The one who said that if your symptoms go away let me know so we don't have to run additional tests?

That is a Quack. Are you seeing a general neurologist or an MS specialist?

I would get a 2nd, 3rd, 4th, 5th...until you get a dx as to what is causing these issues. You know your body better than anyone else and you are your best advocate for the best healthcare.

What you have described can be symtpoms of MS however there are diseases that mimic MS and visa-versa. So you will need to have tests to either rule out MS or verify or rule out other diseases and maybe have a wait and see approach (clinical findings) for MS dx.

Some people can get a dx right away and others like myself takes years as my symptoms would come and go and would not last that long to warrent a visit to the doctor so I shrugged it off, that is until 2000 when I was experiencing numbness and tingling in my extremities, MRI or brain and spine...had 6 lesions on my noggin', given MS dx and then since my LP was negative for bands, took back dx. They now say LPs are not necessary to rule out or give a dx of MS as not every MS pt has bands, me being one of them. However LPs may be needed for other diseases.

Keep a journal of your symptoms, how long they last, etc...this not only will help you but your MS neurologist as well.

You should have a brain and spinal MRI with and without contrast, EMG, Evoked potentials, blood work as well as your B12 levels (this can cause numbness and tingling), etc.

Looking back I've had MS since my early 20's, wasn't given a dx until 36 and that was 8 years ago.

There are four (4) types of MS: Relapsing Remitting MS, Primary Progressive MS, Secondary Progessive MS and Benign MS.

There is no cure for MS however there are drugs that can slow down the progression. Also eating a well-balanced diet, exercise and keeping a postive outlook can greatly help symptoms.

Don't stop asking questions here or with your doctors until you get an answer that you can live with. It's your health.

~Zig

Initially when I first saw a neurologist was when my GP strongly suspected MS as he(my GP) had come across a couple of similar cases where the patient(s) demonstrated similar symptoms/complaints like mine. I saw a MS Specialist consultant. However the appointment was very dissapointing and I was literally accused (by MS the Specialist consultant) of ''making'' up the symptoms and that I was going through a ''phase''! I felt really let down as I had expected to have gotten some tests in the form of a MRI done at least. I could not believe the fact that someone so learned could say something like that and make such conclusions without any test(s). In fact, when I asked what I should do to try and combat these symptoms, i was told such things come and go! I was even told that i'm not displaying the symptoms i describe at the time of my appointment, hence i'm making them up.

I was adamant that I have some tests and was reluctantly offerred a MRI of the brain, which led to the white matter lesions being shown up in both hemispheres of the brain. He also wanted me to see a psychiatric consultant who totally rubbished the idea that I was mentally imbalanced. I was quite pleased to recieve the results from the MRI and the psychiatric consultant as they helped prove to the medical staff that i was not making the symptoms up.

A blood test for B12 deficiency and excess copper in the blood both came out as negative. However, in the time between my very first consultation with the MS specialist and my second consultation (with a general neurologist) I was rushed into Emergency from my work place and was hospitalised as my symptoms made it impossible for me to walk or even write. That's how, through the hospital I was refferred to 2 more neurologists, 1 of whom is my present neurologist.

Now my neurologist wants me to have a mri of the spine and a L.Puncture and undergo a series of other ''tests''.

Visiting the ER based on the episode of you not being able to walk or write hopefully will get their attention. If you do have an LP and it comes back negative, please remember that not all people who have MS will have a positive result (bands in their spinal fluid). And if your neurologist solely relies on bands for a MS dx...educate him or her on this fact and seek another opinion.

Are they doing the LP just for MS purposes or are they doing it to check for other diseases and if so, what disease would that be and is a LP really necessary?

~Zig

Hi ice pop my name is sam im 22 years old with ms well for me i had double vision tingling in my right hand and both feets i was 16 at that time i live in detroit michigan and have a really nice neurolgist at first they thought i was abused b cuz everything turned out normal which was the mri, spinal tap, and c t scan every 1 was surprised but like u do describe ms symptoms but u usally get it if someone in the family has it for me it was confusing b cuz no 1 in the family has it but me it was a little weird but i took copaxone to cure it which made it worse cuz i had numbness to but now it has gotten worse b cuz in february of this year i found out i have itp which is low platelets its an imune disease from ms well i am thinking of going away from detroit and going to another hospital becuz i was too young to have it i had it since 03 well hopefully u feel better and hope its not ms b cuz my life is messed up since i have ms i also have memory loss now no 1 trusts me with n e thing now well hope everything is normal and good luck and try to go to another doctor to make sure if u have ms well bye and get well soon

Well, i just recieved a report of my most recent visit to the neurologist and he has totally rubbished any chance of a neurological disorder, however on the other hand there are mentions of and i quote, ''possible nerological reasons to explain the symptoms". I am in such a state of confusion.In the meantime although my health has not been too bad, i did have a sharp bout of pins/needles in my left hand which affected left leg movement, it all lasted 3 days. A similar symptom ladted nearly 1 week in late Aug '08
I'm beggining to feel that the hospital staff are taking the mickey. Apparantly, they've ignored the presence of the white matter lesions and have classified them as peri-ventricular non specific white matter lesions which are not significant according to this consultant!
Could some one please tell me what peri-ventricular non specific white matter lesions means? I've tried googling it but the explanation is rather vague/long winded. By the way, im seeing some of the ''finest'' doctors, im told!

Ziggy, the LP is to look for ''oligoclonal'' bans, whatever those are...

Thanks.

How terrible that your neurologist can not make his / her mind up.

They state 'non specific white matter lesions', OK then the episode that you had that landed you in the ER was specific. People don't have that happen and not a reason behind it. It is totally neurological. The length of time that you described one being 3 days and the other approx 1 week. Let me ask you this: It stopped all on it's own, didn't it? No reason for it to start, terrorized and entertained you for a bit and then left. If it is MS, that is called a flare, attack.

I've done a little research on the Periventricular Lesion as well as additional info on MS and this is what I have for you:

Causes of periventricular white matter lesions:
Casues of periventricular white matter (PWM) lesions include normal senescent changes (then they are called UBO's, for "unidentified bright objects), small strokes, and disorders related to multiple sclerosis (MS). PWM are correlated with vitamen B6 (pyridoxine) deficiency.

Getting older: Age is certainly the single most common cause of PWM. This is presumably a "wear and tear" phenomenon.

Small strokes: A period of hypertension is a common cause. In the authors experience, just a few days of extreme hypertension may be enough. This might suggest that small bleeds are the cause in some. Clinical studies also show association with diabetes, but not consistently with atherosclerosis. PWM are often an accompaniment of migraine, and occur in roughly 20% of persons with migraine. As about 10% of the population has migraine, this means that about 2% of the population has white matter lesions due to migraine.

MS and related conditions: Demyelinating disorders such as multiple sclerosis and relatives can cause PWM. There is an incredibly rare and a familial variant, called CADASIL. Testing for the notch-3 mutation that causes CADASIL is done by laboratories.

MS Testing:

Additional tests: evoked potential, CSF, and blood

It is not usually necessary to do all diagnostic tests for every patient. If, however, a clear-cut diagnosis cannot be made based on the tests above, additional tests of evoked nerve potentials, cerebrospinal fluid (CSF), and blood may be ordered.

Evoked potential tests are electrical diagnostic studies that can show if there is a slowing of messages in the various parts of the brain. They often provide evidence of scarring along nerve pathways that is not apparent on a neurologic exam.

Cerebrospinal fluid (CSF), usually taken by a spinal tap, is tested for levels of certain immune system proteins and for the presence of oligoclonal bands. These bands indicate an abnormal autoimmune response within the central nervous system, meaning the body is producing an immune response against itself. Oligoclonal bands are found in the spinal fluid of a percentage of people with MS, but since they are present in other diseases as well, they cannot be relied on as positive proof of MS. They may also take some years to develop.

Blood tests: There is no definitive blood test for multiple sclerosis; however, blood tests can rule out other causes for various neurologic symptoms. Some other conditions that cause symptoms similar to those of MS are Lyme disease, a group of diseases known as collagen-vascular diseases, certain rare hereditary disorders.

When my neuro first gave me the dx of MS I was somewhat relieived as that is what I figured and then he wanted a LP, I agreed, no bands so he retracted the dx so I empowered myself with as much info that I could regarding MS and different resources and I educated myself and him along the way. I truly believe it boils down to what they are taught and their personal belief of what MS is and how it acts in different people.

Also some docs really hate giving a dx of MS to anyone especially someone as young as you. Looking back I've had MS since my early 20's...symptoms would come and go and didn't last long enough or painful to warrent a trip to the doctor so I would shug it off as working too hard, pulled a muscle, slept on hand funny, etc.... Now looking back, it was probably MS playing with me all that time. I was finally dx at the age of 36 and that was 8 years ago. Actually come to think of it when I moved back to my home state I visited my PCP for several years of annoying things and he always had an answer but it made no sense to me as to how that happened but then again I'm not a doc. Approx 7 / 7 1/2 years ago I got a copy of my medical records and he put in there 'doubtful she has MS' and this was after my neurologist sent notification to him that I indeed had MS. Needless to say I switched premantently back to another doctor in his practice.

Ask your neurologist this: Is it not important to find out what happened to me that landed me in the ER?

Until a definate dx can be given, most neurologist will put a person on an MS drug as it is the only thing that can slow down the progression when there is a question of probable MS.

~Zig