I so wholeheartedly agree that I thank you for the chance to say that a group of diseases is likely in my mind also. Not only is it likely that there are possibly several kinds of MS but also that differential diagnosis is not as good as it might be.
Take lyme disease. It can cause neuro symptoms and can be devilishly hard to find, even in cases where it is known to be there. On pubmed there's a case study of a woman who was known to have had lyme and developed psychiatric symptoms. She tested negative but was cured of her problem after being treated with antibiotics empirically, suggesting a cryptic infection.
another example, the ataxias. Ataxia means discoordination due to nerve problems of some kind or another. MS is an ataxic disease obviously. This is however a symptom and not a diagnosis as any number of things cause ataxia. There are over a hundred kinds of ataxia, a number of them mitochondrial, as you guessed. There are "allergic" ataxias like gluten ataxia. This is a disease in which the person is sensitive and reacts to gluten making antibodies that damage the brain though the usual target for those particular antibodies is the intestines in that case diagnosed as "celiac disease". Gluten ataxia differs from MS a little clinically in that it usually has headaches and is slowly progressive, but the MRI looks the same. Simply avoiding gluten will fix this problem, and interestingly enough it is simple to diagnose; all you need is a blood test for celiac including the full panel while you are eating gluten in your diet. Problem is no one tests for this.
in my OPINION this is what people who swear by avoiding gluten have, and it IS molecular mimicry in that case. They were misdiagnosed in the beginning, probably because it is a newer diagnosis, a disease only recently described, or if it happens today simply because the MD in question does not know of this possibility and simply does not check. But not everyone has this if they''ve been told "ms"
CO Q 10 ataxia is a metabolic ataxia. Without enough coq you get ataxic. I've never met anyone with an MS diagnosis who was tested for this. Yet should this be your issue potentially you could supplement and do much better. Also you may well then be a member of the diet police and place less demand on your body by eating less allergic foods and processed things thus allowing the body more ability to use the co q you do have for the necessary processes rather than detoxifying free radicals created by an unhealthy diet. Actually, I think everyone can benefit some from this anyway no matter the neuro diagnosis because free radical damage is a feature of all of them.
Some ataxias are genetic like frederichs (adrenoleukodystrophy-Like Lorenzo Odone) and are the result of an inborn error of metabolism, in that case the use of fatty acids resulting in a buildup. This is usually easy to distinguish from MS because of the age of the person and the genetic component in those ones already described, but are there others we do not know of? something that builds up slowly or depletes slowly? Look at pernicious anemia, a diseases which has a genetic component that manifests inthe 3-4th decade or even later. The intrinsic factor is lacking so b12 is not absorbed as it should be. Yet most people have such a good supply in the liver that they only then get short of needs. As a result neuro problems
And then as you say some of us may well have a germ that's been missed. I have been on abx for 4 months and only this week finally know for sure it is helping me. I am a good candidate for this because I got both severe seronegative arthritis and MS in the same week 15 years ago. This happened a couple months after a long long backpack in the backwoods with many bites (think lyme) and also immediately after a severe respiratory illness. I also have adult onset asthma. Now is it likely that my immune system lost it's mind and suddenly started creating antibodies to brain cells and cartiledge all in that week? Nope it never made much sense. I was forever saying this must be a germ like lyme and the neuro and rheumatologist both said, no bad karma. You just got unlucky. When a single germ can cause both problems it's more likely I got a double whammy of autoimmunity in the week I got a terrible URI? When terrible URI's can be caused a CPn a germ that can cause both symptoms?
Geez GIMME A BREAK. I am so thankful that Sarah came out with her story so we can evaluate it's possibility for ourselves.
In my opinion CPn ought to be a differential diagnosis. The lifecycle of the germ and how it invades and misappropriates the cells it invades, as well as how it evades detection is absolutely unbelieveable in terms of what we used to know about germs. Problem is we cannot detect persistent CPn well yet, so we are now still empirically treating as it is an unproven connection to "MS" like symptoms. But if you have gluten ataxia and have been told you have MS, abx will not help you at all, though once you try the gluten free diet you'll think you solved the MS mystery including possibly thinking that people inland eat more wheat that seaside
(gee, I live seaside and we have wheat at the store as well as milk...)and this proves the link to "MS" because of epidemiology. OR perhaps the paleolithic angle becomes very key in your mind.
It doesn't matter that we've been told we have MS. All that means is tha we have the set of symptoms that matches that and that no better explanation came up. That other diseases have matching symptoms means potentially any other thing that can cause the same symptoms could be "IT" in your case. Doesn't mean that's it in my case.
I heartily agree that there are likely several causes of MS, not least of which is weak diagnostics and a loyalty to a pradigm that is at best limited.