Aa
Hmm- what..just worried..no question just venting
Haven't posted here in awhile I actually started feeling better...still have the tremors and the spasms but those I can live with....All was good until about 4 days ago when I started my drunk walking again...this happened to me in July of this year and lasted for a very long time....
I have had several mri's with ms protocol of the spine and the brain some of them where done 3T Mri' they where clean ...the only thing they found so far where some O bands in my spinal fluid and some of the physical exams where off..also increased protein level in my spinal fluid..
They have ruled out all mimics...
I really like my neuro she said classic MS but not 100 percent on dx with clean Mri and yes it sometimes takes time for MRI's to show anything ....but she would expect my MRI to show at least something maybe a lesion..since my symptoms are extremely like my gait...
I saw her today ....and she has ordered another spinal tap for tomorrow ...she is also contacting her friend who is specialized neurologist so I guess the neuro of neuro to see what other test she wants to run from the spinal fluid
Probably the most scariest thing and she doesn't think it is she ordered Chest x-rays to rule out cancer....hmm which does worry me ...keeping my fingers crossed
I like that fact she wants to be 100 percent sure so she is not ruling out MS, or some type of genetic disorder ,,she said it some thing definitely auto ..just not 100 percent
So I sit in limbo ...She is going to send me to her friend the specialist at Baylor depending on the spinal fluid results...I guess I can be thankful that my neuro wants to get to the bottom of this...she wanted me to go to someone that she knows because she said some neuro think it's all in someone's head ( haven't we all heard or read about that) if all the pieces of the puzzle don't fit...she said some neuro are just lazy and don't want to get bottom of it..SO YES I'M THANKFUL FOR HER
Not really wanting to do another spinal tap but if gets me closer to dx I'm happy to do it..I just want to find out what is causing this so I can start being treated ...in the mean time I will continue to walk around like I'm drunk ...
Thanks for reading this just need to vent..I'm little down
Kelly Lewis
I have had several mri's with ms protocol of the spine and the brain some of them where done 3T Mri' they where clean ...the only thing they found so far where some O bands in my spinal fluid and some of the physical exams where off..also increased protein level in my spinal fluid..
They have ruled out all mimics...
I really like my neuro she said classic MS but not 100 percent on dx with clean Mri and yes it sometimes takes time for MRI's to show anything ....but she would expect my MRI to show at least something maybe a lesion..since my symptoms are extremely like my gait...
I saw her today ....and she has ordered another spinal tap for tomorrow ...she is also contacting her friend who is specialized neurologist so I guess the neuro of neuro to see what other test she wants to run from the spinal fluid
Probably the most scariest thing and she doesn't think it is she ordered Chest x-rays to rule out cancer....hmm which does worry me ...keeping my fingers crossed
I like that fact she wants to be 100 percent sure so she is not ruling out MS, or some type of genetic disorder ,,she said it some thing definitely auto ..just not 100 percent
So I sit in limbo ...She is going to send me to her friend the specialist at Baylor depending on the spinal fluid results...I guess I can be thankful that my neuro wants to get to the bottom of this...she wanted me to go to someone that she knows because she said some neuro think it's all in someone's head ( haven't we all heard or read about that) if all the pieces of the puzzle don't fit...she said some neuro are just lazy and don't want to get bottom of it..SO YES I'M THANKFUL FOR HER
Not really wanting to do another spinal tap but if gets me closer to dx I'm happy to do it..I just want to find out what is causing this so I can start being treated ...in the mean time I will continue to walk around like I'm drunk ...
Thanks for reading this just need to vent..I'm little down
Kelly Lewis
Yeah, I know Columbus, twice last week for the holidays.
It's nice to see a fellow Texan!
Let me know what you think of the doctor, how things go etc.. I might need to see them one day.
It's nice to see a fellow Texan!
Let me know what you think of the doctor, how things go etc.. I might need to see them one day.
Actually I live in the Austin area (Kyle) TX and as I'm sitting here typing away I"m at parents house in Columbus TX,,,have you been through Columbus...
Not sure on the name of the dr. but I know it's at Baylor I think it might be a women dr...I think it might be someone she went to school with,,,all I know is she said that she trusted her and that she didn't want me to go to anybody in austin or SA because she didn't feel comfortable sending me there ...
I got to say that I was not sure about my Nero at first but she has proven to be a kinda hearted..aggressive when comes to finding a cause , not afraid to reach out for help when she doesn't know the answers...Good luck to you and sounds like you in good hands as well..
Not sure on the name of the dr. but I know it's at Baylor I think it might be a women dr...I think it might be someone she went to school with,,,all I know is she said that she trusted her and that she didn't want me to go to anybody in austin or SA because she didn't feel comfortable sending me there ...
I got to say that I was not sure about my Nero at first but she has proven to be a kinda hearted..aggressive when comes to finding a cause , not afraid to reach out for help when she doesn't know the answers...Good luck to you and sounds like you in good hands as well..
Are you in the Houston area? My aunt is a dermatologist and she started me out with Dr. Monday from Houston neurological Institute and I like her alot. My aunt also was saying something about seeing a MS Neuro specialist who is the one of the lead guys at Baylor on MS, and probably all things neuro. If this is they same person it sounds like your in good hands. I haven't been to the Baylor guy cause I don't think I'm really that bad off. Good luck.
