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Jan 29, 2009 - 3 comments

Medical conditions

On 10-27-07 I had my blood work came back positive for ANA AntiNuclearur which test for: Lupus, Sjogrens, Rheumatology, and nothing was said to me!  I remember asking and they said well yes it was positive but we will watch it..sure.  Then in March I started this severe pain in my face not sure why??? I kept blowing it off  and kept cleaning my glasses about 50 times a day when I finally realized that I lost 99% of my vison in my left eye.  I wasnt scared called the optomitrist and spent a good 1 hour with him and he said...I think you have a brain tumor but you need to see the Specialist Opthomitrist!  Wow that was fun!  I thought maybe a eye infection!  Then next morning they rushed me in to see this Opthamologist for what turned out to be a turned out to be a two hours of test in his office.  I am not sure all the test you all talk about...visual ect..but I know he looked at my eyes inside and out sitting up, down, laying down, lights on, lights off, almost standing on my eyes..dilated till they couldn't get any bigger!  LoL  He said he saw scaring behind the eye?  Can that be true?  Can you have lessions behind your eyes?  He said NO Brain tumor, but you have MS and I want you to go straight to the ER and get a MRI w/ contrast and get a Neuro consult asap!  Well the ER doc was worthless..and didn't follow the orders the doctor ordered and didn't do it with I don't know if that makes a difference.  But he said no lessions in brain.  Then went to Neuro next day, and he put me on 500mg of predisone a day for 5 days to help releive the got most of eye sight back by 3-4 weeks.  I have still been very clumsy and off this just me being stupid...I need to go see him and he said he wants to do a LP and I am scared...because we did a neck MRI and should I bother?
On top of everything else I have COPD/EMPYSEMA and am on oxygen...HELP

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195469 tn?1388322888
by Heather3418, Jan 30, 2009

I am sorry you are having so many difficulties AND dealing with COPD.  Bless your heart.  You have enough on your plate.  I am sure that your blood oxygen levels have been checked to make sure that this balance problem is not caused from too much CO2 in your blood.  As you know, too much CO2 can cause problems all it's own.

Did the doctors say that the scarring they saw you had in your eyes was on the Optic Nerve?  That would carry alot of weight with a Neurologist and should be explained.  Your positive ANA should also be explained.  The inflammation has to be coming from somewhere and they need to find out.  Maybe concentrating on the things they did see, would be the road you need to travel right now.

If your balance is that bad, you should probably talk to your doctor about the use of a cane or what they call a Quad Cane, which has four feet on the bottom, to further help your walking stability.

Your doctor says he wants to do an LP.  I tend to agree with him.  He will be looking for inflammation in your spinal fluid.  I know that LP sounds scary, as it does for all of us that have had it done.  The only thing that bothered me was the numbing medicine they put in first (which feels like a bee sting) and the pressure in my lower back, from where they withdrew the fluid.  I understand now, that I could have had some pre-medication to help me, with my nervousness.  (now they tell me...geesshh)

The LP is always much quicker and much easier for the patient and the doctor if it is done under Fluoroscopy.  It shows the doctor exactly where he has to go and the procedure goes quickly.  Taking in plenty of fluids and laying flat for at least 24-36 hours, will hopefully keep you from having the "LP headache."  The extra fluid intake helps to balance out the fluid quicker, that was taken out of your spinal space.  

Now that I have been through the LP and it yielded answers for me, I realize that I was actually more afraid of the procedure than it actually was.  An LP is not a test that has to be repeated if they find what they are looking for.  So it's possible that you will only have to go through it once in your lifetime.

Please take some comfort in knowing that the members on the MS Forum will be with you, at every stage of your diagnostic process.  We have all been through it and it helps to know that there are others that understand.  Lean on us, talk with us, share with us....I promise you, you won't be sorry.  You never walk alone, once you have found your way to the group on the MS Forum.  

WE are here for you....

All the Best,
Dx with MS since 1996

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by MOJO39, Jan 31, 2009
Thank you for your warm welcome and encouragement! I did seem to have my Neurologist talking in half sentemces when he was talking to!  I kind of felt sorry for him.  I was at one time a CO2 retainer...I was dx with the COPD/empysema at age 36 due to starting smoking at 8!  Had a hsyterectomy and afterwards a nurse came in and I crashed and that is when they realized I wasn't breathing...and started the ball at looking at my lungs...they thought that might be genetic..but no...Just stupid...smoking..and bad lungs, and not stopping smoking until 4 years ago.  I guess I will try to be more assertive with my neurologist when I go in...but they don't want to pay for anything so they really don't want to diagnose anything.  He was so positive that the blood work he ran was going to be positive..when it wasn't he was shocked.  He did ask me if any on every tell me that my reflexs we slow?  I said "No" I really didn't even know what he was talking about.  But I read some more...I guess when they do that rubber thing to yout knee I didn't even know it...I didn't respond with the ping of the vibration tool...I don't know...stupid things..I dont really care...sometimes I would rather die, but the kids say no Mom...but I don't thinkI will the treatment I need.  I really wish I nver had this Optic Neuritis because I would have just gone on just living with this other stuff....and just left the doctors alone.  Sorry I am a little crazy to night....but I have a great sense of please don't take me to serious...
thanks again...sorry for yack your ear off!   thanks again..Michelle....MOJO39

749148 tn?1302860959
by fortywhat2, Jan 31, 2009
Hi Michelle,
NO, you don't want to die!!!  I sleep with O2, isn't it fun.  I wondered if it was my husband wrapping the tubing around my neck (joking) when I wake up all tangled up.  I was also a smoker, 33 years!  I have mild apnea, probably cause I'm fat.  Working on that!!!  Ok, LP... I had one in July, like Heather says... the stress is worse than the test.  You should have it done and request they check for Lyme disease also.  There are many people who test neg. for Lyme in their blood but shows up positive in spinal fluid.  Make sure they also draw blood the same day or the fluid is useless.  Drink lots of water before the test also... keeping well hydrated is very important!  And we will all be in that room with you... just think of all of us standing around, that Dr's gonna be real nervous.  You also want the correct MRI done, it matters.  Remember one very important thing, you are paying the Dr. they work for you!  Go in with a note book, someone to take notes, a list of questions that you or the person you bring is to ask, and NEVER let them try to intimidate you.  If they due just look at them and say excuse me I don't think I heard you correctly.  Keep writing it's good for you to vent, and we will listen!
~live as if all your dreams came true~

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