I would like to converse with some of the 10% of those with MS that have no typical lesions usually seen with MS. How long did it take to get a diagnosis. etc.
Back in 2000, I had optic neuritis but no brain lesions. At the time we did not look at my neck. In 2005, I had an attack which involved my arm/hand and we looked at my neck. One large and one teeny tiny lesion was found. Still no brain lesions.
I had to wait until the teeny lesion grew and another showed up before getting the official diagnosis. My lesions are typical but I don't have too many of them. The ones in my neck have grow together to form one large one (mostly) and the brain still doesn't have any large lesions to speak of.
I'm not in that 10% group, but hopefully this will give you an idea of how long it can sometimes take for MS to develop. If they had looked at my neck in 2000, I might have been diagnosed sooner. But then again, I might not have. Can't know for sure.
Hi , my name is Sheila .
I was dx'ed with MS ( RRMS ) on July 26 th , 2010 @ Wake Forest University Baptist Hospital in Winston-Salem NC . I have no visible spinal lesions within the cervical spine on my MRI's . However the left parietal lobe is is totally riddled with WML's .
The University of Virginia stated " You have a clean spinal chord so therefore regardless of the numerous bilateral brain WML's we do not feel you have MS . " My point is never stop trying to establish or ingnore your clinical symptoms . They are a warning flag , listen to your body and advocate for yourself .
I did not even realize I had an illness til one evening I was feeling "funny" hot , tired , fatigued and slightly sick to my stomach . I laid down to nap . When I awoke I popped out of bed to only fall flat of my face , loosing control of my bodily functions , and my right leg numb and tremendous lower back pain .
So please listen carefully to your body , I wish I had years ago . Advocate for your health care and never dismiss your physical well being .
Remember you have MS , MS does not have you ,
My lesions were not the atypical ones, for a very long time, but, now, after 10 years, I have a firm diagnosis. It has been hard, and my family doc was so good to me, and has treated me with IV steroids when I could not function...Needless to say it has been a long 10 years...lots of docs, lots telling me I am crazy....etc...
Fortunately there are good docs out there, however , at times hard to find. I have not gone to the presribed meds, for MS specifically, as I have alot of pain, and have a morphine pump. One thing I do know I have heard and have been doing , is Vit D3 with magnesium, and Omega 3 oils, low gluten diet and no dairy...Hard, diet. but have heard it works. I do not one any more steroids, some peole do fine with them, I am NOT one of them
My prayers and best to you as you take this journey...And that is exactly what it is...a journey...and I have had alot of good come out of this one, difficult as it
Hope this helps
Thanks for your reply. I have been diagnosed since dec 99 and I took the diagnosis very well. I have worked thru all of it until 1 1/2 years ago when I finally gave up work as a nurse. I was even using a wheel chair some days at work. I had to buy a disability van and electric w/c to get back to work after nearly 12 wks off.
I have taken all this well until recently. Now I am getting mad and shedding a few tears. I guess the new pain is causing my distress right now.
Prayers to you and your family.
Connie, ( that is how my name is pronounced)
So you were diagnosed even without the lesions? Wow, that is amazing!!
I worked through the pain, like you since 98, 3 years ago, I hit a wall. Physically. The depression started when I was 32, and that was after what I think was my first true exaserbation, but, we had no insurance at the time....afterward I was left feeling okay, but very depressed. I sought out help for years, after I awoke again, 7 years later not being able to see or walk. My lesions were not normal, so no diagnosis...
anyway, I am repeating myself....so many MSers say they have huge pain, but my Neuro says MS does not cause pain...just weakness and fatigue. How can they say this with so many saying they have it?
I admire your courage and strength to continue work as a nurse. That is amazing. I thank God for my power chair.
Have a great day.
Oh, Koni--You need a different Dr. THere issssssss pain as alot of us know well enough. My pain has gotten worse over the last year. I take pain meds that helps some. Thanks for responding.
Yes, I got a diagnosis after 18 years with no typical lesions and then I had to use the most powerful MRI in the state to show those.
Have a great summer and above all KEEP COOL.
Oh, I got a cooling jacker, wrist bands, cooling cap for free. I think I found the MS site here to apply.
I have been told that they don't see any lesions. It has been 3 months I still have the symptoms and no official diagnosis. I have been told that it is probably PPMS But like i said not officially.
Primary Progressive? Oh, I hope not. Be patient it took me 18 years of wondering. Sorry it took me so long to respond.
Have a great summer.
The only suggestion I can offer is to do research online showing where other Dr's have said that they have diagnosed MS by eliminating all other diseases. I would makecopies and show to your MD.
I have read many places that have shown this. Go to MS sites etc. to get this info.
I wish you luck.
Hi Connie, I've been told I have lesions that "are not typical" for MS. One on my cerebellum, two on the top left part of my brain. None in neck. I do not have a firm diagnosis at this point. the lesions were discovered 2 years ago when my vision went blurry and double. I also couldn't walk more than a few yards due to weakness during that time. Had a round of steroids at that time. It took about 1 year after that biggie event to plateau. Symptoms still come and go, my vision and balance are at a point where i've learned to adapt to certain things. I haven't developed new lesions at this point so still do not have firm Dx. Things preceded this for years that i now know are linked to this.
So still in limbo...
Hi Suz--Sorry it has taken me so long to respond. With your lesions and vision problems what is their problem. You should be on the MS drugs now to keep MS at bay. I've ben on them for 5 years and I continue to get worse but I keep doing it. Might be worse without the shots.
Are you at liberty to seek out another Neuro.
Hi Connie...that's okay - thanks for reponding - time is flying by this summer. SMy doc is my 3rd neuro and 2nd "MS specialist". I'm in Vermont. They have alot of MS cases up here. I haven't developed any new lesions since the first big event and the others remain the same. The one large one on the cerebellum causes the persistant balance vision issues. Fatigue and overdoing it (I use that word lightly because most things can at times feel like overdoing it and that's not normal) - anyway - doing that causes my eyes and balance to worsen. I've heard such varying suggestions in my case re: the drugs. I have to say I often wonder if it the fact that I am on state supplemented insurance gives them pause to give me a diagnosis. I work - I've always worked - My employer doesn't offer insurance to me, but that's a whole other bag of apples. So i'm on this insurance that the state offers which is a sliding scale based on salary which is a HUGE blessing. I'd be homeless living in the woods with the medical bills if I didn't have it. But sometimes, I think the doctors might be hesitatant due to that to proceed with the dx and the expensive pharmaceuticals? There i've said it - but any thougths?
and then in all fairness, i've also heard that they decide in a case by case basis. Since my case is "atypical" due to placement of lesions, my spinal tap results were negative, etc, etc. that they might be hopeful this actually might be a one time event. but it doesn't help much because i live with certain disabilities due to the lesions every day. there i've said that too. That's a hard word for me to say. so as far as a new neuro, I'm seeing a really good doc that's also MS specialist and feel she's just stuck in the ambiguity of what it might or might not become too. Honestly I really don't know and have no real answers.
Thanks so much...