Last reply 1 week ago
Diagnosis – the long and winding road

2001
Optic neuritis. Go blind suddenly – and fortunately temporarily – in one eye. Ophthalmologist sends me to neurologist. The neurologist tells me in a jovial tone to say that I have had optic neuropathy to insurers – if I say optic neuritis they’d put me down as having MS. MRI done. No follow up.

2003
I wake every morning with pins and needles / numbness in fingers. Go to GP and am told it’s nothing after I raise the MS question.

2004
Still pins and needles in fingers plus shaky jerky hands. Am referred to neurologist who says meh when I raise MS question.

2018
In December I complete wet myself on a bus WITHOUT even realising it had happened until I get off (oh yes, this is a disease where shame must be overcome). GP says meh, bladder infection after I raise the MS question.

August 2019
Sudden onset of a dizzying array of symptoms from legs – the ones you all know about (pins and needles, prickling, heat, not be able to tell if water is hot or cold on my foot, patches of heat on thighs and hip which come and go etc etc) to needing to wee all the time to dizziness. Go to new GP and miracle of miracles she takes me seriously. Am referred to NHNN (National Hospital of Neurology) after bloods rule other stuff out.

December 2019
First appointment with general neurology at NHNN. Take with me detailed chronological list of symptoms and possible relevant health issues. Get distinct impression that Dr thinks I’m a bit of a hypochondriac, this is backed up when I get the letter saying that I am taking amitriptyline – as prescribed by lovely GP – for “nerve pain” (her air quotes)

Tests nonetheless follow (PET, CT, LP, MRI with contrast). I get LP and MRI during lockdown by insisting on it.

March 2020
All symptoms gone, just residual loss of balance left.

June 5 2020
First phone appointment – General neuro tells me, sounding jaunty and jovial, “oh yes it does look like you have MS… nothing to worry about, no active lesions… probably benign” I hang up feeling both vindicated and relieved – after all, benign sounds OK to me.

July 24
First MS clinic appointment (phone of course). Consultant confirms RRMS – says benign is patronising (hmm, I liked the sound of benign myself). Says to choose between Aubagio and and Tecfidera and let his secretary know within 2 weeks.

So that’s where I am. Shell-shocked. Choice of drug which has side effect of, among other things, death (Tecfidera) and one which has side effect of the runs, hair loss and stays in system for 2 years (Aubagio) Veer wildly between ‘this is serious’ and ‘wish I’d never gone to GP / ignorance is bliss’. Feverishly look at MS sites and watch Dr Boster on YouTube 👍

Am sent two follow up PHONE appointments, one with MS nurse in October, one with consultant in July 2021. No details of how it works if/when I choose a DMD. Do I get blood test before starting? Do I not see MS nurse until October?

Tearing hair out by now. Husband is already over it / bored / shouting at me that the last week has been nothing but me talking about MS. I’m like, I’ve been diagnosed with a life-altering degenerative neurological disease, and have to make my own mind up between two pretty serious drugs…it’s not me being difficult if I’m talking about it. Sigh.

Thanks for reading this far! Off to see my lovely lovely acupuncturist now (whose partner happens to have RRMS) for some tlc and understanding.

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itsmewithms
1 week ago

Wow- what a journey. I had a blind spot in one eye in my second trimester of my only pregnancy that went away in the 3rd trimester but they didn’t want to do an MRI due to the pregnancy and back then (2002) not being sure if it was safe. Of course after having her and with no symptoms there was no suggestion to do the MRI then…so the summer she was 3 my foot was sticking out funny when we went for a walk in the park and that resulted in a visit to the neurologist, that happened to be an MS specialist, and a MRI with a definitive diagnosis. Not many DMTs were available then so I was put on copaxone which is now considered a safe MS drug although not as effective as some of the others.

I read that it often takes 4-6 years for a diagnosis which seems kind of crazy but I guess it took several years between my first symptoms, that were dismissed as a pinched nerve from kick-boxing and then the blind spot during pregnancy, and my official diagnosis. One I got to the right neurologist everything fell into place.

I’ve never tried Tecfidera or Aubagio but know they are pretty common. I think the Dr Boster videos are great and likely cover them quite well but if you search them using the little magnifying glass in the upper left or click the tags that should have been attached to your post you can check out experiences of other people on this forum-

Good luck! hope things slow down 😉


henrietta
1 week ago

@itsmewithms I love the Dr Boster videos! Thanks for sharing your story too, sounds amazing that your first neurologist happened to be an MS specialist. I’ve kind of instinctively known I had MS ever since the optic neuritis I guess. It’s just today I’m just wondering why I was so keen to get the diagnosis! I think I’ve been a bit surprised at how different I feel with it. I tend to be very impatient… I need to s l o w down, absorb and process I guess. Maybe it’s good as it’s going to force me to chill out and be less of a stress head.


stumbler
1 week ago

@henrietta , I’m afraid most of the MS Disease Modifying Therapies (DMTs) come with side-effects. They’re powerful drugs, to try and control a serious condition.

You should be closely monitored to ensure that the known risk factors are maintained within acceptable thresholds.

There are a range of DMTs available for MS. You might want to have a look at them and see if you’d prefer an alternative :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


henrietta
1 week ago

@stumbler Thanks for your reply.

I’m probably in some version of denial and should just take the drugs (have been offered Tecfidera or Aubagio). It’s just with such a long gap between symptoms (ON 2001 aged 37; sensory stuff 2019 aged 55) and having totally recovered from both the ON and last year’s symptoms, I’m wondering if I really want to start a DMD right away. I know the tip of the iceberg argument would say ‘do it’ to prevent possible future damage / deterioration and that it can be happening silently in the background, but a very strong gut feeling says step away from the drugs (at the moment at least). I’m in no way anti-conventional medicine though so am faced with quite a decision.

All this is complicated by my first appointment with MS consultant last Friday being over the phone – he said he’d show me the MRI if I was there, that he couldn’t tell how old the lesions were. I didn’t think to ask how many there were etc. Really not a fan of phone appointments. He asked if I could walk 1000 steps – I said yes but didn’t think to say I can walk 5 miles without stopping without a problem. I regularly walk 2/3 miles. I said my balance remained slightly worse but stupidly didn’t specify that I meant balance on one foot (used to be able to do it for around 10 minutes, now it’s around 4). So I’m wondering if he thinks I’m worse than I am. He’s put me down as a 2 on that EDSS scale for example.

Oh well, the pondering and processing goes on!


stumbler
1 week ago

@henrietta , it’s a personal decision as to whether you adopt a DMT or not. There are risks whether you do or don’t!

I wouldn’t get too concerned with number of lesions or EDSS scales……

Keep on with the exercise that you manage to do. Just “listen to your body” and act accordingly.


henrietta
1 week ago

@stumbler good advice 👍 it’s all a bit new so lots to mull over!

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