I'm glad this test is pass me now.

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RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 7/31/2009 12:37 PM (GMT -6)   
well they did the spinal tap the other day. i even told the tech i had some bubbled dics. well she found 1 of them and had to start over. so i was stuck 2 times :( i had to stay in the hospital for 8 hrs afterwards. and then bed rest for 2 days. only allowed to get up to go to the bathroom and back to bed.
 
i have extrem pain in my back and legs. and no meds will even come close to touching it. i did ask why they needs 5 viles of flued. as i thought that was a lot. i was told they are checking me for MS, CF an Lyme. plus something else i cant rember.
 
i was told the test report will take about 7 days  to come back. i am not holding my breath really. but i felt i had no choice in the metter. as it maybe the only way for me to get treatment. the nuero said if he finds what he is looking for i need aggesife treatment. crossing my fingers and toes here that it shows what he needs to see. so i can start my road to recovery. or to better days ahead at least.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 7/31/2009 12:49 PM (GMT -6)   
Hey RD,
 
I am not a fan of lumbar punctures.  I had pretty much the same experience.  They were looking for everything.  It took three sticks, and six vials.  I felt better the next day though.  I am very sorry to hear that you are in so much pain!  I got that headache but it didn't last but 12 hours. 
 
My results did come back in one week.  I hope that you get some answers that allow for some effective treatment.  I am thinking of you.  Hang in there and take good care.  Keep drinking lots of fluids. 

bablymers
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Date Joined Oct 2006
Total Posts : 1458
   Posted 7/31/2009 12:53 PM (GMT -6)   
Best wishes, RD. Thinking of you! Hope you feel better soon.

RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 7/31/2009 1:10 PM (GMT -6)   
thank you both for you thoughts, i was tickled to be told to drink a lot of caffeine, and that my Mt. Dew was perfect. it made my day. i had a cooler fixed up with them in it i took with me. they gave me loritabs in the hospital so i slept most of the time. or at least i did after they moved me away from the 2 guys who were yelling. i was in be tween them, they placed me in a room then with a TV and door.

at first they were concerned about me wearing my sunglasses. as light sensitive is a sing of trouble. i told them i have had this issues for months now. so by placing me in the room and closing the door with all the lights off. i felt a lot better. or as well as i could.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


gorbybelle
Regular Member


Date Joined May 2009
Total Posts : 147
   Posted 7/31/2009 1:34 PM (GMT -6)   
Good Luck & Best Wishes

gorbsx

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/31/2009 1:48 PM (GMT -6)   
My thoughts and prayers are with you, RD. I'm praying for relief for you, as well as swift and defnite answers!
 


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/31/2009 2:37 PM (GMT -6)   
Good luck RD! It would be great if this came back positive. But eveni if it doesn't- it will rule out the other things.

not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 7/31/2009 3:33 PM (GMT -6)   
Hey RD, I hope you are feeling better soon!! good luck with everything.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/31/2009 4:48 PM (GMT -6)   
thank you everyone, i know this test will behond a doubt rule out MS and other things, and i pray it does rule in Lyme. so i can get treatment. i think it is so wrong to have to go thro such an advise procedure when i do in fact have a positive IgM WB. this along with my sx should of been more then enough to receive treatment.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/31/2009 5:16 PM (GMT -6)   
RD, I'm so sorry you had to go through this and hope you end up with the results that will get you the treatment needed. Hope you feel better.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/31/2009 5:20 PM (GMT -6)   
Thank you scorpio, i sure hope so too.

how have you been? i hope all is well your way or as well as can be. i have been a lil worried about you. havent seen you posting much at all lately. is the new IVs working for you at all?
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 7/31/2009 7:36 PM (GMT -6)   
I feel for you, I did not appreciate my Spinal Tap. They promised me that they would give me something to relax me( I had my own pills but didn't take them) and I walked in and so did the Radiologist so they said were doing it now no pills for you. I was so scared and upset I had my first panik attack on that table.
 
They found what they wanted the O bands to say I had MS. They did not find any Lyme. My LLMD told me there are different Lyme tests they can do and they picked the one that never finds Lyme because they didn't want to. Do you know what Lab and what tests they ordered.
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/31/2009 9:27 PM (GMT -6)   
Beth,

I think I'm going to request this test from my LLMD. I think it's time I know whether or not I have the O Bands so I know if I'm treating the right disease. I've always wondered if I had Lyme or MS and I think I was staying away from the LP because I was afraid it would prove MS. Combining my other symptoms and my MRI, all I really need is a positive LP to say I have MS.

I'm so scared for the results rather than the test...you are just treating Lyme right now, correct?

Can Lyme cause O Bands?
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"Breathe. Let Go. And remind yourself that this very moment is the only one you know you have for sure."
 

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/31/2009 10:25 PM (GMT -6)   
Beth, no i do not know what lab or test he ordered. i do know he is not totally against lyme tho. i still do not know what lyme disease test he ordered from my blood work tho. and the lab techs didn't know either when i asked. i even asked if it was the WB or ELISA. and they said no. so i am still in the dark there.

i did ask to be put to sleep for the test. and was told no they needed me awake to do it. but the staff at my hospital do work well with you. this part of it wasn't to bad.

Beth when you had your LP. did you have extreme pain run from your hip to your toes? they told me i could feel something akin to a charil horse in my legs. but i only had it in my left leg and it felt as tho they was pulling my muscle out.

i am still going thro what feels as tho i have a knife in my lower back right above my hip. how long should this go on for?

