tkta2017 24/03/17
Last reply 11 months ago
How were you told your diagnosis

Hi,

I’ve just joined this site as I have been reading up on a lot of your comments and found it very useful and friendly. I have a few questions and I’m hoping you could help, just generally feeling fed up of all the waiting and no answers. So was wondering what you guys might think.

MS has never entered my head until recently, my symptoms are- arm weakness only right side which comes and goes but becoming more often than not recently. Been happening for about a year now. Leg weakness again right side. Nerve pain which is very painful & comes and goes mainly right side calf, back of leg, foot and in my arm but have started feeling it on my left arm and foot recently as well. Constant Back & hip pain, stabbing headache right side that come very quick and go quickly but painful been having these about a year too. I had one occasion where my right eye went totally black but only for a few mins. Very Tired after doing things cleaning/walking/shopping etc to the point of having to go to sleep.. random finger/toes moving on there own and muscle twitches. I’ve been told I have nerve impingement on my lower spine which I thought was what was causing my leg problems but the arm and head/tiredness doesn’t seem to fit. Been prescribed pregablin which is helping a little but pain still there. Anyway was given a full check up of ct scan bloods etc from a Referal to TIA clinic from doctor and all came back clear, the consultant wanted to do me a MRI brain/cervical spine just to rule this out. I had this done 10 days ago ive rang today and the results are back but the secretary couldn’t tell me anything and that the consultant usually writes to you and should hear over the next 10/14 days. My question is would you say it sounds as though it’s all clear with it her writingto me? Would they ring if MS did show? Thanks for reading and sorry for the long post..

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stumbler
11 months ago

Hi @tkta2017 and welcome.

It is frustrating when you body has problems and you’re searching for answers that aren’t forthcoming.

MS is just one possibility, although MS is notoriously difficult to diagnose. The MRI should give your Neuro some more pointers regarding what’s going on. However, MRIs are not always conclusive.

And the criteria for diagnosing MS are quite specific, https://www.mstrust.org.uk/a-z/mcdonald-criteria .

Your Neuro will contact you regarding the next steps, whether it’s a further consultation or further testing, It would be unlikely to receive a diagnosis by post.


tkta2017
11 months ago

Thanks for getting back to me @stumbler. I suppose I just need to wait for the letter and see what is to come next. Your so right, It’s so frustrating wondering and not knowing what it is going on with my body and feeling like I’m just moaning all the time, I’m sick of hearing myself lol. Thanks for the info too very helpful 👍🏻


stephz
11 months ago

Hi. Yes the wait is the most annoying. I was told by letter that my brain MRI was not ok. The letter only said that the brain MRI showed areas that suggest lesions and that I now had to go for a lumbar puncture. Those results went missing between my neurologist and GP and I was then told in person at an appointment that indeed it was MS. And that was that…with hindsight I should have asked my boyfriend or someone to come with me just in case. Which is my recommendation if you’re going in to discuss results.


potter
11 months ago

I was called by my neuro and was told of my diagnoses and to set up a appointment to pick a DMT. I thought this should have been done in person with a counselor on hand. I cried for two weeks and then it was time to go to war with MS. Potter


gingeral
11 months ago

Hello, the consultant rang me the next day to say they’d found inflammation on my scan, then had to wait 2 months for an LP which I had a month ago and heard nothing yet so I’m assuming clear. Hate waiting!


tkta2017
11 months ago

Hi thanks all for your responses. How long after did you receive the letter after the MRI @stephz how awful that you had to wait all that time and then find out they were lost, to then be told on your own, must’ve been a shock!?

Thank you @ gingeral for your reply, sorry to hear your still waiting it’s so frustrating not knowing & 2 months wait.. wow!! @potter how long did you have to wait for the call, it must’ve been a shock to hear, it’s bound to be emotional to hear for definite? I have been told my results are back as there was a back log im just not sure if my consultant had read them yet. So far I’ve still not heard anything so assuming no news is good news!


potter
11 months ago

I waited a month before I got the call, I just felt like it was a thoughtless way to notify someone. Who knows someone who is familiar with the disease might just go jump off a cliff. I had two aunts who had MS before they had any treatment and knew what they went through. Potter


isaacson72
11 months ago

That is frustrating. The neuro I originally saw, who diagnosed me, did warn me a few times that he thought it could be MS but wasn’t totally sure, and then had me to additional tests. So by the time he finally said “you have MS” I pretty much already figured that was it. But the final straw before that was he said my MRIs showed numerous lesions (both in brain on thoracic spine), I had to get a lumbar puncture. I did that…. and he went on a 3 week long vacation. He was a sole practitioner so nobody else in the office to give me results. And it was over Christmas, too. So rude, I thought. At all my follow up appointments, pretty much all he had to say about MS was that it was “weird.” He must’ve repeated that 5 dozen times. Smart guy, for sure, but terrible speaker. Hmmm. Maybe he had MS too. 🙂

Now I see a neuro in Seattle with Virginia Mason MS Clinic and I cannot say enough good things about him & the clinic. I get results the SAME DAY. Just did MRIs again a few weeks ago… MRIs at 1:30, neuro appt at 3:30 with results. I love them. I hate that I have to be a patient, but their customer service is second to none. Even if I email him a quick question, he always responds the same day. I’m very lucky to have found him.


stephz
11 months ago

Hi again – it was about a month between MRI and getting the letter – not uncommon in the NHS. 2 weeks after that I had the lumbar puncture and then another month to the final diagnosis. It was a mix of shock and relief to be honest – shock because it was final and MS is life changing – so I sat in my car and cried for good 15 minutes before driving home – and then cried some more when I told my boyfriend and parents…And relief because I was really worried that I was imagining all of these symptoms.


ss17
11 months ago

I originally went to the Gp in the summer of 2012 with strange sensations in my arm and leg, had blood tests which showed I was seriously vitamin d deficient. High dose vit d supplements corrected the deficiency but sensations continued. Gp referred me to neurology. Had my first appt with them 2012, he did some basic tests – reflexes etc and told me he thought it was nothing to worry about and that the symptoms would go away themselves but as reassurance he’d send me for an MRI. Had MRI in December, didn’t hear anything more about this until February when I got a letter for an appt in March. At that appt I was told the MRI showed some inflammation and that one possibility was MS, had more blood tests and then a lumbar puncture in May. I was called in for an appt to discuss the results and I was diagnosed with MS in June 2013. Completely turned my world upside down and I cried for months. Over time feel like I’ve learnt to accept it but still struggle with my feelings about it and how much it changed me…I still miss the person I was before.

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