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Terrified ... Likely MS Diagnosis - lumbar puncture next week

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Posted 12/28/2009 2:21 PM (GMT 0)

There ae now words to desribe my fear. I have had a brain and a cervical MRI each which showed lesions.  However, I was also diagnosed with Lyme in August of this year and went on a course of antibiotics. My last blood work (4 weeks ago, showed  the Lyme antibodies still active.) My neurologist has scheduled me for a spinal the first Thursday of the new year.

It seems that everyone I speak to leans toward me having MS (two neuros, one is a top specialist in NYC). The specialist however will not make a determination until the lumbar punture. I have been online since August reading about the drug therapies for MS and all I read are nightmare stories about the disease, the side effects, lifelong agony, etc.

Can anyone give me hope, or should I just give up?  

Posted 12/28/2009 4:54 PM (GMT 0)
Hi,
Hey, don't give up ok? I had to have a spinal tap. Don't be scared. I was told to be still for 3 hours afterwards because the fluid is drained off and that not to move and I would likely have a very bad headache from the fluid being drained and brain exsposed. Guess what. Honest truth, the fire alarm went off! I had to walk down 3 flights of stairs and out of the building!! I was scared, but you will get through it, there is pressure and very uncomfortable, but there are things that hurt alot more, it wasn't that bad once it was done and it doesn't take long to drain the fluid. Promise, it's not as bad as it sounds....So smile!! It will be fine..Chris
Posted 12/28/2009 6:22 PM (GMT 0)
Thanks for the encouragement! At this point I am equally (if not more) scared of the diagnosis after the test. But I really appreciate you writing. blush

Posted 12/28/2009 6:25 PM (GMT 0)
You will not let the disease scare you, you just be determined is all. I am 46 so diagnosed late in life. The truth is, we can both live a long time.....:)
Posted 12/28/2009 8:02 PM (GMT 0)
Thanks again !
Posted 1/6/2010 1:32 PM (GMT 0)
Hi there. I have had the disease for nearly ten years now and it hasn't stopped me marrying, having two kids, working etc etc. My sister has had MS for over 25 years and sure it's caused problems but hasn't stopped her living her life to the full either. in many ways the worse thing is often the fear of what might happen. i'm not trying to minimise the effects of MS, as I'm sure you're already aware, it can be a pretty horrible disease, but it certainly doesn't mean the end of hope. Everyone is different but for me, it actually had some positive effects in that it made me determined not to waste any more of my life and to live it to the full. I don't mean to sound trite, but I think you should try to do the same....
Posted 1/6/2010 2:27 PM (GMT 0)
Oscarcat68,
I appreciate you taking the time to write. Your attitude is very inspiring. My LP is tomorrow and I am looking forward to finally getting some answers.
I am not a negative person ordinarily, I simply was expressing my fears, since I have to be upbeat and positive 24/7 for everyone around me and act like I am perfectly fine with everything. I guess I offended you, and for that I apologize. I think I just needed to say that I was scared, that's all.
Again, thank you for sharing you story and I am very happy to hear about your experience with MS. It is very positive.

jcsher
Posted 1/6/2010 2:31 PM (GMT 0)
Hey, you need not ever apologize my friend, I have just been throught the initial fears myself, I know the fear very well. My first MRI, the operator I could hear say, look at all the cancer he has in his brain. That terrified me. So getting diagnosed with MS was such a relief. We are all here for you always and no one here could be offended. We are a family here to support each other...Chris
Posted 1/6/2010 3:26 PM (GMT 0)
Thanks Chris! Your comments have really eased my fears a great deal. I have actually moved beyond the fear of diagnosis to looking forward to getting a diagnosis so I can start getting treatment!

Thanks again!
Posted 1/6/2010 4:06 PM (GMT 0)
THAT is the spirit! You can do this. God only gives us what we can handle and that is proof that you are special and do whatever you set your mind to! YOU are our inspiration! Your positive attitude drives all of us!
Posted 1/6/2010 4:09 PM (GMT 0)
My email is [email protected]! Drop me an email or feel free to call me at 608-712-6365 if ever feel like you need an understanding voice... Hang in there!!
Posted 1/6/2010 11:10 PM (GMT 0)
I will check with you Chris after my LP and let you know how it goes and what the outcome is. Thanks so much!
Posted 1/7/2010 4:26 AM (GMT 0)
Hi jsher,

Just to let you know....my lumbar puncture yesterday went well for me. I told them not to give me any sedatives because I don't like them. There was very little pain and everything went smoothly. I went home and went to bed because they told me to lie flat for 24 hours to avoid a spinal headache.

I did wake up this morning with muscle cramps in my abdominal muscles and rib cage but I think that's just my own unique reaction. A muscle relaxant has helped quite a bit.

I did not get a spinal headache at all.

Good luck with everything! You're in my thoughts and prayers!
JoAnn
Posted 1/7/2010 2:14 PM (GMT 0)
Good luck and yes by all means, let me know how it goes, you are in my prayers!! Chris
Posted 1/12/2010 2:02 AM (GMT 0)
It is so nice to be able to read about other peoples experience. I see the neuro in Colo. tomorrow I have cried off and on for the past 4 days since I was told I had lesions in my brain. You are so right it is the fear that is the worst the symptoms at times can be irritating. I had a friend say to me just think of it as the aliens are contacting you. I guess humor is good.
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