All the tests I've had so far are clear, even though it's clear there's something wrong

New diagnosis and before diagnosis
1

I had an mri in august because they thought I had a stroke (thankfully it wasn’t the case). So when I saw the neurologist she said because my brain MRI was clear, there wouldn’t be any need to do it again. Numerous blood tests everything is fine.

She did say she thinks it could be peripheral neuropathy, from what I read it’s mainly in diabetics, which I don’t have. So the neuro has ordered me an eeg ( the electrode thing to record brain activity) and a nerve conductive study those will be soon.

I fell a few weeks ago and hurt my arm, the dr thought it could be broken because I couldn’t use it at all and its been swollen. So now after the trip at the hospital they’ve added my arms to the nerve conductive test and have ordered a mri of my spine.

I have a lot of the ms symptoms but because my brain mri was clear the neuro didn’t consider it.

It’s really frustrating, because the hospitals and drs can never find anything wrong, and I’m stuck dealing with symptoms but obviously can’t be treated without any diagnosis.

I don’t have another neuro appointment for another 3 months which is so far, my symptoms can sometimes be debilitating, I’m finding it hard to cope with and live my life normally

2

hi shelley

the frustration must be driving you mad.

now that you are in the system as far as neurology is concerned, try not to worry because something must come of their involvement.

tell your gp that 3 months feels like forever and that you are thinking of ringing the secretary to have it brought forward.

sometimes a GP pushes on the patient’s behalf.

watch your stress levels because i am convinced that it make symptoms worse.

if you are in work, you may need a sick note if you are having a really bad time.

good luck

carole x

3

Hello Shelley

The three months wait for the next neurology appointment may be to ensure all of the necessary tests are done, reported on (by the radiologist in the case of MRI) and considered by the neurologist.

It would be an utter disappointment to have an appointment in a month but not have all the tests completed or results in.

So while it seems like an age, it does sound like you have a number of tests to keep you busy until then.

You should perhaps keep in mind that many other diagnoses share symptoms with MS. So the neurologist might think there’s something completely different going on with you.

Try not to worry and get stressed over the wait. With luck you will have answers at that appointment.

Sue

4

The frustration really is getting to me especially since they can’t treat me for something they don’t know what it is. Maybe if I go back to my gp about symptoms enough times they might be able to get the neuro appointment pushed forward.

I haven’t got a job at the moment, I’ve been looking but it’s so hard when I have 5 hospital appointments in one month.

I’m finding it so difficult to not be stressed because I have no diagnosis and don’t know what’s going on with me

5

I didn’t think of that, it just kind of felt like I was being brushed aside because 3 months is a long time, but I think you could be right, if they don’t have all the results I guess theres no point in a sooner appointment. It’s still so frustrating, if they could only do it quicker.

A lot of hospital appointments, 5 including one I’ve already have this month.

It’s hard to know because I’ve had so many symptoms that are similar to MS which is why I was thinking possibly MS, but if there’s others that are similar to MS, it makes it more difficult to know

the wait is just so daunting and just hard to not stress or worry about it

6

hi in truth you have not waited any time at all.

back then when i started it took SIX months to see a neuro. I started my journey in 2000 went blind. i didnt get referred to neuro it was dismissed by doctor as low blood pressure. I crashed physically in 2006 september 11th. new doctor as i had chaged my practice said she felt it was neuro so i was referred.

six months appointment which would bring me into 2007, so as i was working i paid to see the guy it cost me 90.00 back then but worth it as i saw him in TWO DAYS. He new it was neuro but told me it could be a long haul because of my age. 10 years it took, to finally get told Primary progressive MS.

I paid for my first MRI it cost me 250.00.

I just wanted to know what was wrong so i could go back to work.

I never did sadly.

It is a long waiting game. some people are lucky and find out quickly as they have the perfect presentation of MS, but MS is not perfect. It can hide on films, it depends on where the lesions are as to the depth of the slices they look at on MRI film.

head scan if you have say PPMS well it rarely shows on head scan as a lot of people have the lesions on their spine.

3 months is soon gone when you are having tests.

you have to just relax and breath. Like carole said stress is the worse thing, it can trigger pseudo exacerbations of whatever is going on.

You dont really say what is going on. Mine has never changed since that first day, always left side weakness but getting more and more worse, and dead foot and pain getting more and more worse.

Just enjoy xmas. its like when you watch the kettle boil it takes ages. but if you just think right i see the guy on this date you will be surprised how quick it goes. but dont be disappointed if that meeting doesnt turn into another meeting and more tests.

look up the McDonald critera for diagnosing MS it takes for ever, but i got there in the end i never gave up. I survived it all only to find with PPMS there are no cures or medications…

7

I’ve only recently got a neuro appointment at the end of november, I’ve been having symptoms since before May. It was supposed to be in january but it got pushed forward after having a lot of drs appointments and ending up in hospital a few times. Just this week I have 3 hospital appointments, then another one next week and then one more in January.

3 months just feels so long and not knowing is frustrating, I’m looking for a job and having these symptoms is making it difficult.

I’ve been having a lot of problems with my left side, been falling over a lot of times, my balance is really bad I’ve been using a crutch so I don’t fall, numbness, leg dropping, nerve pain, really bad fatigue, dizziness, burning pains, light hurts my eyes, problems seeing, having like chest pains and pain in my ribs, started having problems with my right side too.

I feel like it’s going to prevent me living my life because I don’t know what it is, I’m 24, always wanted to have kids but if I’m always experiencing symptoms I feel like it won’t happen or even being able to find a partner.

So even after all of this time they still can’t cure ppms, how do you cope if they can’t do anything for you.

8

Hi Shelley

I mean no disrespect, but 3 months when you’re aged 24 seems like forever. And during that time you can’t get on with life. Not to mention the fact that your symptoms began more than 6 months ago.

But when you are older, it doesn’t seem like such a long wait.

People diagnosed with MS often have a wait of several years before they eventually get a diagnosis. Just like Crazy Chick.

The question of how people cope with a diagnosis of PPMS is a big one. It’s very, very unfair that there are no disease modifying drugs available for people with PPMS. And people with the diagnosis have to be pretty strong to cope with it. I’m in awe of the bravery and immense positivity so many of the members of this forum are with a primary progressive form of the disease.

I hope the time passes quickly for you.

Sue

9

It feels like I’ve been waiting along time, I only graduated university in May and since then I’ve not really been able to work, I should of been starting my career by now, not being able to be treated is frustrating for me, a lot of people my age are usually enjoying their life

I had actually been having different symptoms throughout my last year of uni, it just hadn’t gotten really noticeably bad until May. The thought of not being able to get a diagnosis for years just seems terrifying and then not being abled to be treated at all is worse.

I’ve been ruled out for having peripheral neuropathy or carpal tunnel today, but it still leaves it still unclear about if it could be MS.

The people here are really brave considering they can’t be treated, it’s amazing how strong people with it are, hopefully soon theres some kind of treatment.

Hopefully time goes quickly thank you