@Henrietta

Last reply

Henrietta

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.

ItsMewithMS

@ItsMewithMS

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

@Henrietta

@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

@Stumbler

@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

@Henrietta

@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

@Stumbler

@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

@Henrietta

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

cameron

@cameron

I'm at the National too. Who's your neuro there? i've always found the nurse team very good but they are working under very difficult conditions at the moment of course. Be reassured too, that the neuros are all MS specialists and very likely involved in research as well as seeing patients. That's a big plus because you don't have to worry that s/he is not up to speed with the bigger MS picture. xx

DanGooch

@DanGooch

@henrietta To say it's a lot to take in is a colossal understatement and, as one who was also recently diagnosed with RRMS, I do feel for you. Just on the topic of topic of drugs, everything everyone else has said is true but I wanted to say that I shared your dilemma. I'm not anti-conventional medicine, either, but few would choose to start taking what are, as @stumbler says, powerful drugs unless they absolutely have to. So during my first post-diagnosis chat with my MS nurse I asked what was the harm in deferring commencement (irrespective of which drug). I must admit, had she asked 'Until when?', I would have said I didn't really know - it was simply that the instinct was to delay. Her reply was that the risk in putting it off is that one might at some stage suffer a relapse and not recover (or recover completely) from one or more of its effects. That was enough to persuade me to accept a recommendation of Tecfidera. I've now been on it a month (first follow-up appointment today) and so far I have been pretty ok - although I don't imagine that's anything other than coincidence. I understand that 'they' are quite good when it comes to keeping an eye. Thus, for instance, with Tecfidera there will be regular blood tests to check that the white blood cell count doesn't drop to the point where there is a risk of susceptibility to that wretched brain virus thing. The severity of side effects will always, I guess, be a matter of luck but again with Tecfidera the explanatory notes do say that the worst are usually experienced within the first month. There will be countless other users out there who would be able to comment far more authoritatively. Hope this helps.

Henrietta

@Henrietta

@Cameron Dr Brownlee. He said he was 'anxious to start me on treatment' on July 24, gave me a couple of weeks to decide which - said he got nervous if people didn't get back to him within two weeks. A few days later I asked - by email - what happened if I chose not to take one (it was hard to remember everything when diagnosed by phone) and was told I would be discharged altogether, back into general neurology. I told them on August 4 that I had chosen Aubagio. Since then I've had one letter telling me I had an appointment in the clinic mid October - I had to ring to ask what it was and was told it was for an MS nurse. I've not been given a named contact. I had an email back week ago, from neuroadmin, saying I would have an appointment 'in the near future'. I emailed at the end of last week to ask what the timeframe might be and work up today to a fairly curt reply saying I had an 'education' appointment on Sept 10, by phone, no details of when I may actually start Aubagio despite Brownlee's stated anxiety to get me started. The email seemed to think I'd made a fuss about phone appointments but I hadn't. I feel fairly dismissed, as if I'm making a fuss. I did not want my first contacts with my specialists to make me feel like this. I've seen other posts here where people have been recently diagnosed and they have already spoken to their 'lovely' MS nurses and it's making me feel sad. @dangooch when were you diagnosed? Great that you already have an MS nurse! I decided on Aubagio but have absolutely no idea when I am going to start. As I say above, I was told in no uncertain terms that if I didn't choose a DMT I would be discharged.

Henrietta

@Henrietta

@cameron - OK I've been onto the MS Society Helpline - had brilliantly helpful long chat which has made me feel a lot better. I now know where my confusion about the timeframe to start DMT arose - the word 'anxious' (to start treatment) implied to me that it was urgent, I think what was meant was 'keen'. So I'm a chilled bunny now. Apparently it's normal for it to take a couple of months, even without a pandemic! Phone appointments aren't great, though of course I understand why they are necessary.

cameron

@cameron

Do PM me. I'm with Dr Brownlee and can't fault him, but i don't like commenting on a public forum about an individual.

Henrietta

@Henrietta

@cameron will do. To be honest I regretted naming names after I posted but there’s no way of deleting and it was outside the edit window too... I have absolutely no problem with him I hasten to add!

DanGooch

@DanGooch

@henrietta Apologies for the delay in replying - but glad that you've had a constructive chat in the meantime on the Helpline. I was diagnosed in mid-April but by the time the MDT had met to discuss my potential eligibility for different DMTs and I'd had my introductory chat with one of the MS nurses and had the initial bloods done to check that I was ok to start on Tecfidera, another three months had gone by. So the kind of time frame you're talking about seems right. I'm glad you're feeling more chilled. The only thing that surprised me was your being told that you'd be discharged to general neurology if you declined to accept the offer of a drug. Heaven knows, I'm no expert but it stands to reason that a patient who is not on a DMT is entitled to exactly the same level of specialist advice, guidance and support from MS clinicians and nurses as one who is.

