Forum

How many mri's for diagnosis

I am still in limbo after 15 months of feeling rotten. I had my first mri 14 months ago for a severe headache after being concussed. Before I got my results I started with the typical symptoms of MS numbness, tingling, loss of vision, dizziness etc. The report had on non specific white matter. He decided to refer me to a neurologist. I had ataxia but he didn’t tell me if anything else was normal during tests. I had vep and another mri which showed no changes. Meanwhile I was getting worse and have had severe nerve pain and was on crutches at one point unable to walk. I have cramps, twitching and spasticity in my legs. I was then sent for emg/nerve conduction tests which was surprisingly normal. So now I’ve been coping with medication. Suddenly one day I got up and my legs felt good, the daily headaches and fatigue were gone and apart from a few twitches and fatigue I felt great for a couple of months.

Then in August I woke up with severe headache again. It has been daily like my head is going to explode. My vision is worse but my ophthalmologist can’t find anything apart from vision field defects in both eyes. The stiffness, cramps, twitching and pain are coming back and I have a spaced out feeling like I don’t belong in my body. I’ve been back to my GP and since everything else has been ruled out he decided to send me for an Mri again. My appointment came through for just a week later. I’ve been for the mri and waiting for the results

My question is how many of you had normal mri first before diagnosis and how long did it take for lesions to show up?

I forgot to mention the worst symptom fatigue!! It’s back with a vengeance

hi steph

i was lucky enough to only need one mri for my diagnosis.

it must be really hard for you. i hope that your gp can offer some pain relief.

carole x

Sadly you can’t know how many it will take. Some will take only one, however others will take quite a few if they have Ms for the lesions to show. Personally I’ve had two and they’ve showed white matter changes but not enough to DX Ms. Now on my third relapse and had two mri’ already but not dx’d.

now I don’t know if I do have Ms (I beleive I do) but it could take ages. My dad has Ms and it took him years to get diagnosd

sorry it doesn’t help you but big hugs and hope you get some resolution soon :slight_smile:

mick

It does help, my gp told me if I had it, it should have shown up by now. I know I have something wrong and I don’t want it to be ms but if it is I want the diagnosis so I know what I’m dealing with.

Yes I know from experience the doctors don’t commit to Ms unless there is definite evidence. My dad started with transverse myelitis where he couldn’t walk for a while. This was the first attack but the docs didn’t mention anything about Ms until a second attack about fifteen years later!!. Only then did they say that he had Ms and he’d known something was wrong for a long time

all I can say is keep pushing and keep getting sent back to the neuro until you get a definite dx be it Ms or whatever else it is

my last neuro said I have a neuro issue but can’t DX MS and made up a term for me. As you can imagine when it struck again I wasn’t just going to accept a made up diagnosis so I’m waitng to see a neuro again (1st October). Keep fighting and most importantly keep smiling!!

I know it’s hard at times but it will get better and when you know what it is you can begin to plan better for your future :slight_smile:

p.s. It’s not the end of the world of it is MS, my dad has had it years and is still as bonkers as ever my older brother has it too and still holds down a good job too :slight_smile:

P.p.s. Keep posting on here were a good bunch and will keep supporting and hopefully keep you smiling :slight_smile:

Thanks, I try to stay positive. It’s very hard not having a diagnosis because I feel my family and work colleagues are starting to doubt me. I know it’s not all in my head and its not stress. This is my stress lol

Yes I know you’re feeling. I’m on restricted duties at work and feel that my colleagues think I’m putting it on. Wish they could walk a mile in my shoes when I’m bad and then they’d soon realise. Currently getting electric shocks down my spine and walk like a thunderbird when I do!.

Eighteen months without a dx and it’s very frustrating not knowing what I can do to make things better.

Hi Steph,

Some people don’t like me telling of a possibility but this is a complaint that can be managed.

MS does cause headaches but they become more severe with a complaint called Sticky-Blood otherwise MS symptoms are similar; see http://www.hughes-syndrome.org/

Good luck ask GP to have a test.

G

1 Like

Only one MRI in my case. My first relapse (as it turned out to have been) was strongly suggestive of demyelination, but the neuro recommended some watchful waiting and I (never one to go chasing after trouble) was all for that. It was left that I should get in touch if something else happened. A couple of months later I got double vision - my second relapse, alas. That’s when I was posted in the MRI scanner and got my dx at the post-scan consult a few weeks after.

Alison

Steph, just out of curiosity, what DOES the Opthalmologist think is causing the bilateral defects in your visual field? That isn’t the kind of observation that one would expect an Opthalmologist to leave hanging in the air without getting to the bottom of.

I really hope that you get some clarity soon. It sounds as though you have been having a rotten time of it.

Alison

He just keeps telling me to come back in three months, I’ll have my third vision field test in December

1 Like

One mri but I wasn’t diagnosed until I had vep and LP my MRI show ed areas of inflammation my ve p positive nerve damage in both eyes and positive LP showed inflammation which he said he sees in people with Ms I was given steroids.

I am disabled though can hardly walk, i use borrowed crutches I get lifts to my appointments as my mobility is pretty bad but it’s taken 17 months for diagnoses due to going to my last gp for a year who was no help after changing gp diagnoses took 9 months.

also under. A eye. Specialists for a year who said its caused by a auto immune condition he diagnosed uveitis but neuro says floaters due to uveitis but ophthalmologist says caused by my condition.

I have just been to the GP as the Secretary said my mri report was fine. The report actually says no changes since the last scan (which said non specific white matter) but this doesn’t rule out the presence of MS. So now it’s a matter of wait and see but will have blood tests again to rule out other stuff as its been a year since the last tests.

Have just had a letter re my recent MRI scan saying it is essentially normal so I can have another one in 6 months if I wish to see if anything shows up then. Symptoms are still here though - :(. Although no-one wants a diagnosis of MS, I feel very upset to be left in limbo land - something is making me have to walk with a stick and feel unbalanced and dizzy most of the time plus fatigue, tingling and all the usual stuff. Ho hum just have to wait and see I suppose.

It’s a looong and rocky road,or can be you just got to hang on do the odd but of chasing up if need be, good luck in your quest as it’s not nice not knowing x