Annie, I'm sorry to hear of what you're going through, but please take some comfort in knowing you are not alone and that there is a lot of good help and support out there.
Not too long ago i would worry that what would happen if i had a relapse? What would i tell my employer? Would i be able to make an income so i could support my family? All good questions that anyone with any chronic disease i'm sure would be asking themselves. But then one day I woke up and there was this calm. I came to the realization that worrying about
it will not change the future and i came to the conclusion that i'll deal with it if and when that time comes because worrying in one form or another will eventually consume you. What is particularly hard for me is that there aren't any answers, I'm accepting of the disease but i'm not accepting of not having answers to my questions. So in the mean time, social media, lectures/seminars and an overall gain of knowledge is my fix. So you are on the right track ONE DAY AT THE TIME.
Try getting involved with your local chapter of the MS society. Its nice to talk to people face to face that share the same disease as well as the MS Society can provide you with some great information about
the disease, financial help and will be there for you when you need them to be.
I made the mistake of picking my MRI disc up at the hospital two weeks ago instead of just letting them mail it to my neuro. Then i started to contemplate
opening the CD to view the images. AND i
opened the cd..lol You could probably imagine what was going through my mind when i saw that big sucker. I wish my wife was at home to have seen what i looked like because i probably turned 50 shades of white. My grandmother had Leukemia and my Mother had melanoma (she still alive and well thank God) First thing i thought was HAVE I BEEN MISDIAGNOSED? Is this a tumor??
So after composing myself i called my Neurologist and bumped my appointment sate up form May 29 to the 22nd and emailed her the images.
So i took the 2.5 hour drive to my Neurologist on the 22nd. She reviewed the images right in front of me from the CD itself (images on the cd are a lot better quality and you can actively change the picture contrast). She reassured me that it wasn't any other condition that I had brought up to her (lyme, hughes syndrome..ectect) But she did say it is fairly hard to differentiate between CNS Lyphoma and MS but reassured me that it is in fact MS...concurring with the radiologist. She made note that Lymphoma pushes on the brain and has fluid that can be seen by a trained eye around the lesion itself. As well, in my smaller lesions i have what is known as dawsons fingers, which describes the shape of the lesion that is only found in MS. Not to mention i am not symptomatic of someone who would be ill with CNS lymphoma.
So then i asked her about
Tumefactive MS and she wouldnt necessarily say if I had it. From my understanding its any MS lesion that is greater than 2cm..so i think i pretty much answered my own question. She did say, though, that most people with Tumefactive MS tend to respond better to treatment then to people who don't have it. She also did formally diagnose me with RRMS. Since it was a different Neurologist who made the initial diagnoses of MS, the only thing she has sent me for was some more blood work to see if there are any o-bands in my blood serum (she could not confirm whether my previous neuro had done this) - which i went and did today.
The good news. No lesions on my theocratic and cervical spine and the MRI showed no active lesions when it did it's imaging with contrast.
I have great faith in my Neurologist who specializes in Multiple Sclerosis. She worked along side Dr Freedman http://www.ohri.ca/profile/msfreedman
and was directly involved in the Canadian Bone Marrow Transplant Study. Alsohttp://www.ohri.ca/newsroom/11092004.asp
She also spent many years working at the MS Clinic at St Mikes under Dr Selchen, head of neurology at St Michaels Hospital in Toronto
I consider her to be one of the most knowledgeable Doctors in Canada about
this disease She takes the time to speak with her patients about
how research is progressing, current and up to date hypothesis about
how they think the disease may start and new treatments that are not yet on the market.
Tomorrow will be my 30th injection of Copaxone. I commenced treatment approximately 2 weeks after this last MRI. I will be going back to see the Doc on Aug 21 for a follow up at which time she will make a requisition for anther MRI to see how well the Galtiramer Acetate is working.
ALSO, i have had chronic ear pressure, headaches, sinus pain, an abnormal amount of mucous and an on again off again unsteadiness since Sept 2014. After having 4 Neuros tell me this isn't a symptom of MS i finally had my GP make a referral to an ENT and my appointment for that was earlier today. He chalked up my symptoms to being TMJ http://en.wikipedia.org/wiki/Temporomandibular_joint_dysfunction
whew..i think thats it for now