Henrietta

@Henrietta

@dangooch Hi. It’s good to know that I’m in a similar timeframe... really so helpful to have your feedback so thanks a lot. I can be pretty impatient so I’m going to have to learn to be way more chilled! Yes I did think the letter saying take the DMT or we discharge you was a little harsh, as did the person I spoke to on the MS Society helpline. I suppose it’s academic since I’ve decided to take one anyway so I’ll let it go... How did your first follow up appointment go? Hope it went well.

Galina

@Galina

@Henrietta What a jorney you have had before getting diagnosed! And it feels so familier to me "wish I never go and see my GP". Exactly like I'm feeling now, after 1,5 years living with my ms. Who knows how long I have been having this without worring about my feelings in foots, hands, no balance... And what? As a lot of people saying - o yes, me also have a numbness and fatigue and what? My journey to diagnos was a very short one. January 2019 - visit to GP to take a blod test and by the way mentioned numbness and some weekness in foots. It was my first vidit, I havevnever been on sick- leave before. My doctor (75 years) looked seriously at me and asked - what abour eyes? And I mentioned - o yes, sometimes a feeling of difgiculties to fokus my sight but it doesn't matter. And the doctor gave me prescription for MRI and wrote (ms?). And after 4 weeks I was on consilium where several Neuro and radiographers decided over my diagnos - PPMS. A lot of leisons all over - brain and spine but negative Lumbal pucture. Since March 2019 my Neuro observing dynamic and I was told - we are not insisting on DMD but if you insisting - you can get it... Me? I was lost. Now after 1,5 years new MRI, new Lumbal puncture. All the same. But now Neuro advised to start with Ocrevus but first one more consilium. I am fine I am working. Talking about my ms, arguing, over-reacting, loosing some communication skills and thinking - "wish I never visited my GP"... 😉

Henrietta

@Henrietta

Hey there. Yes I still slightly wonder if I’d be better off not knowing - ignorance is bliss and all that 😉But most of the time I’m glad I do know so that I can take steps to minimise the chance of further attacks. And to throw in another cliche - better the devil you know I guess. I’m in quite a different place to where I was back in July, feeling much more accepting of the diagnosis. I started treatment (Aubagio) at the end of September so here’s hoping it’s doing some good. I’ve read lots of good things about Ocrevus so I hope that you can get started on it soon (if that’s what you decide to do).

1

Galina

@Galina

Thank you and keep strong! Yes, I will start with Ocrevus as soon as it will be possible.

1

Pragmatic

@Pragmatic

Wow... really hate 'relating' to insensitive care, really hard 'relating' to lack of understanding... We then realise why we've distanced ourselves from folk we know?! I dread the question "how are you?". I enjoy the escape of meeting individuals that don't know 'the story'... they only know 'me' as a 'person'. The 'me' sharing a joke, sharing moments, the excitable individual enjoying the nourishment of coversation... without 'a story!' X

1

Edith54

@Edith54

I had a terrible time getting a diagnose. First symptoms 2009 with numbness and tingling in hand. 2011 blind spot and visual disturbance. Told by doctor to go to optics ions. Waited 11 months for scan and told a white mark on scan but it was on the film, nothing to worry about. 2012 carpal tunnel op for my hand, obviously didn't to any good as I had ms! Problems with leg and foot started in 2014. Told at least six months to have another scan so went private in the November, paid for my own scan etc had a diagnose in two weeks. Back to NHS no drugs as I wasn't having relapses, told u got about 15 years until disability starts getting serious. February 2016 diagnose changed to secondary progressive. October 2017 had to give up work. Now incontinent and cannot walk. No drugs except for my ms hug. No physio since Oct 2019 as I have had my quota. Nothing for secondary progressive. Asked ms nurse in June 2019 if I could see specialist as my other leg stopped working ,told no it was just progression. Last saw my neurologist in February 2018. My life in now sitting in a chair relying on my husband for everything. I have one weak arm due to my ms and then a frozen shoulder. All I can advise is do not be polite like me, don't take no for an answer. Fight for a diagnose and treatment. Too late for me but not u. If I had had treatment in the beginning life would be very different. Good luck.

3

Joajoa

@Joajoa

@edith54, I’m so sorry for what you have been through- keep fighting for you!!

2

Henrietta

@Henrietta

@edith54 It seems like you didn’t get a diagnosis until you were SPMS which is appalling 😥 Am I dreaming or is there now a DMD for SPMS - sipomid or something? Hassle the hell out your neuro to get it if so - it could make a difference? Mind you, they don’t sound at all pro-active. Is there any way you could change to another neuro at a different hospital? I think we have the right to do that if things are so unsatisfactory. Anyway sending big hugs x

Galina

@Galina

@edith54 Hugs to you! And I was so critical to healthcare in my country. But it looks they are doing quite good job. I rely om my Neuro... Keep strong.

1