Thought I would come on here for a bit of advice been a while, So I was diagnosed with MS in 2018 by a general neurologist after all the tests and on and off symptoms for years, I have 5 lesions on brain 1 on the spine, since then been with a MS specialist who did not want to put me on disease modifying drugs as he wanted to watch me further he believes it’s MS but can’t say yes officially as I am not hitting the criteria for meds, I Had a full MRI last year no change in scans, had one in May of this year and spoke to the secretary today and she says my results show no change again no new lesions, this was a head MRI no spine, so I dare say when I see the Neuro in a few months he’ll say wait and see again, I’m guessing. I have had new symptoms from March of this year terrible pain and throbbing in the side of my head on the right side, not like my normal headaches, have been put on Amitriptyline 10 mg one a day at night for the pain, was on it for a month, came off it for 2 weeks then the pain came back, now back on it, very helpful with the pain, my question is has anyone else been through this?, am I at the beginning of MS?or is there a chance this might not be MS, is this the norm pattern for MS?
hi Melmel
when i was seen by an MS specialist, he wanted to be certain before giving a diagnosis.
i had to have 3 days of IV steroids, the results would be noted and again a week later.
i remember the ‘roid rage’ (thought i was losing my mind).
the criteria for meds is a tricky one.
they really should be shared with us (the patients).
the MS Trust have information on the Macdonald Criteria (google this).
good luck
xx
Hi, so firstly it a begger that you can’t get a definite diagnoses and you’ve got all these symptoms. Although I was given a diagnoses, I wasn’t given which type I had, as the neuro I was seeing just said MS, but in the first few month’s I was having a bad time of it, not classic relapses, but generally going down hill, so my MS nurse referrd me to Leeds to see a Dr Lilly, who was the neuro who could hand out DMD’s, anyway on 1st inspection he wasn’t keen on getting me on them as he said I wasn’t following the regular path, pity I didn’t know what I know now, as I would have said WHO DOES, so he monitered me for 18mths and then came the shock, yes it was MS and it was already SPMS, so DMD’s no good for me, I couldn’t believe it, but because I wasn’t having massive relapses and scans were staying virtually the same I wasn’t following the classic path. I now know another lady who had a very similar experience as me, we went straight in as SP. Over the years when I look back I think I’d had MS since my late twenties, because at that point I was DX’d with iritis, had bad tireness and a few balance issues, but I just got on with my life, I was DX’d at 46yrs, I’m now 61yrs. I have a sister that is going through exactly the same as you, she’s been back and forth for nearly 10yrs, it’s just not right, or fare, good luck love and don’t give up.
Jean x x
Thank you for your reply really helpful, I do worry about being left and then not havin a chance to go on the DMTs, apprantly my MS specialist is well known so I have been told to put my trust in him I do get he wants to be sure, how r u doing now r u coping hope ur ok ur symptoms are not to bad I hope? X
Thank you for your reply how long would u say it took you to get diagnosed, I do get they need to be sure, is frustrating, how ru doing now x
I was told the very first consultation that I had MS.
Maybe my story is a bit different though.
Many many years ago before being diagnosed I used to have pins & needles in my feet, my GP at the time sent me for an Xray, (no MRI’s in those days) the result came back with a bulging disc in my back, no need for surgery, the pins & needles came & went over the years, then a number of years later I started having having altered sensation in my hands, I put up with this for a few years until it it started to effect my work, I was sent to see a neuro who decided I needed an MRI scan (which was now available), I had a scan on my brain that the neuro said was clear, so he put the hand issue down to carpel tunnel, I was offered surgery but opted against it as I had only just started a new job.
So, about 6 years after this I then started having issues with my legs, weakness and no control, I went to my GP, explained these new problems and I also mentioned about the hands and feet thing from way way back, but more importantly I mentioned that my sister had MS !!
The look on the GP’s face was enough to tell me she was concerned.
I can remember that day like it was yesterday, the appointment was around 4.30pm, my GP instantly rang the MS dept at my local hospital and unbelievably the consultant picked up the phone, he was just about locking up clinic for the day, my GP explained all of my symptoms, told him about my sister and mentioned the MRi scan that I had done a few ears ago, the neuro told my GP to send me up the very next morning.
So next morning I had the consultation, was asked numerous questions about my symptoms ect, I then mentioned to him the previous MRI brain scan that came back clear, like my GP I could instantly read his concern on his face, he explained that he had taken a look at the old MRI scan and remarkably even though it was a scan of the brain, the images had also picked up the upper part of my spine, now all those years later and being a different neuro he could see lesions on my spine the previous neuro had missed.
It actually turned out that this neuro is also my sisters and my cousins neuro, (my sister & cousin have MS).
I was told straight away that he thought I had MS, but would now run more scans, bloods and a lumber punch over the next few weeks just to confirm, all of which proved positive for MS, but I came out of that very first consultation knowing that I had MS, he even said that he thought the symptoms that I had many many years ago was probably the start of the MS, and had nothing to do with a bulging disc.
So, for me there was no waiting for a diagnosis, but I do often wonder if things might have been different, as in being offered DMD’s if that first neuro had spotted those lesions.
Hi Melmel , over the years I have read many different posts from people like yourself.
They have classic symptoms, but the MRI doesnt give enough evidence for the neuro to diagnose them.
I was in the same boat myself. I had classic PPMS symptoms from onset…back 20+ years.
My drop foot caused many falls and put me in a wheelchair early on. Mobility was lost totally within 2 years.
