This Is MS Multiple Sclerosis Community: Knowledge & Support

(Edited on 10/14/12 to note that this thread was originally posted in April/May, 2011.)

Well, my first presentation (if I post this right) is a pic of the culinary creation I made for family Thanksgiving a year after my dx – Brain Jello. Bluesky gave me more credit than I deserve in another thread, assuming I must have prepared this educational - yet tasty - dish in the hope that my thoughtful gesture would lead my family to a better understanding of MS. But she was wrong. I did it just to freak them out.



(I switched to a smaller jello pic so it wouldn't overload the thread. :) )

And next, folks, this is how you get an 'overnight' MS diagnosis like I did - even before visiting a neuro (see pics below), with 'classic' lesions. My 1st MRI showed I had a Brain O' Lesions that are very typical of MS, even with no gadolinium (verified by spinal tap, VEP, SSEP). That's why it takes longer to get an MS dx if your brain isn't as cluttered as mine. I'm posting my recent set of MRIs (1st in 6 yrs), but to me they look almost the same as the original ones - even the giant lesion is still there (see jello pic of it also).













MRI Report 4-8-11 (only part of it):


Same report as usual. But I'm interested to hear my neuro's take on the term "tumefactive plaque" at my May appointment, or any comments from posters here. On research, it seems that if one is already dx'd with MS, tumefactive mainly means BIG. But it often leads to a biopsy when it's the only thing they find on MRI. In my very first MRI report, they just called mine "large."

Also anxious to get my neuro's take on "progression" with "no...enhancement," which may finally verify my claim that I've been slooooowly progressing for many years with no relapses = SPMS. She always insists on noting that I'm an RRMS patient.

One reason to post these online here, besides as an example of 'classic' MS lesions (or to vie for a prize in a Scariest MS Brain Contest), and to get input about "tumefactive plaques", is to encourage those who are incited to panic by doctors, drug companies, and even MS sites. Brain lesions don't necessarily correlate with symptoms, relapses, disability, or anything else.

Each of us is unique in our MS, and I still think that we're unique partly due to our own personal combinations of medical conditions. That's why we don't react the same way to drug treatment, CCSVI treatment, or anything else. IMO, MS can't possibly be a single disease that's shared by all of us. When it comes to symptoms, it's not always MS anyway.

And I hope this thread lends a bit of encouragement to newcomers. The day of my first creepy MRIs at age 52 and 'instant' dx, I felt stronger & healthier than I had in years, since I had developed a routine of healthy diet, strenuous exercise, sleep, music, and humor. Now, 8 years later, and after at least 38 years of MS, I use a cane some, but I still work full-time – sometimes 10-hr days. I admit that I'm VERY fortunate, but I can't say enough about the benefits of my routine. I've worked my ass off to keep myself mobile and I continually adapt.

Wishing better health, clearer MRIs, and plenty of laughter to all!

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

"And I hope this thread lends a bit of encouragement to newcomers."

This is my laugh of the morning.

Tumefactive Lesion = T.L. = Too Large

Yeah, bluesky, sometimes I don't say things exactly the way I mean them. I have brain damage, you know.

Ummm, I think I mean I hope that those new to an MS diagnosis who are panicking about the whole idea that they have BRAIN LESIONS understand that their lives aren't over - the brain is very 'plastic' and adaptable. And I hate it when people are incited to panic that they might be heading into the dreaded SPMS category. I personally feel much better now that I have Old MS instead of New MS.

Or maybe newcomers should be uttering a sigh of relief that at least they're not me.

I also forgot to add that I'm not unaffected by MS - I post and whine here all the time, so I guess I assume people understand that. And I've posted my history over & over. The whole reason I started my 'get healthy' routine was because I decided (20 yrs ago) if I was going to have to drag my leg around anyway, (extreme case of L'hermitte's, week of vertigo, etc.) I ought to make it easier on myself by losing weight and strengthening my muscles.

I didn't even guess MS, because my life was so full of weird, varied episodes that I couldn't even pick a doctor to tell about them - except the psychologist who dx'd me with hypochondria. An example of my life: during a week of crawling around the house with panic attacks & vertigo, no one even suggested taking me to the ER. Both my family and friends pushed me to a psychologist (my friend had to drive me there...my husband just stepped over me on the floor).

I'm always posting about how I chart my dozens of 'mildish' symptoms - quantity rather than severity - but I also have other medical conditions that account for many of them. So anyway, life with MS hasn't been easy, but I truly believe that my change of lifestyle made a major difference in my overall health and thus in my MS health, easing my symptoms rather than eliminating them, adapting to them one by one.

I still think that the best thing about my life is that I didn't know I had MS, so I didn't know it couldn't be fixed.

I truly wish good health and good humor to you all!

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

That is so great, regardless of why you did it (I love the just to freak them out aspect). Today of all days I really need a good laugh, and this has definitely helped!

I can sure appreciate what everyone is going thru. I am still in the being diagnosed stage, and euphoniaa I know you've posted on my thread. I do have to say though, that I would find much more comfort know what this is than not knowing. Then I would know the correct course of help. I could have MS, Parkinson's or Peripheral Neuropathy, I still don't know. All I know this is not betting any better.

