I learned that the tests for MS are important. A radiologists read my MRI as MS. The spinal tab, however, was clean. My neurologist said she thought I had damages where MS does not go. She named some unpronounceable diseases, then said she had never see one of them. I asked if any of them were treatable, she said no, and I replied, well, let's just call it MS. It turned out she was right. I have one of the unpronounceable diseases. In fact, now I belong to the second largest group of people with myelin damages. The first, of course is people with MS. The bad news is that all the members of our second group are all undiagnosed. In 1997, however, NIH opened a research project to test us undiagnosed and determine what we have. They wanted 400 patients, and ten years later they are still accepting patients for testing... I guess we truly have a rare disease.
Unfortunately, if they cannot Dx what someone has, they want to do brain tissue sampling via open brain surgery.

Following a head injury in a Road Traffic accident I was referred for an MRI, due to dificulties with my memory, concentration and headaches, coldness and numbness in my limbs, all within 2 months of the accident. My initial MRI feedback stated "hyper signal intensities, post traumatic changes - contusion."

A follow up appointment with a Neurologist and it was further mentioned that there were "dots in the white matter on your brain". This was followed with the claim that is was normal for this to happen with age, perhaps not related to the accident, and not the evdience of any pathology. I am 31.

Why would these suddenly appear, is the doctor right to suggest it is not related to the injury? How can these just appear with age? If they are normal for a 31 year old, why would they be mentioned in the MRI results?

Does anyone have any advice on how I can improve my concentration and reduce the numbness since it appears further help from the NHS neurology route will not be forthcoming.

Hi Nick..Sorry to hear you're dealing with all this. Don't you love hearing something is "age related" when you're still in your 30's? LOL..I have MS related numbness and definately problems with concentration. I don't have any answers for numbness, but for concentration and other cognitive related problems I have the 3 T's (Occupational Therapy, Physical Therapy, Speech Therapy)..Still waiting to see how that goes..Best of luck in your search for answers!

Time will tell, Nick.

With MS, they are looking for the right size, shape and location of the "dots" (lesions), combined with a clinical history suggestive of MS. They want to see changes over time, both physically and in the MRI results, if the initial results are inconclusive.

Attached is a list of 100 differential dx, and information on how they dx MS. There is no blood test (or any other kind of test) that CONFIRMS MS, it's a matter of them ruling out all other potential causes, then putting the pieces together, usually over TIME.

http://www.neurology.wisc.edu/public...bs/Neuro_2.pdf

If you have any further changes in symptoms in the future, it is probably worthwhile to have further brain and C & T spine MRIs.

Cherie

I am 24 and last Friday I was told that I have white spots scattered though out my brain what could this mean? Everyone has been telling me it probably nothing but for a year now I have gotten dizzy spells headaches. I could be sitting still and my hand just starts to shake as well as sometimes I feel in my leg like there's a worm running down it and it kinda tickles. I am very confused and my fieance has noticed changes in me in the past year as well I have a hard time concentrating on something I forget stuff alot now! Does anyone know what might be going on, and are white spots scattered though out the brain ever normal, or is it always some type of disorder.

Hi Britt.. You dug up an old old thread.

Scattered white spots/lesions throughout your brain, almost always mean some sort of injury has taken place. If the lesions are enhanced/active, then you are probably experiencing some symptoms. MS symptoms can vary from person to person and include some of which you mentioned.

Other diseases can mimic MS such as Lime, B12 deficiency, Neuropathy...etc, so receiving a Diagnosis(DX) is not always immediate. Things, perhaps more serious, have to be ruled out.

Hang in there and stay with us for support and friendship thru your DX journey..

When I was your age, 46, I still had no diagnosis other than anemia. I was staggering, dizzy, in pain, etc. By age 51 an MRI showed lesions on brain, and I also was positive for Optic Neuritis and other eye problems shown on tests. I was dx'd with MS, but it was years before I also was dx'd with Porphyria. Porphyria is another disease which can cause the symptoms you have, and especially I notice it can cause the symptoms which another poster say are due to Celiac disease. I was once tried on a Celiac diet but it made me much worse, in far greater pain. I am sure I do not have Celiac disease, many years later. I have three rare diseases, but not Celiac. I do have the skin lesions, but they are due mostly to Porphyria, which shows skin lesions in some types and not in others. You should have porphyria checked out, but I warn that it's very difficult to get a proper test done, partly because the disease is rare and people don't do the test right, even experienced hematologists can do it wrong--I've seen them do it wrong with my own eyes, and heard about it over and over. The best way to get a hint is to look at a safe/unsafe drug list for Porphyria, and see if you fit that. Probably it's not Porphyria, but it's worth a look. Most doctors "brag" they have never seen a case, but I've known doctors who found MORE cases than mine after I was dx'd, right in their own practices. True story about a rare disease.