Confused and upset

Some neurologists like more then one test I had brain lesions and still had to have vep and LP done but there not so bad if you do need these tests done my neuro just said it showed ares of inflammation then I have nerve damage in both eyes and positive LP test and I am still waiting for a Ms nurse.

Been waiting 4 months so in end I just asked gp for meds as he is awesome best gp I’ve had and only had 2 before him, I am praying he will give me LDN :slight_smile:

Yes about diagnosis its very hard in this country unless all the T and I are crossed and dotted. Disemmination in time or something isnt it?

I suppose one lot of lesions doesnt make MS, it could just be a one off and they repair themselves.

My daughter had lesions on her brain and they diagnosed her with M.E.

I find the diagnosis very stressful. I had all the tests MRI, VEP, LP. The mri showed lesions on spine, the vEP showed i had ON at some point and it was in both eyes, the LP showed o bands but the blood test alongside the LP showed inflammation which made the LP negative for MS…so even with two lots of positives i was told it COULD BE MS, then i paid to see a doctor privately who went through all my scans and notes (i paid for all my scans and notes), and she told me i had MS and also tests came back positive for a coinfection of Lymes disease Erichilosis.

I know people who get diagnosed with one MRI…and others are put through the mill dont understand it, unless its different PCT who set the rules for that area…I too have a great GP.

My MRI showed areas of inflammation I have brain lesions, my vep showed nerve damage in both eyes and a positive LP I have O bands I think it was, neurologist coded it in simple words instead of neuro language LOL

So everything I said above my neurologist said that’s what we usually find in people diagnosed with MS then he gave me steroids, didn’t help me as I’m not RRMS just explaining what he told me :slight_smile:

Isnt it ridiculous you have been waiting 4 months for an MS nurse. One of the reasons i never had the I.V. steroids in the end apart from the UTI and the slight bone problem is i was beyond RRMS and in constant relapse.

I do find it odd some neuros diagnose with one MRI and others make people go through all the tests.

They generally seem to be a law unto themselves. x

Haha, I’m definitely thinking my neurologist is a law unto himself.

My steroids have worked wonders, I’ve been on them 10 days and finally feel kind of normal… Still tired and lacking energy but some form of normal!! Going to attempt to go to work next Monday for a few hours, that will be the real test.

As for diagnosis… Part of me really hopes it’s not ms, but then part of me hopes it is. If it is then I’ll have a diagnosis and be able to get on with treatment and live my life to the best I can. If it’s not then I feel like I’m back at the beginning with frightening symptoms and no answers! Ah well… Only time will tell.

hi dotty

just sort these UTIs out!

i told my gp that a friend who also has ms takes a maintenance dose of trimethoprim and he thought that was a good idea.

i don’t take it all the time but did until the infections stopped re ocurring.

its reassuring that i have a packet on standby.

see a bladder nurse and he/she will absolutely agree.

carole x

My GP is amazing I’m praying he will give me LDN bladder nurse been twice I was on vesicare that prevented me emptying to nurse said to stop it so now I can go more often, yeah 4 months for Ms nurse is terrible I am progressive though and 4 physio appointments and she’s ready to discharge me.

my neurologist is great but what can he do now appointments are only every few months if I need anything gp will give it within reason LOL

good luck x


I’m not good again :frowning: yesterday I got a headache at lunchtime, then at about 11 last night I had the worst headache I’ve ever had, all the left side of my head was so painful, like an 9/10 kind of pain, then my foot started cramping and my leg went numb. I was debating going to A&E but expected to just get sent home so I dosed up on painkillers and attempted to sleep. I finished my steroids New Years Eve and have felt ok. Today I’ve got up with headache again and a funny feeling leg but not half as bad as last night… I’m starting to wonder if this is just going to be my life now. I’m so fed up, I’m just sitting crying which is making my head hurt even more!! I’ve phoned my GP and I’m waiting for a duty doctor to ring me but don’t know what to expect from them.

I didn’t think headache was a sign of Ms, I started off legs giving way after a gp saying I was fine I changed and brilliant gp he knew I had signs of Ms but never once mentioned it, great gps did all tests but my walking and balance was so bad the first neurologist appointment he mentioned Ms.

I hope you don’t have it I wish I didn’t my mum thinks I can do things like there is nothing wrong she doesn’t understand the disease at all daughter knows I have it but she’s Young so she thinks it’s my balance and walking and that’s enough she’s only 10.

If you do have it a gp can’t diagnose so your in for a long process referral to neurologist then mri vep and maybe LP 9 months my diagnoses took but I was already deteriorated 12 months before I wish you all the best.


Alysea Families dont seem to get MS do they how it affects us.

My mum. “Why cant you come down to see me you always tired…” lol…

She lives in Bristol about 30min for me in a car and it wipes me out…i do go but i have to really push myself. Then i know that i am going to be down for a few days in pain and fatigue.

Sadly i know quite a few people with headaches and MS, in actual fact one of my MS buddies was diagnosed with migraines before she got diagnosed with MS…its not A typical symptom but it is for some unfortunately.

Hi Dotty, how are you hun?

It could have been your steroids…my husband is on them all the time and he sometimes will get a bad headache especially towards the end of a course…not saying thats your problem though.