Wishing you all the best!
Amanda

I've been wanting to post on the interesting lesion threads, but I've been in a power struggle with my computer lately and I'm usually no match for it. Today it's in a good mood, so I'm adding to my own lesion thread.

Anyway, I realized that my last brain MRI (from 2005) was missing from my CD collection and I wanted a comparison to take to my upcoming neuro appointment (and for this thread ), so I called hospital records and picked it right up today.

I pulled out a handful of brain slices that were close to the most current pics (from 2011) I already posted. Keep in mind that these are from 6 years ago, and my new pics were done on a brand new MRI machine.

Here's the report that goes with the pics, comparing them to 2004. Did I mention the brainstem lesions lately?

My 2005 MRI report - compared to 2004:


2005 MRI pics: (New CD format...still trying to remove all the writing on them.)

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

euphonia, i am curious to know if you experience pain from your brain stem lesion...
or any generelized nerve pain (but really pain more than neuropathy)

Hi Filmmaker,

I'm still fighting with my computer, but maybe I can get a message in. I really don't have any generalized pain or even nerve type pain regularly. The only pain I have is very specific to whatever else is going on like muscle aches after adding new exercises to my routine, bumps & bruises, or old arthritic joints... In Feb I broke a toe on my left foot. Now that was pain. For several weeks.

The only pain that might be from MS is the weird, occasional, screaming nerve spasm I described on another thread: http://www.thisisms.com/ftopict-13112.html

I tentatively dubbed that one "Recurrent Osteosciatic Spasmodic Twisty Nerve Syndrome" to give it more importance, even though it only hits me every few months for 5-20 minutes (had one 3 weeks ago, last one was in Dec). Even those are just as likely to be due to, or in conjunction with, HNPP (Hereditary Neuropathy with liability to Pressure Palsies). HNPP is characterized by a missing myelin gene, which means my PNS is demyelinating like my CNS.

HNPP link

Now for my question to you - how would anyone know whether a specific pain was due to a brainstem lesion? I can't pin down a single one of my dozens of mildish symptoms to MS, let alone to any specific lesions.
-
-

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

euphoniaa, have you seen our Facebook page about Tumefactive MS? We'd LOVE to have you join us! I actually just shared a link to this thread, because I thought it was so interesting. Hope you are feeling well these days!

If you want to join our page, just search for Tumefactive Multiple Sclerosis on Facebook!

Hi mclive,

I'm sorry it took me so long to answer, but I've been a little busy with work (full-time) and doctor visits lately (totally unrelated to MS) and I wanted to do a little more investigation before I responded. You're the first person who replied to the "tumefactive" content in this thread at all. Which was kinda like the same sorta non-response I got about the term from my doctors - even my neuro. In fact, I recently mentioned it to the surgeon who's reviewing all my records before he does a couple of procedures on me. When he pulled up my brain MRIs, I pointed out that one was termed "tumefactive." He shrugged it off with the response, "Myeh, I've seen bigger."

I think I've found your blog, though, where you've posted lots & lots of info and links about Tumefactive MS, but I have to say that I have not been diagnosed with it. Although my MRI report notes a "tumefactive lesion," in my case (as I reported above in the thread), that just seems to mean it's big, and it doesn't appear to have any other unusual characteristics, no enhancement, very little change over many years.

I read much of the info on your site, but didn't click on all your "source" links, however, because they don't show what sort of sites they're leading to; I don't click unless I know whether links lead to Research Journals, commercial sites, personal blogs, etc. I crashed my brand new computer by doing that and had to have it rebuilt.

From my own short research before, it seemed that Tumefactive MS as a 'diagnosis' was synonymous with Marburg variant MS, which is extremely aggressive and thus, it's possibly a different disease entirely. In contrast, your more extensive research has uncovered much more treatable and manageable versions of Tumefactive MS. It’s great to hear that!

Considering that I’ve likely had at least 40 years of mildish, slowly progressing MS, with many other lesions showing ‘classic’ presentations, I don’t seem to fit in there anywhere. But I don’t know either. I still can’t figure out why my neuro calls me RR when I’m only progressing. Don’t care, though. I can’t identify a single incident that I can name in 40 years as an Official MS Exacerbation. Don’t care about that either. Don’t know why it matters to officially name them.

Best of luck to you. Feel free to go ahead and post a link to your blog here or add information, since this thread may attract others who are searching for info.

And I'll end with a couple of links & quotes from them. I offer major apologies for resorting to Wikipedia for info, but this is what people are getting when they google Tumefactive MS. Feel free to correct any misinformation.
http://en.wikipedia.org/wiki/Tumefactiv ... _sclerosis



My lesions didn't lead to biopsy because every other test led to plain ol' MS instead.
And about Marburg from Wikipedia:

http://en.wikipedia.org/wiki/Marburg_MS



And this is from the British Journal of Medical Practitioners:
http://www.bjmp.org/content/tumefactive ... -sclerosis

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)