me with his diagnosis.  Well, I have read that 10 to 15% of people with MS have tested Negative for O-bands.  So now I'm wondering what to do.  I don't like the fact that he said that at all. Should I get another opinion? Go ahead with the LP? Refuse to get the LP and insist on getting an MRI on my spine first?  My brain is swimming.  Any ideas/opinions out there that might help?
  • beachgirl7
    My LP came back negative as well, and I was still diagnosed with MS. That diagnosis was based on a head and spine MRI. I know how frustrating it can be. Sorry!
  • pisces7
    What did your mri's show?
  • hippie
    hi hate  to hear what your going thru but nice to know im not alone hope that don't sound selfish but when u  tell someone what  your going thru and there not they really cant relate but anyway lm 43 ben going bak and forth since 2000 chasing my tale and running out of money had mri show spots but not enough what ever   had nerv test bone test lp said it wouldn't hurt that was bullcrap hurt like hell and couldn't walk for three days just had another mri no spots but stedliy getting wrose so I ask does the brain  heal the doc said yes my blood chart is off the scale my pain is to optic nerv 30% gone weekness and tingling bruning all the time cant walk 30ft without having musel spaz hav all the signs but not enough of any to call it ms if that maks anysents mean while my poor wife watchs me evaporate in to bed because it hurts to much to sit up any lenth of time I take about 30 pills a day I hav no appatite and cry for noreason sometimes  ther is one med that helps a lot with musel spaz  baclofen80ml aday did wonders for me and ive tried every thing I was having full body musel  spaz all the time looked like something out of a movie wore  me out for days my musels so sore couldn't even touch them  sometimes when I scatch my leg or arm it feels like im using a hammer I hav bad eye pain dubble vision and black and white days and eyelose sight for a coubble of days and I cant stand bright lite feels like sumone poking me in the eyes i don't hav sugar thank god it could be wrose    any way im gonna get off here for now hope u get somthig figerd out soon try not to stress to much if that's posable  PS SORRY about the spelling  
  • Tracey1
    My neurologist as scheduled a LP for  me as well.  However, I 'd had 6 MRI's and blood tests, in addition to my clinical symptoms, he felt secure in diagnosing me with MS.  So i asked if it was absolutely necessary for the LP, as I reminded him that I had spinal mengitis as a 10 yo child and it was quite traumitizing!  He smiled and said it's come along way since back then, but NO, right now it wasn't necessary to have the LP.  He said that i could be having a "good day" when the LP is done and the results would yield no information.  He is one of the top 10 neurologists in Dallas, very brainy and smart.  Although, one day he said he may need to obtain one. Ugh....
  • Dixzeland

    Hi. I'm in need of a great neuro in Dallas.  Can you tell me the person you see?  Ty

  • Michellle
    Hi from Michelle-The MS Society has posted somewhere, (short term memory) that IF YOU HAVE 3 OF THESE THINGS, MRI showing lesion, white matter, tremor, falling episodes and many more- I will try to find the REPUTABLE SOURCE, in other words this was approved by the American Medical Association. YOU DO NOT HAVE TO HAVE A SPINAL TAP. I had 2 top neurologists diagnose me with MS and 3 others after the diagnosis (and scratching their head)
    I loved the way you put it, how true. These 3 others said they can't see it and I should have a spinal tap. As I have learned and wrote to someone else, I was hospitalized for depression because I could not get a diagnosis. THE BEST ADVICE was to go to a teaching hospital, such as University of Penn., Jefferson Hospital any hospital with an MS building and top neurologists. But it has to be part of the hospital not a separate practice. I will try to find the source of MS diagnosis without a spinal tap.
  • joynerthedad
    Hi! I am going to be 46 the end of the month. My symptoms began after my son was born in 2008. In 2010, I was finally sent to a neurologist after experiencing major loss of balance and strange burning sensations, especially at the top and back of my head.  The doctor I was referred to specialized in Migraines and tested for such. After nothing pointed to that, he had me go have a MRI of my brain which showed some lesions but the technician noted that they were not enough to diagnose MS.  I was then sent for a LP which showed normal. So, while scratching his head, the doctor sent me on my way with a diagnosis of Neuropathy. That sent me into a depression and made me feel like I was crazy!
    After continuing to experience different symptoms (i.e.. toes on right foot went numb and then 8 months later, the toes on my left, continued burning sensations head and in my muscles as well as feeling like I was about to have a full-body charlie horse but it never quite got to that point and extreme exhaustion that makes me feel like I have run a marathon in mud up to my neck while carrying a horse above me, arms straight up), I went to my new PCP and told him how I was feeling. He sent me to a neurologist whom I just saw for the 3rd time on Friday.  A week prior was my first visit in which he performed the usually nerve tests in the exam room. That following Wednesday, which was this past week, I went in for an MRI of my brain. This past Friday, April 20th, I was told that my white matter and changed significantly and that being said added to my symptoms I described would lead him to believe I had MS. 
    He then said he wanted me to go in for a LP (I'm thinking "YAY another one, how fun!"). This is what troubled me. He told me that if it came back negative, I did not have MS.  We all know that Google is a veritable information highway and I definitely hit the search button over and over again trying to gain information about MS prior to my appointment. Every symptom I had and typed in would lead me that direction before the doctor hit me with his diagnosis.  Well, I have read that 10 to 15% of people with MS have tested Negative for O-bands.  So now I'm wondering what to do.  I don't like the fact that he said that at all. Should I get another opinion? Go ahead with the LP? Refuse to get the LP and insist on getting an MRI on my spine first?  My brain is swimming.  Any ideas/opinions out there that might help?
    Good morning.  Oh my.  I would go for another LP.  I know that sounds horrible, the thought of it makes me cringe as well.  ( I have had a couple, so I know they are not pleasant.)  The whole thing, from my limited understanding, is the LP provides confirmation to the diagnosis.  I know that sounds strange, but way back when, there was some controversy about diagnosing people with MS.  These days they have specific criteria for the diagnosis.  My first epidsode showed the lesion but negative on LP.  With the second one the LP came back positive and I was diagnosed.  Honestly, I would do the C-Spine and the LP.