Noooooooooo crying hun…it will make you feel horrible. The steroids too can change your emotions…and give mood swings…and you might not be suited to them…

I really hope you are ok.

If you do have MS hun, it does wax and wane…you might have had an exacerbation of smymptoms perhaps you are just coming down with a cold or something.

Try not to worry too much ok. Easy for me to say.

I wake up a lot with numb leg and crampy toes, actually you would laugh if you could see my toe on my left foot as when it cramps and spasms it has now moved away from the big toe, like its saying to the big two…“jeez your breath stinks lol…”…

Big hugs. xxxxxx

Thank you for your replies. The gp I saw was ok, he said that I have slight weakness down my right side which alongside the numbness points to MS but the headache points more to a migraine. He’s put me on some different steroids as they seemed to work last time and he doesn’t want to interfere with my normal gp’s plans. I’ve have about 7 episodes of this now since the end of October, I just want an answer!! For me the headache is the worst part, I can cope with the numbness and cramp and being tired, but the headache is unbearable.

I admit I had a bit of a cry yesterday, it’s getting me really down and sometimes I need to let it get to me… I have a cry and then man up again lol

Oh dear, you are having a right time of it. I too have just had MS mentioned after an MRI on my spine showed up Myelin sheath fading!! That’s what i was told. I then was sent for a brain MRI which i was told was normal. Not sure what it means now. Off to docs today to see if i can find out more. I am in considerable pain and have been since Feb in my arm and beginning of October in my neck,.Also having blurred vision. I have been referred to see a neurologist and this appointment has come through for March. I don’t know how much longer i can cope with this pain.

I’ve got a head and spine scan on Sunday so I’ll hopefully get some answers from that. I’ve got an appointment with my lovely GP tomorrow to see how I’m getting on so can ask him why my scan has been pushed forward.

The steroids seem to have kicked in again and got rid of most of the symptoms but then at work today my leg was numb and my vision went funny… Starting to think that this might just be normal now though.

I don’t know about you Tracy but to me the worst thing is not knowing. At the minute I’ve got one voice in my head saying “be kind to yourself, you’ve got something seriously wrong with you and need to allow your body to be ill” then another voice saying “man up, get to work and get on with it, being pathetic makes it worse”… All I want is an answer and to get on some kind of treatment and be done with it!lol

I feel exactly the same. I went back to gp today to discuss my head scan results and to ask if those coming back normal ruled out MS and after we got past him calling me a different name and quite obviously showing signs he hadn’t even bothered to read my notes, he said that he couldnt rule out MS but i definitely needed to see a neurologist with a potential for more tests. I want to go back to work next week so i managed to get some meds he is hoping will help give me some relief from this intense pain. I too have been suffering from intense headache. Feels like someone has my head between their hands ansd squeezing really hard.

Lets hope we dont suffer mentally or physically for too long.

My steroids seem to be working wonders for my headache, Im on prednislone. My headache has been the worst part, although the numb leg is now starting to annoy me, I forgot about it earlier and tried to run upstairs and ended up falling over. I got so annoyed with myself.

Seems like we’re playing ‘hot potato’ with the doctors, being thrown back and forth until one of them decides to give in and whack a label on us! I’ve got to laugh, it stops me crying!!

Girls, i do feel for you both honestly i went back and and forwards for about SIX YEARS even with positive stuff on my tests. What was against me was my age AGE lol…

Its hard work getting a diagnosis of MS believe me…but it comes in the end, so i just sat tight and strapped in for the ride…

The thing is I felt no different the next day after wearing my label 24 hours as i did the day before, the symptoms were still the same lol…

Good luck on your MRI Dotty, i am sure that should give you answers…

Tracey, i have heard of it referred to before this MYELIN SHEATH FADING, a buddy on an American forum and she had neuropathy diagnosed. I remember because she told me the pain in her arm was like hell on earth, it was the nerves being exposed or something, but so far she hasnt been given MS diagnosis. I am sure she is on some sort of morphine patch the pain was so bad she said it was like the worse toothache 100 times.

I hope you both get answers soon. xxx

Thank you. I’m definitely expecting a long ride, I just feel like I’m being a right hypochondriac at times… Actually I’ll rephrase that… I’m bothered that other people think I’m a hypochondriac!! I guess a diagnosis will make my feel better in the sense that I’m not imagining it all and I’ll let myself be poorly at times instead of battling through. I still kind of hope a diagnosis will mean I get some magic medication to make it all go away as well.

Anyway best buckle up and get ready for the long journey!!

Hi Dotty, no i totally understand where your coming from I felt the same too, its a shame though isnt it we have to feel that way. I have always supported friends and family when they feel unwell, and some have got long term illness.

Oh I have met a few hypochondriacs lol, but they show themselves differently…

If that makes sense lol…

I dont know I had to have an EEG yesterday for this possible Transient Epileptic Amnesia and now have a headache and rotten back ache lol…I mean i feel like a hypochondriac after every test, as they seem to have an odd effect on me lol…x

Oh no, that’s not good. I’m just hoping this MRI on Sunday shows something, that way the ball will hopefully start rolling faster. It still feels like a bad dream at the minute, I’d quite like to wake up now lol speaking of dreams… My leg must have been painful in the night because I was dreaming I’d broken my ankle!lol it doesn’t even go away when I’m asleep!