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Old 02-14-2007, 06:40 PM #1
pantos pantos is offline
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Default Think you have mild MS that doesn't need treatment?

Don't be so sure that any and all efforts shouldn't be made to avoid future disability just because you are benign right now or even at 10 years - a large portion of this 'benign' group progressed at 20 year followup.

Neurology.
2007 Feb 13;68(7):496-500.

Longitudinal follow-up of "benign" multiple sclerosis at 20 years.

Sayao AL, Devonshire V, Tremlett H.
Department of Medicine (Neurology) Room S159, 2211 Wesbrook Mall, University of British Columbia, Vancouver, BC V6T 2B5, Canada. tremlett@interchange.ubc.ca.

OBJECTIVE: To evaluate disease status after 20 years in a cohort defined as "benign multiple sclerosis (MS)" (Expanded Disability Status Scale [EDSS] score </= 3) at 10 years from onset. METHODS: Patients with an EDSS score </= 3 at 10 (+/- 1) years from onset were selected from the British Columbia MS clinic database. The 20-year EDSS score was the primary outcome. Potential risk factors differentiating those who "continued benign" (EDSS score </= 3.0) from those who were "no longer benign" (EDSS score > 3.0) at 20 years, including age at onset, onset symptoms, and 10-year EDSS score, were analyzed, and lower 10-year EDSS score cutoffs were investigated. RESULTS: Twenty-year EDSS scores were obtained for 169 of 200 patients (84.5%); of these, 88 (52.1%) continued benign, but 36 (21.3%) progressed to require the use of a cane (EDSS score >/= 6). Conversion to secondary progressive MS occurred in 45 of 196 patients (23%) with a relapsing-remitting onset. The only variable associated with disease progression at 20 years was the 10-year EDSS score (p < 0.0005); no 10-year EDSS score seemed ideal in predicting benign status, and an EDSS score </= 2 resulted in 32% becoming no longer benign. Discussion: At 10 years from onset, neither an Expanded Disability Status Scale (EDSS) score </= 3 nor an EDSS score </= 2 adequately represented "benign multiple sclerosis (MS)" because an appreciable proportion of patients progressed in disease severity. Appropriate and reliable criteria to identify which patients with MS remain with mild disability over the long term have yet to be determined.

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_DocSum
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Old 02-14-2007, 07:38 PM #2
Harry Z Harry Z is offline
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Quote:
Originally Posted by pantos View Post
Don't be so sure that any and all efforts shouldn't be made to avoid future disability just because you are benign right now or even at 10 years - a large portion of this 'benign' group progressed at 20 year followup.
I've never really believed in the term "benign" MS. The disease is so unpredictable for everyone that it's almost impossible to try and determine what is a good course of action or not.

For 20 years after her first attack, my wife had few if any problems with her MS. She took nothing for it because nothing was available. Then it came back one morning and slowly progressed to SPMS within 5 years. Had any of the current drugs been available and she used them, her 20 years of success would have been attributed to the drugs. You just don't know with MS and each person has to make an informed decision as to what course of action they want to take.

Harry
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Old 02-19-2007, 01:07 AM #3
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Wow, this is news to me. I have had MS since I was diagnosed with RRMS in 1993. Since I have a low disability number, I would probably currently be listed as someone with benign MS. I had the impression that the first 10 years was pretty indicative of what will most likely happen in the future. I did have a couple really bad MS attacks early on, with lots of vertigo and coordination problems, but they didn't last too long. This new study is pretty scary since the disease sounds even more unpredictable than I thought. I'm praying that the significant amount of dietary changes I have made (particularly gluten & dairy free eating) will help. It has helped me to feel a lot better in other ways, so that's good at least...
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Old 02-19-2007, 09:09 PM #4
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jennyj, if you are not on any of the ABCR's you might want to do a lot of reading and thinking. It is a personal decision for everyone.

I had MS for at least 25 to 30 years before even getting a diagnoses. So, obviously mine was mild and would have definitely been referred to as benign (if there is such a thing). However, there came a time when it was no longer benign, and this led to a diagnoses. I was able to go back in medical records and find little things for all of those years.

Personally, I wish that I had been on medication earlier. I started within two months of diagnosis, but still I had already had it for such a long time. I know it would be a hard decision when you are not having much trouble, but it truly is an unpredictable disease.

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Old 02-21-2007, 01:12 AM #5
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So True, Virginia. By the time, the ABCRs were available for me, it was too late for much help. I did try Avonex and Copaxone but progressed to SPMS.

I wish I had had LDN before progressing to SPMS, but, as it is, LDN is keeping me pretty stable for the last 4 yrs. It does not go back and wipe out the nerve damage that has already been done, but I did improve some and haven't progressed in disability.

It is a personal choice, but looking into your options wouldn't hurt. MS is a progressive disease. I had "Benign" MS, with just one exacerbation, for 30 years. Since I was not having attacks, though, the ABCRs really wouldn't have helped, I guess?

A change in diet and keeping general good health and perhaps taking something like LDN may keep the monster at bay, while you are having no attacks.

Love and Good Luck,
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Old 02-21-2007, 10:35 PM #6
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SallyC, what is LDN?
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Old 02-22-2007, 05:39 PM #7
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Here is their Home Page Link, Jenni. When you get there scroll down to the blue squares and click the LDN and MS link.

~ http://www.lowdosenaltrexone.org/

It shows pretty much all you need to know of the history and Dr. Bahari's discovery of it, for MS.

A lot has been added, as well, that you will find helpful.

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Old 02-23-2007, 01:39 PM #8
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Thanks for the additional info :-)
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Old 02-23-2007, 03:30 PM #9
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Today I had a checkup with the MS neuro. The same one has been treating and following me for four years. I'm currently in the Tovaxin trial, but on my second try to have a positive test for MRTC's to make the vaccine.

If the test is negative, then I have to make a decision about treatment. We spoke today after the doctor looked at my MRI's from last week. Given my history, and my fairly clear-looking MRI's, I have the choice to go back on Avonex (which had the least side effects for me of the three I tried) or, go without treatment for awhile and just have regular checkups and MRI's to monitor the disease activity.

I still have to think about it, but I'll likely choose the no medication route if I can't stay in the Tovaxin trial.
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Old 03-03-2007, 11:15 PM #10
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Default Not benign but Swank helped

I've been dx'd nearly 20 years, but I had the symptoms of MS and/or Porphyria (my other dx) for 30 years before that. Not benign ever...caused grave trouble, although I still walked. The Swank diet I credit with keeping me walking and walking mostly straight. When I got off of it recently to try cocoanut oil for a week I suddenly lost ability to walk straight, got weak, had to lie down. Cocoanut oil was advocated for energy, to improve metabolism, and I think it surely did that, but it also is saturated fat, not on the Swank diet.

My MS was mostly hidden although I always had a slightly meandering walk and still do. My weak arms, eye hand coordination, dizziness, inability to "file" well, loss of IQ points, and finally Optic Neuritis brought me finally a dx when I had my first MRI. Since I always had Porphyria too, also undiagnosed, I cannot say always which caused what; but I'd say MS is benign, or mild, because of the Swank diet.
Since with Porphyria many drugs are problems, I am glad I have something else that really does make a difference. Some drugs have put me into Porphyria attacks. I don't know about LDN and Porphyria.

I am very depressed again, which comes on every time I have a good day when I'm active, get out, see friends....it always is the downer afterwards, and this time, way down. How to even survive it I do not know. I have to just wait.

Mariel

Last edited by Mariel; 03-03-2007 at 11:17 PM. Reason: spelling
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