    I just feel there is a need to look for lesions on teh C-Spine in possible MS patients (that is where mine started).

    The LP will give the doctors the confirmation they need to begin treatment.
    I hope that helps - do both.
  • tcarr42868574
    MS is usually diagnosed with an MRI and clinical symptoms, I had an LP before i was diagnosed,it ended up being uneeded. The LP I had was negative,but the MRI I had showed a lot of lesions. My MS Specialist, said the diagnosis came from the MRI.
     
  • itsKimmie
    Upsee Dazee, no you're not crazy!   I did much as you did, googling every symptom, hunting down how to get diagnosed... . because I too was sure I had MS, after reading so much about it. So many different kinds of symptoms.  I am lucky to have been diagnosed very early and probably compared to many, very quickly (within a year).  My gp was not much help after I was instructed to go to the ER if I had trouble swallowing/coughing, but the RT doc  told me my  CT head scan was clear, so i didn't have a tumour or a stroke.  I was also presenting symptoms of 'drunkeness' as i call it.... loss of balance, slurred speech, very tired.  I didn't 'feel' drunk, but I could hear myself talking with a pronounced slur.  So, my GP said, oh, you may have 'conversion disorder' (doctorspeak for it's all in your head), or an infection, or maybe something like MS....By the time I got in to see my GP, my symptoms had almost all gone away, except the swallowing problem.  A few months later, another relapse, only this time entire left side of my body was numb feeling.   Back to ER because  stroke is suspected... and nope... no stroke..... ER doc says, have you considered MS?   Back to GP.... symptoms are almost gone away again.... he sort of reluctantly gives me a referrel for a neuro.   Neuro scheduled MRI, and blood tests ..... results: no infections, mri shows lesions and some old lesions/scar tissue. But he wants to do LP to confirm diagnosis.   I think the medical criteria usually requires 2 different tests to dx MS.  And both MRI and LP could come back negative... Lesions have to be big enough to show up on MRI and sometimes will heal up, i was told.  and the LP could come back neg for O bands.  Unfortunately this can be why it takes a long time to get dx, as I understand.   But don't have too high expectations of medication... I just started my Copaxone 1 month ago and was told multiple times that i may not experience any relief from current symptoms.  I may, but may not.  Purpose of the Rx is to slow down progression, not to actively make your symptoms go away....It's not like taking cough syrup for a cough.  I don't know if this helps or makes you feel worse :(    I mean for it to be helpful.... 
  • wheeliesuk
    Hi 'ItsKimmie'! Thanks for your post, I find it comforting that someone else has gone through what I'm going through now. I've had MRI resonate (?) - no lesions, LP - negative. But, my symptoms include Optic Neuritis, numbness in both legs (I use a wheelchair in and out the house), tingling in both hands (periodic numbness in both hands), pain in lower back and legs, tiredness, sleep disruption, chokes easily on food or liquids, speech difficulties, brain fog at times and difficulty with memory. Am quite pleased with myself remembering this list - oh, forgot burning sensation on my shoulders and what I call 'nodding dog syndrome' - my head shakes/nods. Initially I was diagnosed with M.S., then M.E. with Fibromyalgia. But now, after 6 years of me playing International Parabadminton Championships, being the UK No. 1 Ladies Singles wheelchair player for 3 seasons, plus International Bronze medalist Mixed Doubles 2014, I've been diagnosed with Fibromyalgia and kicked out at The Spanish International last Sept '14 and out of the England Squad. I'm gutted. I'm not disabled enough!!!!!!!!!! Can someone have all those symptoms and have no positive medical tests? Please, I need help, I live in the UK. Thank you :-) xxxx
  • ShellP
    I had an LP and it came back negative for O bands. I continued to have issues pop up and was diagnosed by with MS by another physician.

