Hi Peggy Sue,
Thank you so much for your reply. First off I want to let you know your closing words meant alot. I have yet to find someone in my shoes especially with having 3 neurologic disorders and its very hard to know if what Im deailing with is "typical" athough nothing thats happened with my brain tumors or MS has been typical! Sounds like we have that in common!lol
Its been such a long road and now am facing some new issues which Im finding difficult to find answers. I took Novantrone (a chemo and not typical for MS'ers as a treatment) for the MS due to my MS being a rare type (see told you Im not typical lol) My flares cause paralysis and other symptoms and although Ive stopped and one longering problem which started while on the chemo is chronic throat infections since 2003. My drs have never really gotten to the bottom other than to treat with antibiotics..its a whole long story and for another time because not really why Ive posted.
To answer your question about the BT's and MS correlating, In my opinion, I believe they do. I have had 2 neuros who have confirmed although even if they didnt I would have to disagree again due to my own health journey. Simply my AN was in 1995 (didnt have typical sxs led to dx) and the meningioma was found in 1998 by accident during a surgery to sever my balance nerve they thought was a problem from the AN surgery. I had relief and was able to be a mom to young kids and a wife for about 8 mos or so and then began to start having strange sxs which were explained to various other things. It took me until 2002 to get an actual MS diagnosis. Unfortunately it started off bad because the first neuro I saw who said point blank "You dont have MS." I guess he based it on my not having "typical" sxs, however he was going by old guidelines drs looked at (again in my opinion) because I did research back then about MS and remember thinking other than what my MRI said I didnt have the normal sxs if you went by a list going down. I also think it probably thew the multiple drs I ended up seeing over the several years I did for a BT patient to have MS. However it doesnt take a rocket scientist to know that when a radiologist who puts "possible MS" because of "white spots on the brain" (not previously there) to at least look into it. I remember after getting my MRI results paperwork googling "white spots on brain"and also going by what sxs I was having many results all pointed to MS. There wasnt alot of info though so I didnt know what to think. Nonetheless, this neuro refused to do a spinal tap so I nievely figured at that time I it was unlikely I did. Its unfortuante for me that none of the numerous drs I saw ever questioned or brought up these white spots so I think I became so focused on getting a dx I kinda forgot about them.
Now I cant obviously say the MS was caused or started due to the anesthesia from the surgeries as my AN surgery was 14 hrs. Ive read that we have MS in our bodies already and something triggers it, so the trauma from the surgery/illnesses and/or anethesia would explain it. Couldhave been because I had the 2 tumors so close together and my body reacted somehow, or as my drs have said that it does happen that people get both and it cant really be explained. I do think for the body to start basically fighting against itself would have to be caused by something, and also because I have no family history of either MS, BT's, or obviousy since no BT's, NF2. Again my drs have said they can go together but other than you, I have yet to find anyone personally who has but I have come across info online which says it can. Although I know you said you dont have NF2 I was told its not always easy to dx someone with it until things sort of "play out" although hopefully you dont.
I was wondering though as I read your story have the drs figured out if possiby your occipatal pain is from the MS? I have chronic pain in my spine and arms and legs and have read its a common sx as things progress, but obviously it very well could be from your surgery. I do know I had headaches for several years after my AN surgery and found out that it was most likey due to bone dust left in the surgery site. Partly because back then they didnt know it could cause that and did meet other AN'ers thru the ANAUSA organization that it was a somewhat common issue but I think they have come a long ways and not even sure now if its even an issue for people since they realized bone dust left in your brain could cause issues...it seems very obvious that if you leave something in there like that its gonna cause issue, but what do I know?lol I also had an unusually large tumor, 3CM. Especially for only being 23yrs old however I have read that pregnancy hormones play a part in the super fast growth of brain tumors and I did have 3 kids close together. Again who knows but that whole situation was not typical because I had no hearing loss until my surgery but started having terrible headaches, which were first attributed to "stress." I would have thought so too as I had 3 kids under 6, but as it played out thankfully I had a dr in the ER who did an MRI when I went in for the headaches which became excruciating very quickly. Not sure how that would have played out but because of the circumstances that was the last thing my dr would have thought and was very surprised. I have the same GP, just think how he feels now having everything Iva had lol
Ive noticed your post is the only one so far though I am hopeful there are others out there who will read my post.
I am 40 now and unfortunately with this new issue which I am hoping to get resolved soon as they are going to take my tonsils and an area I have had a growth on in the back of my throat.Ive wondered if this growth is related to the NF2, but also could be a long term side effect from the chemo since thats when I first started having problems with these infections. I think I mentioned in my post that I have discontinued the chemo several years ago, I have read there can be long term effects.They are going to do a biopsy as well which I am interested to find out what it is and hopefully will resolve my infections. Of course as you probably know and maybe have experienced, infections cause your MS to worsen so this is an issue for me as well.
I do hope you get answers and have found that you have to be determined to get answers if your drs arent listening or giving you answers. I hope this is not the case for you and please keep me posted as to how things go. I will certainly be coming here as much as I can since I had forgotten this site was here and plan to do a lot of reading lo. l Sorry if I jumped around a bit, I'm re reading it and maybe it will be confusing, hopefully not!
LisaLisa ~ Per our posting rules I removed your e-mail address from your message. You can us the PM system to send Peggy Sue your e-mail address if you choose.