New MS

[lilly608]

Hi All - I am new here too to this particular forum.  A few years ago, the women on the ovarian cancer forum were some of the best people I have ever met!!  I did not end up having it, but did experience many, many of the same symptoms and ended up with a total hysterectomy - with a very frightened doctor when he finally got in there and saw all of the benign disease that I had been "complaining" about!  

Anyway, I really hope that neurologists are not dissing women too!  I have recently been dx'd with MS - first opinion, but I really like this neurologist.  Now I go to NW in Chicago for confirmation and treatment by a University hospital (he felt it would be best being at a bigger hospital that he trained at, which I am good with).

So I am waiting, waiting.  I do have SO many comments/questions and will be asking away very soon so I hope that you all are "patient" with me.  One thing for now:  I do have the PPMS - it seems per the first neurologist - type of MS, but probably had the RRMS several years ago - gone undetected.  However, at this time, there is only one lesion in the brain; this neuro says that the placement and size are exactly that of a MS lesion and since our visit was about 1.5 hours (at least) long, I feel he took a very, very good history of me and feels quite confident.

So what do you think about just the one lesion?  I also have questions of going all of this alone - doc visits, treatments, driving, etc.  My husband - well - never mind.  Although I have many things going on physically and mentally with the MS, the optic neuritis is very bad; I lost the center vision in my left eye permanently 18 years ago (no one knew why of course), but two years ago the eye became very tender, sore and the vision is bad and blurred now.

I look forward to lots of discussion!

[lilly608]

Thanks to all of you for welcoming me; same as when I was on the other forum a few years ago.  Just the most incredible people out there - and go figure - strangers!!!  Hopefully not for long!

I had sent a message to Quix(?) because I read her journal and she had so much great information, but I have not heard back from her.  I had a very personal question for her, but I am sure any of you can help me with it.

Did any of your family members and/or friends deny you your illness?  As I said above, I have been to hell - and well, I am not back yet!  Three major surgeries in one year:  cervical disc fusion, total hysterectomy, and lumbar laminectomy all in 11 months!  All surgeries were somewhat successful (the hyster for sure), but I still suffer with lots and lots of back issues and need another back surgery, like now.  However, I am not rushing into anything until I  see the MS doctor; I am so anxious to see how much of my pain is derived from my DDD (degenerative disc disease) or the MS.  If I can at least walk a few blocks again without my muscles totally going into spasm with the MS treatment, I will be thrilled!  If I can put on my socks and shoes without my diaphraghm (sp?) going into spasm, I will be thrilled.  If I can go the day without napping 16 hours of it, I will be thrilled!!

Anyway, I am having a very hard time with my family; after all I have been through, they just do not believe me - that I could have this disease.  Now, I ask:  Did I really want all of those surgeries, do I really want to be sick, do I really want to be the crappiest mother I can be?  No, no, and no!  What is with people who think one does not have what the doctors have told me?  Why - on top of everything else - have to defend my position of being sick?  After my lower back surgery, I was SO out there - I walked and walked and walked, and I became active again; I danced, I entertained, etc.  But it was short-lived until it began to bother me again, and then came the symptoms of the MS very bad - about two years now.

So again, I ask, have any of you experienced this ignorance?  I realize that it is hard to believe everything I have been through and I am only 47, and believe me when I say that stress has been a factor in some of it, but who the heck is not stressed these days?  I can handle it, mentally, if it weren't for the physical part; that - I cannot handle and that makes me crazed!

Also, I really do have to go it alone since my husband cannot (or will not) go with me to the doctor.  It is a very lonely state of affairs sitting there by myself getting news like this from both the optho neuro and the neuro!  I have always been there for everything of his; I have managed his entire health (or unhealth, I should say) from making appointments to getting him there and way beyond!  He sometimes could not believe all I did.  But he is in a bad way again with his back - um, like I was when I was crawling up the stairs before my surgery but still taking the kids to school, blah, blah.  Oh, I won't bore you with any more of my loneliness woes.........  Just how should I do this on my own?

Thanks again to all for any help and guidance you can offer.  I told you I would have lots of comments/questions!

God speed to all, and may you all have peace!!  

Lilly

[Lulu54]

Welcome to the group here.  I think tht you will find the company here pleasant and the answers you receive will be accurate.  I'm sorry you have Ms but keep it in mind that it could always be worse.  But from your history you aleady know that.

One lesion?  That means one lesion that you can actually see with the current MR technology.  If I remember rogjt. tjere are abpit 15-20 lesions tht are "invisible" for each one tht can be seen.

I hope we will see you around - we love to help wit hanswers from our own experiences.

best,
Lulu

[anon07072023]

Hi and welcome to the forum. I'm glad that you posted this on the forum. Because I had read it on the other post that you had posted it on initially and I thought it was going to get lost there and no one would see it.

I have a diagnosis of RRMS. However, I think I have PPMS.  My symptoms started about 2 1/2 yrs ago and they've never stopped. They're just progressively getting worse. I  have about 6 lesions in my brain and maybe 3 lesions in my spine, and 3 T1 black holes in my brain. Like Alex said, very few lesions in your brain is very typical of someone with PPMS.

Ask away....

Take care,
Kelly

[HVAC]

Welcome.
  PPMS does not come out of RRMS it starts as PPMS and may take many years, even decades to be that apparent. Most MS is called RRMS at first since Neurologists follow you for at least a year before they decide it is not RRMS but PPMS. Fewer brain lesions is classic with PPMS. I have had it my whole life and I have three brain lesions.

I was told PPMS is the subtle MS that is why it is harder to identify. Mine started in childhood. There are quiet a few folks with PPMS on the forum.

Again welcome.

Alex