Want to Pick Your Brains

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Abbeygirl513
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 6/10/2010 6:03 PM (GMT -6)   
 
   Just wanted to pick your brains and see if any of you have heard of this.....
Spinal tap came back normal neurologist said, doesn't know whats wrong with me... At the Gp's one day I asked for the results of the Spinal Tap just to look it over, it said there were a few lymphocyetes and one group of degenerated cells (of uncertain origin/significance).  No malignant cells, no acute inflammatory cells identified. Any ideas or knowledge of this would be greatly appreciated
Still waiting patiently to see a MS specialist..
 
Thanks

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 6/10/2010 7:03 PM (GMT -6)   
Hi Abbey,

That is good news that your spinal came back normal. Did you say that your MRI's were also clear?
Have you noticed any improvement in your symptoms?
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 6/10/2010 7:16 PM (GMT -6)   
Hey Abbey,
 
I know you are in Canada, and you will have to be patient.  Unless you have private insurance your wait could be months.  MS is not considered life threatening and so if that is what they think they are looking for, they will take their time. 
 
I am sorry you have to go through this long, awful process.  Best of luck.  Please keep us posted.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Abbeygirl513
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 6/10/2010 8:33 PM (GMT -6)   
Thank you for your replies....♥♥
everything to date has come back normal ..... this is why i'm so frustrated... something is definetly wrong but they have no idea what..
I have had good days and bad days throughout... the good days are few tho and i take full advantage of them when i have them. My legs are still wobbly and i'm still having muscle spasms and tremors in my hand. Sometimes i'll be having a good day and in the blink of an eye everything starts up again, yesterday i was ok... i fell asleep and when i woke up i was all shakey and wobbly again. so no I would have to say no improvements, now am having deep burning in my legs also... It seems like some symptoms lighten up a bit and then others take over..?? The good news is that I'm being refered to a MS clinic run by Doctor John O'Connor in Toronto, so i'm happy about that. If its not MS they will be the ones to know..
Does anyone know what lymphocytes and dergenerated cells mean... When i put this in the computer ALS,MS and parkinsons came up ??
Will keep you posted
Thanks again

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 6/11/2010 6:09 AM (GMT -6)   
I had a lumbar puncture this past January and my Neurologist said that I had some killer T-Cells (lymphocytes) in my spinal fluid. He explained that they are not typically found in the spinal fluid because of a blood barrier? that prevents them from entering the spine. My results showed 3 oligloclinal bands which indicate possible MS. I have been sick with lyme disease for a year now and suffer with a number of neurological issues including numbness, muscle pain and fatigue and some mental processing difficulty. I have blurred vision, muscle twitches and the wobbly legs that you describe. I am currently being treated by a lyme doctor with high dose antibiotics but follow-up regularly with my Neurologist to monitor for MS.

Glad to hear that you are going to see an MS specialist in Toronto. I'm sure that your eager to find out what is going on.

Please let us know how you make out.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 6/11/2010 8:24 AM (GMT -6)   
There is indeed something called a blood brain barrier.  It is a barrier that exists in the capillaries of the brain.  Blood is actually toxic to the brain as well as many things found in blood.  The capillaries in the brain have extra filters to guard what is being passed through to the brain.  The only things that should reach brain cells from the blood would be oxygen, glucose and some hormones.  Lymphocytes in your cerebral spinal fluid indicates a breaking down of the blood brain barrier.  Lymphocytes, specifilly T-cells like to confuse myelin as a pathogen.  T-cells will damage myelin and cause the electric impulses traveling along your nerve cells to go haywire.
 
It is a bit like removing the insulation on a wire.  That is the disfunction of MS.
 
So, having lymphocytes in your cerebral spinal fluid does indicate a break down of the blood brain barrier.  This does not always mean MS however.  Infections such as lyme disease can also cause this sort of reaction. 
 
