lilc
06-13-2006, 10:11 PM
So all my evoked potentials are still normal. The records from my LP last August are confusing, one sheet says no oligoclonal bands, another says greater than 5 oligoclonal bands. My brain lesions are quite small, even though there were several.
I've brought this up on this board before, and I'm pretty sure I discussed it with my first neuro. 20+ years ago I did some heavy cocaine and meth use for a period of several months. New neuro thinks that may be causing my sx (though I got the impression he hasn't had much experience with drug users - he kept asking how cocaine makes you feel).
I couldn't sit down and cry when I left the appt like I wanted to, had to go back to work. Don't think I can deal with another LP within a year of the first. Don't want to do the VEP and P300, either. At least he didn't pull my Copax rx.
I haven't enjoyed rollercoasters in MANY, MANY years, not interested in getting back on this particular ride again...Just venting, I guess.
How ironic. Just went in the fridge and realized I forgot to do my shot today.
I've brought this up on this board before, and I'm pretty sure I discussed it with my first neuro. 20+ years ago I did some heavy cocaine and meth use for a period of several months. New neuro thinks that may be causing my sx (though I got the impression he hasn't had much experience with drug users - he kept asking how cocaine makes you feel).
I couldn't sit down and cry when I left the appt like I wanted to, had to go back to work. Don't think I can deal with another LP within a year of the first. Don't want to do the VEP and P300, either. At least he didn't pull my Copax rx.
I haven't enjoyed rollercoasters in MANY, MANY years, not interested in getting back on this particular ride again...Just venting, I guess.
How ironic. Just went in the fridge and realized I forgot to do my shot today.
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StephanieAnne
06-13-2006, 10:37 PM
Hi lilc
Oh dear, so how come you went to a new neuro? and does he have copies of all your records from the old neuro? I am sure he does, I'm thinking that you are a pretty efficient person :cool: so how does he explain the L'hermittes? and the balance problems? and the exhaustion?
The sins of our youth, that was me too, just a few recreational drugs, and I often wonder if that contributes to my MS, amd maybe it contributes to yours along with a bunch of other stuff, like you had mono? and what about artitifcial sweetners, use any of them? and then there are enviromental concerns, your MS like mine and like alot of other people maybe is brought on by years of stuff we ingested like food wise who knows what is in processed foods, and did they ever spray for mosquitoes in your neighborhood when you were a kid? [maybe that is just a NYS thing} we chased the trucks on our bikes, :eek: what did we know back then, what did anyone know back then :confused:
How about telling your new neuro, that maybe it's not MS, but things seem to be moving quite nice now, and the drugs must be working, so lets let the sleeping dog lay? I would not want to go thru all those tests again, explain all that to him. Is he a young DR? I sometimes think the young dr's want to cure the world of all it's ills :rolleyes:
Sleep on this new info, let your brain think about it and see how you feel in the AM. Remember YOU ARE IN CHARGE!!!!! and you may vent here anytime you want! :bouncing:
Oh dear, so how come you went to a new neuro? and does he have copies of all your records from the old neuro? I am sure he does, I'm thinking that you are a pretty efficient person :cool: so how does he explain the L'hermittes? and the balance problems? and the exhaustion?
The sins of our youth, that was me too, just a few recreational drugs, and I often wonder if that contributes to my MS, amd maybe it contributes to yours along with a bunch of other stuff, like you had mono? and what about artitifcial sweetners, use any of them? and then there are enviromental concerns, your MS like mine and like alot of other people maybe is brought on by years of stuff we ingested like food wise who knows what is in processed foods, and did they ever spray for mosquitoes in your neighborhood when you were a kid? [maybe that is just a NYS thing} we chased the trucks on our bikes, :eek: what did we know back then, what did anyone know back then :confused:
How about telling your new neuro, that maybe it's not MS, but things seem to be moving quite nice now, and the drugs must be working, so lets let the sleeping dog lay? I would not want to go thru all those tests again, explain all that to him. Is he a young DR? I sometimes think the young dr's want to cure the world of all it's ills :rolleyes:
Sleep on this new info, let your brain think about it and see how you feel in the AM. Remember YOU ARE IN CHARGE!!!!! and you may vent here anytime you want! :bouncing:
duttin
06-14-2006, 12:40 AM
Lilc,
So sorry to hear about your ordeal.
How much expeience does this neuro have with MS?
Everything I have read on the web and at neuro's office MS is a diagnosis of exclusion and your previous neuro seemed to pretty up front and on top of things.
You don't have to have positive evoked potentals to have MS.What about the rest of the test,Romberg,babsinski,hyper or hyporeflex's?
Have you read the radiologist report yourself?
I checked my lumbar puncture results and one section for o-bands is for blood serum and ond is spinal fluid.
I had used recreational drugs during my youth,but neuro explained it was out of my system by now.Did he explain what the lesions were? Or how he come to his conclusion?
I'd kick him to the curb and find a neuro that dealt primarily with MS.This your life and how dare a neuro mess with it.Obviously the copaxone is helping.
Have a good cry,it helps at times,take some time to absorb the experience of this neuro.You said he doubted you the first appointment.
