This Is MS Multiple Sclerosis Community: Knowledge & Support

in another thread i read that the number of brain lesions = the number of attacks a person has had. is that true? wow that is scary. i have 4 large ones and "too many to count" smaller ones. (those were the doc's words) do new symptoms always occur with each new attack? i often get these sharp, shooting pains in my head and within a day i have new symptoms. is it possible i FEEL the lesions being formed during an attack?

Jill,



No, the number of brain lesions do not equal the number of attacks. What really counts is where the lesions are forming. You can have several lesions and no symptom change or just a couple of lesions and major symptom increase. The biggest problem with MRIs and the lesions that they show is that there isn't a correlation between the two. Most clinical studies spend a lot of effort taking MRI's to see how the drug may be doing but they all say the same thing.....no corrleation between the two so it's impossible to know solely by an MRI if the drug is working or not.

I've never heard of anyone feeling that lesions are being formed. What you are possibly experiencing is a new symptom of your MS.

Harry

If you review material from reliable sources, and yes, even from the drug companies, you will see that it is generally accepted that there is NO RELATIONSHIP between lesion load (number of lesions) and disease activity.

I was at an education session today where this was repeated by the nuro who was speaking and as he has been an MS specialist for a very long time I am inclined to believe that he knows whereof he speaks.

Also, I doubt that the shooting pains are directly related to the formation of lesions. It is my understanding that these develop slowly over a period of time, not suddenly. Interestingly though, I have also experienced strange shooting pains in my head, but I have never noticed them in conjunction with any oher symptoms.

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Carpe Diem

thanks for the info. i've found conflicting info regarding lesion load and level of illness. being newly diagnosed, i'm still trying to sort through this whole mess called m.s. there seem to be a lot of very knowledgable people on this site. i appreciate benefiting from everyone's input.

Jill

I think that what you are suffering with the sharp pains in the head is more likely to be trigeminal neuralgia. We have three major nerves in the head area and you may be suffering pain in conjunction with one of these nerves. I suffered quite badly with this for a few weeks and was forced to take medication (Tegretol in the UK) because the pain was so incredible. With trigeminal neuralgia some people can suffer with pain anywhere on the face but my pains were about 5cm above my right ear. Obviously I'm not a medic but it struck me that this might be a possibility in your case.

Magpie

hi magpie, thank you for the input. i do have atypical facial pain, courtesy of m.s. i have bilateral facial pain almost constantly...i will ask my doc if the shooting pains could be an offshoot of that.

Jill,

Harry Z is on the right track, and I have a little proof to throw out.




I posess clinical evidence that suggests that there is ABSOLUTELY no correlation between lesions and attacks. The two MRIs I've had over the past two years have shown a progressive reduction in lesions. Over this time period, I quit taking Avonex after six years, I am taking none of the FDA "approved" terapies, and my physical vitals (blood pressure, blood profile, etc.) have improved. Basically, I am a more healthy person.

What this suggests is that an MRI shows nothing, and the ABCR drugs may be harmful. It DOES NOT show if a drug is working or not! If someone claims that they do, question where this person got his/her evidence. Please always question those in your employ (your doctors). They should be dedicated to improving your physical well-being and communicating with you how his/her treatment options will do this. As patients, we need to communicate to doctors that the medical industry is WAY OFF base in its approach to treating people who suffer from MS. Thus, we need to always question what, and why, is his/her approach to treating me.

If a doctor is going to treat me for something, s/he had better be 100% certain that the treatment improves my overall health. No treatment that has been prescribed to treat MS does not meet this criteria.

However, if you are certain that the ABCR drugs work, then they do, but you should challenge your doctor to help make you well with healthful diet and exercise prescription. If you want to get well, stay simple: eat better and exercise more! It is a sure way to improve health. I dare you to find a doctor who disagrees.[/code]

hi rev,
i'm not currently taking ANY m.s. medications. i was recently diagnosed so i am trying to educate myself on treatment options. i have always eaten healthy and exercised. unfortunately, i am very ill now and cannot exercise or do most everyday tasks i need to get done. after reading up on the crab drugs i am scared to death to try them even once. i want to try ldn since it seems to be the less toxic treatment (less side effects, cheaper too).....chemo seems too toxic to me too. all the people i've talked with who have taken these types of meds all have horror stories to tell. i may just wing it and hope the disease process slows on its own. i realize many people will disagree with that.