I was having double incontinence issues. Stiffness and spasms were daily. Fatigue was chronic. PPMS was suspected.
I had to leave work at 48…retied on ill health.
I was monitored 6 monthly and saw a total of 17 neuros.
Repeated MRIs, Lps, EMGs, VEPs and blood tests.
Part way through this I was told I had HSP…a neurological condition similar to MS.
Not long after that, a genetic test proved it wasnt HSP.
For years I had a big fat ? on my forehead. I began to think I should forget looking for a diagnosis and my local neuro discharged me.
Then…now this is amazing…my daughter changed her job and was working for a movement disorder neuro, who was keen to see me…he did…he did so many tests and ruled out many rare conditions which cause my symptoms.
He diagnosed Spinal PPMS in March this year.
22 years it took…and now I am calmer mentally and feel at peace.
I do hate this disability and heavy dependence on others, but I know why I cant walk!
I wish you well on your journey.
Boudsxx
I think with me everything just fell into place at that exact time when I went to my GP on that day…
It was all meant to happen like that.
I had past history of odd things going on, the GP took into account my symptoms on that day and the fact that my sister and cousin also had MS so she rang the MS dept, unbelievably, she not only got straight through to the very MS consultant that looks after my sister and cousin, but he had instant access to my old “clear” brain scan that the first neuro did all them years ago ,as it was carried out from the same dept.
He more or less had all the evidence he needed right in front of him that allowed him to give an almost instant diagnosis, the only thing that was left was for him to tell me the next day when I went to see him.
He basically said that the new tests he was arranging were just a formality.
The rest, as they say is history.
I have to say though, 6 months after being diagnosed I very much doubted that I had MS at all, I really did think it was all a mistake, I had regained almost 100% of my mobility, no odd symptoms, everything was going great, and it carried on like this for around 18 months, then ever so slowly little odd symptoms started to re-appear, weakness in my legs, balance was not great, hands going odd again, but all happening little bits at a time.
7 years on an SPMS, and getting worse.
Apparently its very common for MS to initially pop up but then hide away again, which is why it can sometimes take a long time to be diagnosed.
Thank you so much for your reply and Reading your story, You must have been fuming that the first neuro missed the lesions, some of them are so so incompetent, so it runs in your family,I don’t know anyone in my family with MS, half the time they don’t even belive me lol, are you relapsing or secondary Ms?,how are you coping and doing now?, everything you have said is what I have been through, the numbness the tingling. x
You have really been through it, life really sucks sometimes, you seem like someone who is very strong with a good spirit, do you stand for a short while or not mobile at all, it seems its a tricky illness to diagnose, frustrating too, they believe stress makes it worst do you belive in that? sending love and light x
how are your family members doing with there MS, are you able to exercise ect and walk ok?, sometimes its like a bad dream but my neuro says if im not positive that is when I will start to go down, I don’t even know any more lol x
for me I can only walk a little around the bungalow I live in, or around the garden, but I have to use a walker as balance is rubbish, going anywhere else I either use a scooter, or wheelchair, exercise is a thing of the past, although I do still try, but then I pay for it. My sister isn’t doing that great either, I just wish for her that someone wouldn’t recognise what she’s got, which I believe is MS, she’s due to have another MRI, so lets see.
Jean x x
My cousin was the first to be diagnosed, I think she was in her teens, actually on her good days you’d never think she had MS, her mobility is rather good, I know she gets a lot of pain, and on bad occasions her vision has been known to almost go completely, I think she has daily injections of DMD’s to hold back relapses which she does herself, all her lesions are in the brain.
My sister was the second one to be diagnosed, probably around 15 years ago, maybe a bit longer, she and her consultant think that her MS probably started a long time before being diagnosed as she showed some symptoms many years ago that settled down. She had a very bad relapse about 18 months ago, she was in hospital for 7 months, it left her with far worse symptoms, at one point in hospital all she could do was move her right hand, couldn’t even speak and was tube fed, currently she still has almost no mobility, has to self catheterise, very poor balance, her speech is back but her memory and thought process is very poor. She’s now on DMD’s like my cousin.
Both my sister and cousin are still RRMS.
As for me, I’m now considered by my consultant to be SPMS, I’ve never really had a noticeable relapse since my first confirmed attack 7 years ago, however over these 7 years I’ve gradually got worse, mainly with mobility, I can still walk, albeit very slowly and no great distance, the muscle fatigue comes on very quickly to the point that I might be able to walk to the end of the garden but would then struggle to get back.
I 100% agree with your consultant that you have to keep pushing yourself, I still go to work on reduced hours, my company has also made adjustments for me, I just need that bit of normality in my life by trying to still go to work, I’m very stubborn and will push and push until I just cant physically go any further.
I’m not on DMD’s as I’m SPMS, I am on a 3 year trial at the moment for a drug that might help to slow down SPMS, Simvastatin, It’s a nation wide trial, I don’t know if I’m on the actual drug or a placebo, and wont find out until the end of the trial, as my symptoms have worsened since starting the trial around 18 months ago I can only guess that I’m either on the placebo or this new drug just dont work, not for me anyway !
Its amazing how incredibly different you have all been affected, so sorry to hear what you are going through and your family members, some people get it bad and others hardly noticeable, are u taking vit D I have been taking it in high dosages since been diagnosed as my vit D was extremely low, its good you are still going to work and you push yourself, I know the feeling of wanting some normality, you are amazing and strong x
Thank you hopefully things look up soon x