Kelly,
I'm glad to hear this next LP was done and is now behind you. Good for this neuro who won't stop looking for an answer.
As for being here without an MS dx, you know you are not alone. This is a very welcoming place to hang out and you are always welcome. There is also the group for undiagnosed neurological problems that has a lot of people in limbo as well. They are also a great source of support if you haven't been there already.
http://www.medhelp.org/forums/SURVIVING-NEUROLOGICAL-LIMBO-LAND---NO-DX/show/553
take it easy this weekend and no lifting the kiddos while you are healing from the LP.
be well, Lulu
I'm glad to hear this next LP was done and is now behind you. Good for this neuro who won't stop looking for an answer.
As for being here without an MS dx, you know you are not alone. This is a very welcoming place to hang out and you are always welcome. There is also the group for undiagnosed neurological problems that has a lot of people in limbo as well. They are also a great source of support if you haven't been there already.
http://www.medhelp.org/forums/SURVIVING-NEUROLOGICAL-LIMBO-LAND---NO-DX/show/553
take it easy this weekend and no lifting the kiddos while you are healing from the LP.
be well, Lulu
WoW 5 girls can't imagine that my 3 boys my hubby and my dog keeps me busy enough....Thank you for your kind words and I too hope you will find answers that you are seeking ...so the right treatment can be started..
Like I have told to my family and friends I don't (like all of usf here ) nobody want's a diease of any kind but the not knowing is so hard...with Dx the proper treatment can be started and to me that is one of hardest things
So I'm sending postive energy your way and take care as well
Kelly
Like I have told to my family and friends I don't (like all of usf here ) nobody want's a diease of any kind but the not knowing is so hard...with Dx the proper treatment can be started and to me that is one of hardest things
So I'm sending postive energy your way and take care as well
Kelly
I think that's what's so nice about this forum...for those of us who have to always wait, it's easier with all the understanding on our side. It is funny to hear relief about one thing but be a little bummed (well, not with the cancer situation) that there is still no solid info. I'm still waiting for my lp results after two weeks---four vials taken as well. And blood drawn. I had an MRI three years ago with a suspicious lesion and other spots in white matter (due to hbp or migraine of course) and a new MRI about two weeks ago showing more and larger legions in solidly suspicious areas for MS. I have an adult daughter with MS, too. Yet, still must wait...
I love your "house full of boys." I had five girls! I'll be thinking of you--take care!!
LPT
I love your "house full of boys." I had five girls! I'll be thinking of you--take care!!
LPT
Well had my spinal tap and chest x ray today..Great news they ruled out lung cancer which I didn't think I had but a clean xray is a relief..
I had spinal back in July which didn't hurt but this go around it was quite painful he had hard time getting me numb and had to give me more medicine. Also he must of been close to a nerve bundle he said because I had sharp shooting pains down my left leg.
With all that being said it's done and over with and I told my neuro to get what see needed because I'm not doing it again,,,ha ha I'm not kidding
They got 4 seperate tubes of fluid and doing a lot of testing on it,,,which makes me happy...doing another MS panel,,,looking for auto disorders, some kind of cerbellum diease and lot more testing ,,,So time will tell...hoping this will bring me closer dx
Some times I feel like I shouldn't post here without clear dx but everybody is kind and knowledgable I can't help..
Thanks again
Kelly
I had spinal back in July which didn't hurt but this go around it was quite painful he had hard time getting me numb and had to give me more medicine. Also he must of been close to a nerve bundle he said because I had sharp shooting pains down my left leg.
With all that being said it's done and over with and I told my neuro to get what see needed because I'm not doing it again,,,ha ha I'm not kidding
They got 4 seperate tubes of fluid and doing a lot of testing on it,,,which makes me happy...doing another MS panel,,,looking for auto disorders, some kind of cerbellum diease and lot more testing ,,,So time will tell...hoping this will bring me closer dx
Some times I feel like I shouldn't post here without clear dx but everybody is kind and knowledgable I can't help..
Thanks again
Kelly
Thanks for the kind words..I needed it today ..I'm not much of a crier but I did cry today at of frustration ...it's like roller coaster of emotion your up and you are down...I feel much better...it's alway scary when someone throws out the cancer word but I know in my hearts of hearts it's not...I think she is covering all bases....Looking forward to big fat iced americano after my lp full caffine ..ha ha
Kelly sounds like you are in good hands. I hope the LP goes well. My MS showed up on my first MRI and it still took years for a diagnosis. I think the Doctors have to prove it to the insurance companies especially with the cost of the DMDs. I will be pulling for you.
Alex
Alex
Kelly,
Nice to see you back but sorry to hear the reason why. Has she done MRIs on higher strength machines. As we all know sometimes lesions don't show on the MRI but the higher the telsa the better chance of showing.
My nuero said the same thing to me that it is classic MS but needs the lesions to prove it so we are working on that now.
I hope your LP goes smoothly and remember we are always here to vent on, we all deserve to once in a while right? ;)
Paula
Nice to see you back but sorry to hear the reason why. Has she done MRIs on higher strength machines. As we all know sometimes lesions don't show on the MRI but the higher the telsa the better chance of showing.
My nuero said the same thing to me that it is classic MS but needs the lesions to prove it so we are working on that now.
I hope your LP goes smoothly and remember we are always here to vent on, we all deserve to once in a while right? ;)
Paula
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