I hope this information helps.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 6/11/2010 8:57 AM (GMT -6)   
Gretchen,

Thanks for that explaination, I really don't understand what is going on with me and why I continue to have so much numbness. Other lymies report having numbness but not to the extent that I experience. I feel even worse since starting the antibiotic treatment. My neuro has recommended immunogobulin thearapy - IVig to reset my autoimmune system. My plan was to delay the IVig until after I have completed my lyme treatments however, I don't want to continue to damage my myelin. My LLMD is not opposed to the IVig, but has cautioned me about steroids. Are you aware of anyone that has had lyme progress into MS?
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


Abbeygirl513
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 6/11/2010 9:13 AM (GMT -6)   
Thanks for the insight... this is helpful yet scarry at the same time.

Maybe I should ask also for the lyme test.. as there were no o-bands found in the spinal fluid. So frustrated that he told me nothing was found on the spinal and then i find this out... Doctors...errrrr. I am so glad that I decided to ask this question here... you are all so knowledgeable and helpful. Thank you so much

Am hoping I will be going to Toronto sometime this summer and will be sure to let you know how things go there.

Thanks Again, wishing you all a great day ☺

Abbeygirl513
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 6/11/2010 3:24 PM (GMT -6)   
Just wondering one other thing !! Could the lymphocytes be from the spinal tap itself ?? because he did have a hard time getting the neddle in. He was actually going to stop and do it with a mri because he was having such a hard time, but tried once more and it went thru !!
Very painfully...
Does the degernerated cells suggest that it's the capilliaries that are degenerating ?? Sorry I feel kind of dumb asking all of this, but i don't know... know you will tho ☺

thanks

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 6/11/2010 6:43 PM (GMT -6)   
Abbey,

It was a good idea for you to get a copy of the results of your spinal.   You will want to share them with the MS specialist that you will be seeing this summer.     It would be hard to determine if your results were skewed as a result of the procedure.    I think it would wise for you to request a Western Blot blood test to rule out Lyme.      I'm not really sure what the degenerated cells signify.    Maybe Gretchen would know.

Good Luck and I hope that you feel better soon.

 


Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 

Post Edited (betterhealth) : 6/11/2010 6:57:14 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 6/11/2010 7:45 PM (GMT -6)   
Hey Abbey,
 
Betterhealth is right, always get a copy of your own test results. I have a whole lovely notebook with various things in it. 
 
The lumbar puncture would not cause the lymphocytes.  I have no idea about the degenerative cells being capillaries.  
 
Abbey, many people feel it is very difficult to get an MS diagnosis in Canada.  This is due to the expense to treat.  I have heard of many people having had MS symptoms for years without getting any answers.  When they crossed the border and saw a non-canadian doc, they were diagnosed right away.  Canada has a bit of a reputation for waiting until there are lots of lesions and very clear disability before giving a diagnosis.  The reason is, Canada doesn't want to pay for treatment.  Treatment for MS is extremely expensive.  Copaxone is $2,800 US  per month.  Tysabri is upwards of 10k per month. 
 
So be very assertive.  Insist on answers to things like "why do you suppose there were lymphocytes in my CSF?"  What cause me these symptoms.  If you have ANY lesions ask for answers or tests to get those answers. 
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Abbeygirl513
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 6/11/2010 8:14 PM (GMT -6)   
 Yes I guess that is very true about the expense of ms treatment... never thought of it from that point of view. I will ask my gp for the blot test the next time i see him, and have that done while I'm waiting for toronto.
Thanks for all of the suggestions you have given. Will post again next time I have any questions      :)
 
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 22, 2017 8:22 PM (GMT -6)
There are a total of 2,871,988 posts in 315,161 threads.
View Active Threads


Who's Online
This forum has 156654 registered members. Please welcome our newest member, lelapam.
380 Guest(s), 6 Registered Member(s) are currently online.  Details
Rupee, PeteZa, somegirl, breakthecycle, Fletch10, RiddleMeThis


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer