Hello to everyone and thank you for looking at this.I am really in need of answers as I am getting worse and need a dx so i can then do what i need to do to stop getting any worse than this.

I am female aged 43, 3 years ago I suffered an episode after a virus had put me in bed,then i woke one morning after a popping head pain and was unable to walk as normal.I could not co ordinate my hand movements and i saw my doctor who reffered me to the hospital. I had a brain mri which showed three lessions and the neurologist told me they were not looking at anything other than ms.

I picked myself up from that after the initial shock and tried to carry on as best i could.

I have had various symptoms since including, heavy, weak legs.The left leg being weaker with a vibration feeling left knee when touched. My left arm is numb and i can not feel the needle when having blood taken. My face is numb and most parts of my body, some more than others. I limp and find my left leg needs lifting when i walk.

I have other symptoms which include piercing head pain on one side, piercing ear pain, eye pain and brain fog with a spaced out feeling. I can only walk or stand for 10 minutes then heavy legs. I get tired making my bed but some days are better than others.I have learned to do less and pace myself.

I am told i dont have ms now since lumbar puncture results normal and evp normal, also second brain mri unchanged.I have seen 2 neurologists had ana bloods done and for hughes syndrome, diabetes, thyroid a little abnormal but all normal.The neurologist all but said this is all in my mind, even though i am not an anxious person or one that wishes to be like this (does anyone) i just want to be normal, or at least know how to treat my problems and get on with life.

I went back to neurologist with the hope of getting help for my increasing symptoms and legs but find that the 2nd neurologist now thinks me not a neurology case, so what am i? at least the 1st neurologist said he thought i had fybromyalgia and had ms symptoms (although he no longer thought ms), so i could see him again.

I am sorry to go on, i am so confused and feeling ill with what seems like no help.My doctor is good but has no idea what to do with me now.I feel anxious only because of interegation type interview with 2nd neurologist, which only makes me feel worse.(i saw 2nd neurologist for another opinion)

I am awaithing mri of the spine although 2nd neuro thinks nothing will be found (he must be physicic)

Thank you so much to all who read this very long report, which i apologise for but i hope you understand and can offer any help.

Best wishes

hi, i forgot to mention i get dizzy and suffer with terrible vertigo,
If i get too hot my symptoms feel worse too.I get the tingling, burning patches which last a couple of days and then go numb..you name it ive probably got it.

The second neuro was overwhelmed by my list of symptoms, he said there was far too many for it to be anything that any average person doesn't get. Yet when i was well i certainly didn't get them then!

Thanks again.

the MS Forum here? They are a good and active bunch of folks who'll likely jump in to help you!
http://neurotalk.psychcentral.com/forum17.html

Really, in my own Humble Opinion? MS and many neuropathies are 'cousins' of sorts in that they demeyelinate..it just happens at/to different parts of us. That said, rite now there are more treatments to help MS available than there are PN'ers.... Do NOT discount any diagnosis until all the tests are in! At the same time, don't worry yourself into an exhausted state in the process of getting a diagnosis. Save your energy for when it really counts! I've gone thru two auto-immune diagnosises and one cancer diagnosis and have been approaching the last two diagnosis's I got this way. Getting the FIRST one was hard enuf! Thank you!

IF you have a doc you trust to get to the real root of things [or even say "I don't know, I want you to see X"] is a doc to treasure always. However, if they're going you're a head case or the like? Go to someplace else where they either specialise in MS or Neuropathies [look up the hospitals' docs' training and where and in what specialities] and just go get a whole new work up if you can afford it/or your insurance allows [some plans do, mine did-saved my life!]

Stick to the key 3-4 main issues about your med issues...don't overwhelm a doc with the other stuffs - that can come in time. GET THE BIG stuff dealt with first. I suspect they mite shut off after #3? So go easy on them for starters.

Sure hope this helps. I've a SIL w/MS, and her husband, my brother didn't get it until he read something about my neuropathy I'd sent him from the NIH...he GOT the word 'demeyelination' and then understood. Just happens to us all in different places. Results - pain etc are still there.

's - j

--your current diagnostic limbo (and what you have does sound a lot like it could be MS) may be more a function of the current diagnostic categories than your symptoms.

Many doctors/neurologists still hold to the diagnostic protocol that says one cannot be definitively diagnosed with MS, unless there are mitigating lumbar puncture or evoked potential results, unitl there are TWO seperate and distinct symptom producing demyelinating events in the central nervous system, each lasting at least 24 hours and seperated chronologically. Of course, what this means is that everybody diagnosed with MS had a first original event, and many did not get diagnosed until a second, no matter what the MRI or symptoms looked like after the first . . .after that first event, they may get some sort of label such as acute disseminated encephalomyelitis (ADEM) or isolated demyelinating event (IDE). Most, though, eventually had a second event, or a progressive series of symptom increase, enough to "earn" the MS diagnosis.

I actually think this is particularly dumb, in that it often keeps people who've experienced one event from starting a medication trial that may prevent further events, or make the less severe--which after all, is what these meds are designed for.

There are people who get one large "attack" and never again another, though they may be left with some functional deficits, and in the absence of other obvious causes--and viral/bacterial prodromes can cause demyelinating episodes--it's rather uncertain what to call them.

I agree with dahlek that posting on the MS board here would be a good idea. I also think a look at the Liza Jane spreadsheets would be warranted:

www.lizajane.org

These spreadsheets were put together to be as comprehensive a series of possible tests for neurolgoical (and other) symptoms as could be imagined. They're good for tracking test results over time, to look for patterns, and also good for suggesting avenues doctors may not immediately think of.

thank you so much for your reply. did di say i am in uk, maybe things are different here anyway you are right about not worrying, i know i shouldn't but i have done lately, i really will try take your wise advice though as it is only driving me crazy!

I hadn't heard of neuropathy and still not 100% what it means but i think the 2nd neuro i saw said something along those lines, i just couldn't take anymore in and had started to blank over and feel 'spaced out'.

Thanks again and take care.

".........and still not 100% what it means...."

Read the 'stickies' at the top of the main topics page
for comprehensive meanings & explanations for PN.
There's a lot there, but pick & choose at your leisure.

Hi Sunnyday - I am sorry you are having such a miserable time of it... but glad you found this place and all the great advice here.

I just wanted to say that I am in the UK too and it does seem to be very difficult here getting help/answers to anything. I, like you, seem to have many of the symptoms of MS... but I also have clear MRI although I haven't been offered an LP (and don't really want one).

My symptoms have been slowly progressive over a 22 year period now but I am quite certain (after studying myself) that there is a demyelinating disorder of some kind. Like Dahlek, I am also now of the opinion that the criteria and differentiation between MS and some demyelinating disorders is unhelpful.

I have also had all the same tests as you (and had apparently normal EMG's of my legs and arms) and seen around 7 or 8 neuros now, including PN and MS specialists at the National Hospital of Neurology... and I get a 'don't know' and 'we aren't sure' and then 'we will see you in 18 months' to see how much worse it is.

It has helped me to get hold of all my medical records (you are allowed to do this - the cost is nominal) from the GP and now waiting for the hospital ones so that I can use some of LizaJane's charts. It was really interesting seeing the difference between what doctors told me and my GP e.g. they never told me that 20 years ago I had a pale optic disc and that they were taking a 'wait and see' approach to it being MS... meanwhile I thought I was going mad!

I may go privately if I can find a good neuro because I am quite sure that on the NHS they are not helpful unless you immediately fit into a category... and of course you only get a few minutes with them and no time for proper questions etc.

Meanwhile, I am treating myself as though it is MS/some kind of PN and doing my best to exercise and live a healthy lifestyle (modified Swank/Best Bet, lots of Omega 3, B12, other things.... just in case they help).

One thing that has happened is that the very last symptom: an arm and hand this time has actually got better... which hasn't happened before... and also directly coincides with 18 months of my regime so who knows... maybe there has been some reparation....

Best of luck