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Has/is Anyone Dealing With A Diagnosis Of Tumefactive MS?

A MyMSTeam Member asked a question 💭
North Phoenix, AZ

I have recently been diagnosis with Tumefactive MS. I found this out after reviewing my own MRI. My neurologist explain it to me in a very simplified manner. It was summarized with "we'll watch you more closely because your MS is more sever." There is very little information I can find on it because it is so rare. Only .1% of MS cases are Tumefactive MS. Right now I am not having any difficulties but what does it mean for my future? Any information shared regarding this would be tremendously… read more

April 26, 2013
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A MyMSTeam Member

I've never even heard of tumrfactive MS. It's not even mentioned on the NMSS website or in any of my literature or anything that O hand ever read. I guess I have a new term to Google.

April 26, 2013
A MyMSTeam Member

No I haven't heard of it but we can talk if you want, I was diagnosed at age 20. I am 32 now but can relate to the "young" part of figuring all this stuff out. It wasn't until about 4 years ago that I learned more about the natural ways to deal with stuff. I'm trying to compile some of my most useful links on msdiagnosis dot info

May 20, 2013
A MyMSTeam Member

Amy -- can you define and explaine what exactly tumefactive is and wat an active tumefactive plaque means -- have not been able to get a full scoop on this term -- OK thank you lucy !!! -- now I understand I am not alone -- just diagnosed last month with this problem labeled MS after a frightening bout of optic neuritis causing blindness in left eye - MRI results were abnormal showing innumerable lesions some labeled as large with restricted diffusion, mult. plaques, one labeled as a large active tumefactive multiple sclerotic plaque - and mult. abnormal T2 signals through out brain and white matter - Still in shell shock -- but some things are beginning to make sense - have had problems of feeling easily fatigued for years but forced myself to push through it - I am now 61 will be 62 in June so thought it was part of working full time at a stressful job and normal aging process - problem of fatigue has gotten worse the past couple of years ((however I was also dealing with a bad right knee and right hip which I injured in a fall almost 3 yrs ago and thought pushing myself at work to walk on injured leg was stressing body out - I am a nurse so I am on my feet most of my 8 to 12 hour shift - I had Hip replaced last Dec. 2012 and thought most of my problems would be resolved)) - when I got home from work at 2 pm - I often felt so sleepy I could hardly keep my eyes open and felt so tired and exhausted if I did not lay down for a short nap of an hour or two I felt weak / unbalanced and almost physically ill - I would then crash in bed around 8 pm sometimes a little earlier to get up at 4 am and start day all over - thinking things would get better once hip and knee injuries were repaired - My family complained that I was sleeping too much and needed to get more involved in activities to keep me busy - and did not understand my fatigue was not just feeling tired but a bone deep exhaustion that made me feel physically ill - When I would bring this fatigue up to my primary care physician on routine visits I was told it was probably just mild depression and he would order valium if I felt it was necessary - NOT!!! I did not have a depressed bone in my body - always been a upbeat person - I just felt exhausted by normal daily activities - I was referred by neuro- ophthalmologist to a new neurologist specializing in MS who I will see next month will have to ask him about medication Provigil

April 27, 2013
A MyMSTeam Member

When I put my chin to my chest

December 19, 2023
A MyMSTeam Member

My diagnosis was swift and easy. I had a sore neck after traveling, so I saw a chiropractor. He scraped something down the outside of my foot and apparently I had the Babinski reflex which is a backward reflex. In a normal adult when that happens, your toes should point down but mine pointed up. I also had Lhermitte’s Sign. Quintin to the chest gives you an electrical sensation in your spine. Came home to doctor had an MRI and had many active lesions. My doctor said they don’t do spinal taps anymore. MRI is enough.

December 19, 2023

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