Jen, this is a tuff test to have. if you can do something different to ease your mind about MS, i would look into it before doing a LP. but if you well you need this done take some good meds first if they will let you. i had to go over everything i take the day b4 and they was going to have me slip my celebrex, but after i explained to them i have been on it for a yr, and that i really needed it they let me take it long as it was 12 hrs before hand.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/31/2009 11:12 PM (GMT -6)   

I've had every other test done for MS...I don't know what else to do. The brain fog is getting unbearable to the point where it feels like I'm forgetting who I am and who other people are...even though I can name them...I feel so distant from everything, like I'm not really doing or seeing anything that I actually am doing and seeing.

I really feel like I may have MS. And if I do have it, it is a rapidly progressive kind. I do not and have never had clear relapses and remissions...not since the day I got sick. It has been a constant downhill battle and I only remember one day where for a short time I felt somewhat normal.  

I know the meds for MS are for management and hopefully preventing future disease progression...and there is absolutely no way I could live knowing I cannot reverse these symptoms. I have NO quality of life. I spent 75% of my time on my mother's couch, had to drop out of college because I can barely remember something two seconds after I've said it...my muscles are so weak I can barely do more than walk to and from a car. I cannot imagine just watching myself deteriorate for the rest of this awful life that I'm living right now.

I'm so lost.


Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"Breathe. Let Go. And remind yourself that this very moment is the only one you know you have for sure."
 

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/1/2009 12:33 AM (GMT -6)   
Jen, have you been to the MS board and talked to some of them about your feelings? did you have a positive lyme test? its my understanding that some folks have MS caused by lyme. can this be a possible case for you? if this is so, i would think you need to work on the lyme first then address the other issues. JMHO.

i know there is no cure for either of the two. but there is treatment. and no 2 people are the same and no 2 treatments work the same either. but there is a lot of different proticals out there. you and your Dr. just need to work together to find out what is best for you.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 8/1/2009 5:15 AM (GMT -6)   
Rd and Jen, I got to hurry to go try to find the Airport in Conneticut and go home and see my Babies. Jen my Dr really thinks Minocycline is the way to go if you have MS. I do have Obands and they say that means MS I think not for sure that it means there is something going on in there but it could be other things. Once I got my MS diagnosis that was it for my Drs they had a word for it and there is no more they were going to do. My Nuero out East has found a few causes for my MS like problems and with Antibiotics I have gotten better once and I will again.
 
Rotten Dog, I don't remember the pain your describing it was 5 years ago. My back hurt alot I think because of how tense I got when they did the test. But I don't think you should still be having to much pain call your Dr. Sometimes they need to go back and put some of your blood back in your spine to seal the little whole but that should be causing headaches. If you hurt call your Dr.
 
Take care I should be home in 16 hours.
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 8/1/2009 8:36 AM (GMT -6)   
That sounds like sciatica, maybe they irritated the nerve or nerves in that area. My husband has had it several times and goes to the chiro and does stretches for it, but since the cause of your pain is from the LP, I would ask the Dr if this ever happens and will it subside on its own. Hope you have answers and healing soon! Also for Jen!

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 8/1/2009 11:03 AM (GMT -6)   
I have spoken with probably hundreds of people with MS as this was the diganosis I was sure of since the beginning...one day I came across lyme disease so I decided to find a doctor and get tested. The tests were just inconclusive...but I always had a weird feeling it was MS. I also had a weird feeling it was this or that too, but MS has stayed constant since there is no defnitive test for it.

The only thing that terrifies me about it...is that you cannot reverse symptoms with MS treatment; you can only try to prevent further damage.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"Breathe. Let Go. And remind yourself that this very moment is the only one you know you have for sure."
 

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/1/2009 11:40 AM (GMT -6)   
TS, i do have neuropathy in both legs and sciatica in my right leg, i only had the extreme pain in my left leg, and felt nothing in my right leg. today my back is still sore but nothing like it was yesterday. i have lived with back pain for most of my life tho.

i am just so sick of all the pain, and then to have test that add more pain. just pushes me over the edge.

Jen, MS or lyme either one there is no cure for, but in both there are meds to help control sx, and from what i read on MS they can give meds to try to slow down progression. i have a friend who has it and is in her 70s. she had it from the time she was a child.

you have to do what you feel is right for you. no one can take that away from you. but remember in either care you have sough treatment or Dx for. how accurate are the test to prove or disprove them. with one can you treat without doing harm if its the other. weigh your options well. JMHO

i do wish you on the road to recovery soon, and to find the answers you are looking for
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 8/1/2009 12:28 PM (GMT -6)   
I know there is no cure...but for lyme, you can reverse your symptoms. With MS, the damage is done unless you have a relapsing remitting type, which I do not fit the criteria for. I fit criteria for a progressive type without remissions.

The medications for MS are, just like you said, to slow progression. But the bottom line is, it is not going to get better than where you already are once you start treatment.

And I'm not willing or able to live this way. I don't know what I will do if I find out that's what I have.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"Breathe. Let Go. And remind yourself that this very moment is the only one you know you have for sure."
 

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 8/1/2009 4:49 PM (GMT -6)   
Jen, I feel for you and understand where you are coming from. When I woke up today I didn't know where I was. It took me several minutes to recognize my bedroom but then I couldn't remember where I lived or where the bedroom door led. Maybe it was only several seconds but it felt like minutes laying there trying to make sense of it all.

RD, I'm okay or as okay as can be right now. When I'm feeling this bad all I can manage to do is shut down and wait for it to pass. Can't wait to hear more about those precious little puppies. lol
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