NF2 w/BT history and Multiple Sclerosis...anyone else out there like me??

[MSBTGrl]

Hi there, I am new to this forum and am thankful to know there are forums out there like these for patients. I have an unusual medical history and am looking for others who may share my situation or maybe there are those in the medical community who would like to comment. Wil try to keep it short although its rather a novel for sure lol Its weird to even think its my life when I start thinking out it, dare I say a Lifetime movie? lol
In 1995 at the age of 23 6 mos after giving birth to my 3rd baby. I was diagnosed with a rather large acoustic neuroma (3CM)after I started experiencing sudden headaches which became excrucuating rather quickly for about a week straight and strangely, no other symptoms.Had it removed that same year and although I had some defecits and emotionally challenging I was making headway. Then in late 1997 thru a long series of events found out I had
meningioma (totally "fluke" finding wish I could tell the story, think Life time movie lol)Had that removed and a short time later started having various symptoms not normal for me and over the course of several years and an exhausting journey found out I have mutiple sclerosis. After my diagnosis my long standing suspicions of having NF2 were confirmed by a MS dr at USC MS Clinic.
Let me say, I have been to the Valley of the shadow of death just within the time I got the MS diagnosis and am wondering if there are others out there like me or not. I have been told that brain tumors and MS can go together and given how my own journey has gone I see how it could but have yet to find anyone personally who has gone thru this.
I can only sum up this post with saying Gods grace is amazing and though I have many chalenges today I have to always remember that given where I was in 1995 to now. Pleas feel free to ask questions both here and privately.
Best Regards to All,
Lisa

Hi  Lisa and welcome.  Had to remove your email address as public posting of personal contact info is not allowed for your own privacy protection. Folks can Private Message (PM)/email you here where you can share behind the scenes.  Thanks for understanding! Phyl

[Peggy Sue]

Lisa ~

I have an aunt who has NF2 and while I developed a fast growing right side acoustic neuroma they do not believe I have NF2.

I'm responding to your post as someone who was diagnosed with MS about 16 years ago and developed a tumor. I'm not on any of the 'big gun' drugs for the MS and deal with it through nutrition, exercise, vitamins and herbs. With regard to the MS I am fully ambulatory and not in need of any assistance devices. The tumor was found when an MRI was done by my MS neurologist as we thought the imbalance and other problems I was experiencing were caused by it but voila, tumor.

Again, my tumor was growing quickly and I had surgery to remove it 3 moths after it was found and the surgery was thought to have gone well. Seven weeks later I slammed into a wall of pain, many things were tried, none of them worked and two and a half months later I had a second craniotomy to try and rectify the situation. During the second surgery they removed the cranioplasty (which turned out to be rough on the underside and 'snagging' on my dura every single time my brain shifted), ground down some bone and closed me up with no cranioplasty. Things were great for 10 weeks then I slammed into another wall of pain. Since mid-January 2012 I've been in 2 separate and distinct types of pain - intra-cranial pressure and occipital nerve. Many tests, MRIs, and multiple doc consults later we found a neurologist who has been able to temporarily deal with the intra-cranial pressure pain via a DHE drug protocol. He has yet to address the occipital nerve pain but I see him this Thursday and we'll address this issue. It will be my first appointment since leaving the hospital after the DHE deal. He has said he wanted to address one issue at a time so we're 'on schedule' I guess.

One of the ongoing questions I've had since my case has been anything but 'textbook' is, "How much, if any, of my continuing issues can be attributed to or are being caused by the MS?" None of the many docs in any of the specialties I've seen have been able to answer with anything more than an 'I don't know.'

PLEASE KNOW THERE ARE PEOPLE OUT IN THE WORLD LIKE YOU AND WE CARE ABOUT YOUR STRUGGLES!!!

Peggy Sue

[MSBTGrl]

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!   )

Best regards,
Lisa

Lisa ~  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. 

Jim

[nftwoed]

Hello, Peggy;

   I've never heard of, or read of a relationship between NF-2 and MS. It may or not be a coincidence?! It seems likely some of the secondary effects of NF-2 may be similar to those of MS or diabetes, but still no direct connection that I'm aware of.
   I did spend some time with the Medical Genetics Dept. at Mayo and also a Neurologist. It's easily seen there's much to be learned about NF. NF-2 was not even named as a disease until 1993. It took completion of the human genome map and the separation of NF-1 ( Von Recklinghausen's Disease on chromosome 17 ) to NF-2 on chromosome 22.

[Susan A]

Lisa,
you say your NF2 was "confirmed by a MS dr at USC MS Clinic". Have you seen an NF2 doctor? Generally other docs just don't see enough patients with NF2 to really know what they're talking about . . . and many MS symptoms are similar to those seen in NF2 patients from what I understand. There are some good docs on the west coast, but I know people who still travel to NIH in MD to see Dr Asthagiri. NIH will pay your travel costs to see him if you have a confirmed diagnosis of NF2 and you are accepted into the NF2 study.
It must be so frustrating to have not one but two major diagnoses :-( Best of luck in your search for some answers!
Susan

[Peggy Sue]

Lisa ~
Hope everything goes well with your tonsillectomy and that the biopsy helps the docs help with the infections. Yes, they can cause 'issues' with the MS. No, the occipital nerve pain is not MS and absolutely caused by the Retrosigmoidoscopy to remove the tumor.

nftwoed ~
None of the many docs I've seen, nor the National MS Society feel the MS and the tumor had/have anything to do with one another. Apparently I just got to be one of the lucky ones that got both. Thanks for the info.

Happy Valentine's Day!
Peggy Sue

[Karenkay]

MS is an old friend.   I was diagnosed in1989 at the age of 29.   My MS is "stable" but I have moved from relasping/remitting to secondary / progressive.

I was just diagnosed with a 1cm schwnnoma in January.   I was referred to Dr Marlan Hansen U of IA and he advised surgery.  Yesterday I saw Dr Michael Link at Mayo and he advised Gamma Knife.  I am leaning towards GK because recovery is nominal compared to having open skull surgery. 

Then there is also the fact that I have MS and no one is willing to try to guess how surgery and recovery will affect my MS.