[quote="Jill"] i have always eaten healthy and exercised. unfortunately, i am very ill now and cannot exercise or do most everyday tasks i need to get done. [quote]

Jill,

I'm sorry that you are feeling very ill right now; I wish that you are feeling well soon.

I am curious about something that you claim: you "have always eaten healthy." What do you mean? Do you eat at least 9 servings of fruits and vegetables per day? Do you eat only whole grain cereals? Do you always avoid fats and processed sugars? Do you eat plenty of cold water fish, or other omega-oil rich foods? Or, do you eat healthy by limiting your caloric intake and taking supplements?

Really, how healthy do we really eat when we say we eat healthy? Given that over 62% of American people are overweight or obese, it's safe to assume that very few people eat a "healthy" diet. Some of us just have a little more self-control.

Then there is the BIG "if" regarding MS. If MS is an immune disorder, a body with MS does not want things put into it that stimulates immune response: right? Following this premise, food compounds that a body is allergic to, or sensitive to, should be avoided. If you need, a naturopath can help with this; Eat Right for Your Type by Peter D'Adamo is the text I use.

If this is all old stuff to you and you do eat carefully planned, nutrient-dense diet, regularly follow detox diets, and you drink plenty of fresh water, vegetable and fruit juices every day, then maybe diet and exercise isn't the a place to look for relief. If you do eat better than I do, let me know so I can direct my research elsewhere.

Be Well,
Rev. Leonidas

hi rev,
you're preaching to the choir about healthful eating. i did not wait until i became ill to adopt a healthy style of eating, i began eating this way over 20 years ago. maybe someone else can benefit from the info you're written.
continued success to you on your treatment regimen.

Hi, Jill. Everyone here is right...The lesion load has nothing to do with the number of attacks. My son had 20-30 lesions at the onset of this mess - too many to accurately count. His first exacerbation was pretty severe, hemi paralysis, optic neuritis, you name it. A couple of years later, all of these lesions were gone (yes, gone) and he woke one morning with a blinding headache. (This was while using Avonex) He had one of the worse exacerbations he has had, with paralysis on one side, facial paralysis, difficulty swallowing, talking, and severe optic neuritis. The MRI showed 1 lone lesion on his brain stem.

He has been using LDN for 7 months with great success...I know how confusing this all can be, and you are doing the right thing by researching and learning all that you can. Good luck to you!

Kim

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Kim R.

Question about the lesions. I was not aware that the lesions could "disappear" on MRI. Several posts here have indicated that the lesions were gone upon a follow-up MRI. What does this mean? I understand that the sypmtoms are not related to the number of lesions; however, did the sypmtoms subside?
I have 2 cervical lesions diagnosed on MRI in December. My symptoms have been continuing since the end of November intermittently. But, I've been getting more and more. ie.. new right leg numbness, new left arm tingling. My doctor doesn't think that I have new lesions...does this mean that these 2 little lesions continue to cause ongoing symptoms and yet the lesions could someday disappear? Confused

Wish I had some answers. I do not believe MS lesions are supposed to disappear. That's why my son's doc was so puzzled. And that's why we still don't necessarily believe his diagnosis is correct. It is my understanding that the lesions turn to plaque, not go away completely. My son's did.

So the confusion remains, for me at least.

Kim

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Kim R.

Yes, lesions can "disappear". Especially in RRMS. In RRMS, there is still some remyelination going on (or else it would be relabeled progressive).

That's part of the reason why some "symptoms" in RRMS don't remain permanently. When and if remyelination does occur, those particular lesions "disappear" on the MRI.

Deb