Neuros differ on age as a factor. Yes, it's considered a disease of young adults, but what if a person had undiagnosed MS for 30 years before they finally got an MRI, visual fields, VER, tests by physiatrist, cognitive panel, and all the other thorough workups? I never had an MRI until I was 50. I had many brain scars and problems shown on all other tests, but I'd had symptoms for a long time. My case was made more difficult by the eventual diagnosis of porphyria as another disease present.

Some docs said, rudely "but you're too old!" to have MS. Others said they had dx'd it in people in their 70's. The age thing depends on many other factors. My aunt was not dx'd until her 40's, after many years of symptoms, but she was dead before 50, with paralysis, blindness, inability to speak. So many factors to consider, no wonder neuros are "nuts". And drive us nuts.

As for my aunt, I think she would not have gone that way if she had been on the Swank diet. Her diet was unusually high in fat, saturated. Swank would have said this caused her early decline. He may not have been right in every case of MS, but I know that if my MS is related to my aunt's, that is, the same type, the Swank diet is NECESSARY for me. Saturated fat kills those with our type of MS.

I was a patient and test subject for Dr. Swank. Not all respond to his diet.
Some find it, as I said, NECESSARY to survival.

Mariel

Would just like to say that I was in my early 60s before being diagnosed. Yet, medical records show that I had had MS for at least 30 to 35 years. I was reporting symptoms to my regular Doctor. Unfortunately, he didn't know enough about MS to do anything.

It was only after I got really bad off and realized that something was wrong with me neurologically that I took myself to a neurologist. I actually was diagnosed by the first one as having pheripheral neuropathy. When he wasn't doing anything to find the cause, I went to another one. He did an MRI and immediately began other tests after he got the results of the MRI.

I wish I could have gotten on one of the meds sooner.

Virginia

I have had that, too. In fact, it's one of the "things" in porphyria. I had it bad in the fall because a dental surgeon gave me the wrong anesthetic. Vertigo and PN in the feet for months. Got over vertigo in four months, feet better in six.

I jerk, too. Mostly at night or when I lie down to relax. My lower spine and legs jerk. It's called myoclonus, and some people call it myoclonic seizures, but some say it is not seizures. They obviously don't know! I control it with l050 mg of Magneisum a day. I could not take Dilantin because of having porphyria, but Klonopin is one drug I can take. I take a small dose daily, but magnesium is the thing which really helps the myoclonus. B1 has helped lately, too. As I age I need to add more things to help the condition. p-5-p (pre metabolized B6) has helped too.

Sometimes I jerk clear off the bed. It's been bad lately and harder now to regulate with magnesium.

I have lots and lots of brain scars and about 50% of docs call then MS and the other 50 % call them porphyria scars. They don't know. So they guess. since I got dx'd with MS l9 years ago I have only met two neuros who had a clue about this subject. I met one, and heard about the other. The one I met was a "headache" neuro I was sent to after I went to the ER with the bad PN. She said she thought the scars were probably from porphyria, but that I needed to hook up with a good MS clinic as they were the best to treat this condition, whatever it was. She wouldn't take me on as a regular patient because she specialized in headaches, and I don't have any, or if I do, they are not painful. Possibly silent migraine?

I will never fully know what it was that I had. But both porph and MS are in my dad's family back as far as we know to look. Great grandma in a wheelchair in my dad's childhood home, presumed MS. His mother had porphyria, dx'd in retrospect by my diagnostician when I got the dx. I probably have a "both" in some weird combo that goes down generations. Double whammy. Means I can't take MS drugs.

Mariel

Hello Virgnia, how are you? I found your post on this great site, I hope you dont mind if I write you, I am to, trying to find answers. Can you tell me the tests they had you take before you found out for sure? And How old are you now? And are you on any Meds? Thanks Virginia, I am just so frustrated with going around in circles,and many phone calls & going to Potland trying to find a good Neuro. I have had 3 MRI'S & lots of test's, but no Spinal Tap yet. Thanks, Linda