Oh, I'd like to kick some of these neuro's right in the seat of their pants.They always want a black and white case.If it isn't bad enough you have lesions of the brain,they want something else to be wrong.
My prayers are with you
Toni
So sorry to hear about your ordeal.
How much expeience does this neuro have with MS?
Everything I have read on the web and at neuro's office MS is a diagnosis of exclusion and your previous neuro seemed to pretty up front and on top of things.
You don't have to have positive evoked potentals to have MS.What about the rest of the test,Romberg,babsinski,hyper or hyporeflex's?
Have you read the radiologist report yourself?
I checked my lumbar puncture results and one section for o-bands is for blood serum and ond is spinal fluid.
I had used recreational drugs during my youth,but neuro explained it was out of my system by now.Did he explain what the lesions were? Or how he come to his conclusion?
I'd kick him to the curb and find a neuro that dealt primarily with MS.This your life and how dare a neuro mess with it.Obviously the copaxone is helping.
Have a good cry,it helps at times,take some time to absorb the experience of this neuro.You said he doubted you the first appointment.
Oh, I'd like to kick some of these neuro's right in the seat of their pants.They always want a black and white case.If it isn't bad enough you have lesions of the brain,they want something else to be wrong.
My prayers are with you
Toni
lilc
06-14-2006, 07:46 AM
Thanks, Angels!
It's so strange, this is the same neuro practice my first neuro was at. SHE (my first) was very young - and very bright, and not arrogant, and very curious and determined. This new (to me) neuro is an old guy, very nice and personable. But I don't think he is as thorough. He said I'm a puzzle. Oh, but I don't have Lupus or Lyme. And he isn't arguing to stop any meds, in fact the drugs discussion came up when he offered something for fatigue. I asked what type of drug it was - because of that period of drug use, I don't want amphetamines. Turns out he was suggesting an amphetamine, I declined.
Steph, I grew up in MN and regularly got caught in the spray for mosquitoes as a kid! And had mono at 15.
My first neuro left this practice to start her own, but I can't find her. I think I need to start shopping around again, though.
Thank you for being here for me, love you angels!
It's so strange, this is the same neuro practice my first neuro was at. SHE (my first) was very young - and very bright, and not arrogant, and very curious and determined. This new (to me) neuro is an old guy, very nice and personable. But I don't think he is as thorough. He said I'm a puzzle. Oh, but I don't have Lupus or Lyme. And he isn't arguing to stop any meds, in fact the drugs discussion came up when he offered something for fatigue. I asked what type of drug it was - because of that period of drug use, I don't want amphetamines. Turns out he was suggesting an amphetamine, I declined.
Steph, I grew up in MN and regularly got caught in the spray for mosquitoes as a kid! And had mono at 15.
My first neuro left this practice to start her own, but I can't find her. I think I need to start shopping around again, though.
Thank you for being here for me, love you angels!
duttin
06-14-2006, 09:02 AM
Lilc,
I done some checking on coke and meth use,I called a family friend,who is a Dr in Michigan and I ask him about the long term effect of these drugs and what if any brain disorders would they leave.He stated that they could cause cognitive damage ,but not lesions.(he use to be a team DR for a major football team).If I have questions I call him,he's been a great help to me .
I as a child use to run through the foggers for mosqito's,they still fog for them here.
I've had mono twice.Once when I was 14 and then again when I was 20.
Take care,I hope you find a good young neuro.
Toni
I done some checking on coke and meth use,I called a family friend,who is a Dr in Michigan and I ask him about the long term effect of these drugs and what if any brain disorders would they leave.He stated that they could cause cognitive damage ,but not lesions.(he use to be a team DR for a major football team).If I have questions I call him,he's been a great help to me .
I as a child use to run through the foggers for mosqito's,they still fog for them here.
I've had mono twice.Once when I was 14 and then again when I was 20.
Take care,I hope you find a good young neuro.
Toni
StephanieAnne
06-14-2006, 05:01 PM
See the mono, the mosquito spray and we live in or did live in a cold climate and research is saying that all of those things are pointers toward one being more succeptible to MS, and we MS sisters have all of that and more!! ;)
When I went to a MS researcher dr for a consultation, he checked me out, read all of my MRI's, asked lots of questions, and then turned to me and said you are a very interesting case, hmmm he then suggested cognative testing, and a 5 day stay of solumedrol. and I never went back to him :D
The dr's don't know everything, sorry, they don't and we know our bodies better than anyone, and maybe the dr's need to listen to how we feel when making their dx. ok one more thing, maybe this new dr didn't think very much of your other dr and wanted to prove her wrong?? Ya just never know :rolleyes:
I hope you are feeling better today lilc, and just remember that we have all had those crummy dr visits, where when you leave you feel worse than when you went in.