    IMO, I'd skip the LP and just go with MRI's. You've had one already and another one is pointless. Also, A negative LP does not mean you do not have MS.
  • withlove03
    Hi I have been dx since 2005 and I completely understand about feeling crazy.  They also wanted to LP on me, but I would not let them.  I was told most of the time the test comes back inconclusive.  So I would never let them do one.  I was sent to USF here in Florida and saw the top man Dr. Dun (now retired) and he looked at my MRI and said it was MS.  He said by were the lessions ere in the brain is how he could make the dx for sure.
    At the time I only really was getting bad headaches and heaviness my arms.  Today I get the burning in my hands and feet.  I also have pain in my calf and hip...well some days all over.  My biggest problem is being tired.  Well good luck with the LP, I pray you dont have to get another one.
  • Maura_G
    I refused it.  I would go with the MRI of the spine.
  • Upzee_Dazee
    Thank you Joyner!  The doc originally told me we would do the MRI of the brain first and then of the spine if nothing showed up on the brain scan. Now he just wants to do the LP. I'm still concerned that he is set on not DX'g me if it comes back normal just because it's not a fool-proof diagnostic tool. I just want to start on meds and get to feeling better is all. I feel this has been drug out for 4 years already ya know?  And I have a precious 4 year-old little boy who is very active and a 9 year-old little girl who needs me at 100%. I really appreciate your advice and will definitely take it to heart. That's why I posted on here. :) 
  • kc41101
    Hi There,
                    Just wanted to wish you well. I had the luck of having enough lesions and outward signs showing by the time I was dragged into the ER where they dx'd me (I hadn't seen a doctor in a few years) to not have to get an LP for validation so I can only cringe from hearing about one. All I can say is once you find out for sure, there is relief in knowing which eases stress on yourself as well as your kids (mine are girls 3 and 6).
  • Angela131
    Hello, I received my diagnosis based on my brain MRI (my spine was clear) and my LP.  My LP did not have any O bands but all of my protein levels were high.  My brain MRI did have lesions on the corpus callosum which I guess is seen in MS.  I had been having symptoms for about 3 years off and on not knowing it was related to MS.  I don't know if this helps any, but I hope it does.
  • Upzee_Dazee
    I really appreciate everyone's responses and suggestions. I am absorbing it all and taking things into consideration as I read them.  I called my Neuro yesterday to see about getting another consultation before deciding to do the LP and low and behold his office called with an appt. for tomorrow (Thursday, April 26) to do the LP.  I told his nurse that I definitely wanted to speak with him first. I just want to pick his brain as to why he thinks this is really necessary.  I DO know however that there are a few things going on right now other than the lesions. I saw my psych. for my reg. med eval. on Monday and he got a copy of the MRI results and read them. He said that I have a fluid filled cyst behind my sinuses in my brain but it is not filled to capacity so it's not pushing on anything at this time. (mri reads: Right maxillary mucus retention cyst nearly completely filling but not expanding the right maxillary sinus). He also said I had a something going on behind my left ear that looks like an infection (mri reads: There is a minimal patchy opacification of a few of the left mastoid air cells.) And it says I also show signs of vasculitus. (mri reads: Shows suggestion of periaqueductal increased T2 signal intensity. Finding may reflect changes related to small vessel disease.) It continues to say "The periaqueductal signal abnormality would also raise the concern for changes related to a demyelinating process like Multiple Sclerosis."  It ends by saying "Further clinical correlation is needed".
    So I guess that's where the LP comes in *sigh*. My psch said i could have some sort of inflammation/infection causing a lot of this.
    I guess, with all said and done, I'm going through with the LP and getting it behind me. The concern I have about him saying "if it comes back normal, you do not have MS" is still an issue that I wlll bring up with him in our conversation I will have with him today hopefully.
    My follow up appt. for results and Dx is next Friday, May 4th.  I will keep you guys posted! (my birthday is April 30 and I will be 46!) What a birthday present huh? LOL!
    Keep me in your prayers you guys!

    Paula
  • Upzee_Dazee
    Thanks for the response Kimmie. It doesn't make me feel worse.  I'm actually more relaxed right now just because I know I am being allowed to move forward and start getting some answers. My psych. doc prescribed some Ritalin yesterday. I took one then and 2 today. I seemed to help counteract my severe exhaustion I've been having.
    You mentioned the swallowing problem which I have heard about but coughing? WOW is that a symptom because I have been coughing like crazy but I have no drainage from allergies or a cold or anything. It was blowing my mind. That in itself makes me feel better! It's a little after 10pm and I have to be at the hospital at 6:30 for the dreaded LP. *sigh*  Guess I had better get to bed. Thanks again to everyone for making not feel alone in all of this!
  • Rhiannon
    I hope everything works out.  If the LP comes back negative you should ask for an MRI to be done of your spine.  I don't know if the LP is a cheaper procedure and that is why they do it for insurance reasons, instead of an MRI of the spine.  I was very lucky when I was diagnosed that my neurologist order an MRI of my brain and spine, both of which showed several lesions.  Be careful with the lumbar puncture.  I have a friend that was also diagnosed with MS and they did not close up the lumbar puncture properly.  She was in the worst pain of her life and it took them several days to fix it.  Best of Luck!