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Benign MS
How can one tell if they have benign M.S.? Is there criteria for it? Thanks!
Hi PH- Just a heads up. This tread is over two years old and Rindi may no longer be participating in the forum. Why not introduce yourself in a new "question".
Welcome,
Kyle
Welcome,
Kyle
I have self diagnosed myself with a form of "Benign MS", which is nothing more than delayed demayelination from my perspective. I had my first attack 15 years ago (tingling from my chest to my thighs for 5 days). I l also had about 10 lesions or bright spots on my brain at that time. 15 years later I had a subtle form of double vision only when I looked to my extreme left or right. That lasted for about 1 week. I have never taken MS specific drugs, but I have played sports all my life and probably always had a form of non-steroidal or non- inflammatory drug in my system for most of my past 20 years, to prevent shoulder and back problems. Although these drugs do not focus on the Central Nervous System (as some MS drugs do) I wonder if it helped minimize my MS? I have always had a slight brain fog, similar to taking 2-3 swallows of wine for the past 20 years. Other than that I'm now 50 years old and ski, play basketball, tennis and amazingly still have full motor skills and strength at a much higher than normal level for my age. I gues it could and may all change tomorrow, but todate I feel like the most blessed man in the world (all things considered). My MRI 15 years ago looks almost identical to my latest scan. That plus no issues inbetween or use of MS specific drugs has led me to self diagnose myself as "Benign" or "Delayed Demayelination". However, I'm no fool. My goal is to run out the clock before the progressive phase starts (Retirement age). Believe me, I know it's just a matter of time before my luck runs out! Anybody out there in my same boat?
Thank you so much for your comments/feedback. No dr. told me that I have "benign" MS. I just thought I did. I have more than 20 white matter lesions on the brain MRI. This has not changed in the follow-up mri's (4) I take Neurontin for sensory symptoms & am on wkly injections of Avonex. I don't think i've ever had an "attack." Almost all my tests, if not all, have come back negative (spinal tap, evoked potentials). I was diagnosed about a yr. ago at age 47 & had trigeminal neuralgia (once) at age 23. If I don't take the Neurontin (small dose), I notice the sensory symptoms (like spiders crawling on my body a few times a day). Otherwise, I don't seem to have any other symptoms that i'm aware of. I do occassionally get a very brief shooting pain on a limb & don't know what that's from. Anyway, I feel very lucky & optimistic about my prognosis. Thanks everyone & hope you are all well. Many good wishes to all of you.
COMMUNITY LEADER
I think some dr's seem to more often state 'benign' when the patient doesn't have a lot of disabling symtoms but they have more lesions than the magic no of 9, though from what we have discussed previously, the only way to know for sure that it is a benign form, is after you have died, a dx that can only be accurately determined though autopsy.
I can't remember who, but i'm sure there is someone (here) who was dx with benign MS and a couple of years later, he became disabled after a relapse. There lies the problem with a dx of benign MS whilst the patient is still alive, at any time their status can change and by then its too late.
I think Quix listed this as one of the MS myths, if your still breathing then there is no way to know if it is benign or not, so the dx of benign MS should always be questioned, a second opinion is in order.
Cheers............JJ
I can't remember who, but i'm sure there is someone (here) who was dx with benign MS and a couple of years later, he became disabled after a relapse. There lies the problem with a dx of benign MS whilst the patient is still alive, at any time their status can change and by then its too late.
I think Quix listed this as one of the MS myths, if your still breathing then there is no way to know if it is benign or not, so the dx of benign MS should always be questioned, a second opinion is in order.
Cheers............JJ
Benign MS can only be determined at the end of the course of the disease i.e. at the end of your natural life looking at brain and CNS tissue. I started out with a slow Progressing MS but 40 years later it picked up speed. No one can say when MS Progression will increase. I was told that Benign stuff until I got an MS Specialist who takes all MS seriously. It is like being a little pregnant.
Alex
Alex
There are some people (including doctors) that use this term. It is really out of date. It really looks like there are different rates of progression and levels of damage associated with MS, but even in cases of Radiologic Isolated Syndrome (RIS,) there is still some level of damage occurring in the brain (hardly benign.)
Technically, there is RIS, CIS, RRMS, PPMS, SPMS, and RPMS. There is no "benign MS." If you have plaques, or "black holes" and no symptoms, you still have damage. Hardly benign.
Bob
Technically, there is RIS, CIS, RRMS, PPMS, SPMS, and RPMS. There is no "benign MS." If you have plaques, or "black holes" and no symptoms, you still have damage. Hardly benign.
Bob
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Most people are diagnosed with the first McDonald Criteria:
2 or more attacks; objective clinical evidence of 2 or more lesions
Two or more attacks doesn't sound benign to me.
Even in CIS: 1 attack; objective clinical evidence of 1 lesion
(monosymptomatic presentation; clinically isolated syndrome)
The closest thing to "Benign MS" is going to Radiologically Isolated Syndrome where Dawson's Finger Lesions are present but the patient has never had an attack. Once they have one neurologic attack, it becomes CIS. It that attack goes on for one year, it is PPMS. If the first attack remits and a second attack occurs then they should be diagnosed with RRMS. This is what the McDonald Criteria tries to explain, and many providers manage to mess up.
Bob