When I went to a MS researcher dr for a consultation, he checked me out, read all of my MRI's, asked lots of questions, and then turned to me and said you are a very interesting case, hmmm he then suggested cognative testing, and a 5 day stay of solumedrol. and I never went back to him :D
The dr's don't know everything, sorry, they don't and we know our bodies better than anyone, and maybe the dr's need to listen to how we feel when making their dx. ok one more thing, maybe this new dr didn't think very much of your other dr and wanted to prove her wrong?? Ya just never know :rolleyes:
I hope you are feeling better today lilc, and just remember that we have all had those crummy dr visits, where when you leave you feel worse than when you went in.
kelpie
06-14-2006, 11:28 PM
Hi Lilc,
What exactly does the sheet say in your LP report that says no bands? Does it say Reference Range: No Bands -- or something like that? If so, it's not saying you don't have O-bands, it's saying the norm is "No Bands"!! If on the 2nd sheet it says you have greater than 5 bands, then that's the result of your test - the No Band portion could just be a reference range. You might want to post exactly what it says - also there should be an interpretation of some sort - on the page that says you have 5 bands, isn't there some kind of paragraph interpreting this?
(I'm referring to my LP report, so just thinking this may be the case with yours.)
Good luck with all of this. Glad you're continuing the C.
What exactly does the sheet say in your LP report that says no bands? Does it say Reference Range: No Bands -- or something like that? If so, it's not saying you don't have O-bands, it's saying the norm is "No Bands"!! If on the 2nd sheet it says you have greater than 5 bands, then that's the result of your test - the No Band portion could just be a reference range. You might want to post exactly what it says - also there should be an interpretation of some sort - on the page that says you have 5 bands, isn't there some kind of paragraph interpreting this?
(I'm referring to my LP report, so just thinking this may be the case with yours.)
Good luck with all of this. Glad you're continuing the C.
dutchess99
06-15-2006, 12:22 AM
I can't seem to get a correct answer and my friend that has MS said this sounds like her mess. Here goes, I had a baby Feb of 2005 and developed HELLP. Almost died they say. Haven't felt good since then. Kept going back and forth to the doctor and got brushed off. Went to Nashville for a family trip and ended up in the hospital with an unknown illness. I couldn't feel my arms or legs and was having diarrhea every 20 minutes. SEVERE abdominal pain. Noone ever came to a conclusion. Went more times to the doctor, finally one doctor order a rheumy profile. Came back positive ANA. Sent to rheumy doc. He repeated the test and 40 more. ANA was real positive and sed rate was off but everything else was fine. I have had a lot of bad things happen to my body here lately. I was diagnosed with raynauds phenom.
Here are some symptoms, maybe you can shed some light:
my hair is coming out (but not in patches, all over)
nausea and diarrhea (already diagnosed with IBS)
extreme muscle weakness especially in my arms and legs
cramps in my legs and especially in my arms (feel like they are drawing up)
bad shoulder pain (discovered a knot there)
extreme fatigue
have on and off abdominal pain
my hands and feet go to sleep, feels like a crawling sensation on my face and hands and feet.
headaches
have cramps in my hands and all veins are visible, weird
feel foggy headed and have dizziness
been diagnosed with orthostatic hypotension. I could go on with symptoms but can anyone shed some light? :confused:
Here are some symptoms, maybe you can shed some light:
my hair is coming out (but not in patches, all over)
nausea and diarrhea (already diagnosed with IBS)
extreme muscle weakness especially in my arms and legs
cramps in my legs and especially in my arms (feel like they are drawing up)
bad shoulder pain (discovered a knot there)
extreme fatigue
have on and off abdominal pain
my hands and feet go to sleep, feels like a crawling sensation on my face and hands and feet.
headaches
have cramps in my hands and all veins are visible, weird
feel foggy headed and have dizziness
been diagnosed with orthostatic hypotension. I could go on with symptoms but can anyone shed some light? :confused:
lilc
06-16-2006, 07:07 AM
Steph, you are right, and I honestly think the nice doctor just doesn't know much about MS. As I recall he didn't know that Copaxone is a daily injection - that should have been a red flag!
kelpie, VERY helpful info. I don't have a copy of the LP results, but was looking when he was going through my file. There were 2 pages, he was scanning the paragraphs at the bottom. First page said "no o bands", second page said greter than 5 o bands, could be indicative of MS but should be supported by clinical evidence (or something like that). THANK YOU, I was worried they had sent pages from two different LPs.
I'm going to find an MS specialist. GWU has an MS clinic, guess that's where I should go. Thank you so much, Toni, Steph, Kelpie!!!
dutchess, sorry I don't know anything about ANA and such, but some of your sx sound neurological. Have you seen a neurologist?
kelpie, VERY helpful info. I don't have a copy of the LP results, but was looking when he was going through my file. There were 2 pages, he was scanning the paragraphs at the bottom. First page said "no o bands", second page said greter than 5 o bands, could be indicative of MS but should be supported by clinical evidence (or something like that). THANK YOU, I was worried they had sent pages from two different LPs.
I'm going to find an MS specialist. GWU has an MS clinic, guess that's where I should go. Thank you so much, Toni, Steph, Kelpie!!!
dutchess, sorry I don't know anything about ANA and such, but some of your sx sound neurological. Have you seen a neurologist?
dutchess99
07-12-2006, 10:03 AM
I haven't seen a neuro. I have been sent for a second MRI to recheck some things. My legs still go to sleep when I go to the bathroom and my face tingles all the time.