Mar 11, 2023Liked by Gavin Giovannoni

Prof gavin, I thought today's article was particularly brilliant. The way you dealt with expectations, fear and frustrations, illusions, apprehension, confusion, anger and for some, relief must have rang loud bells with all us who have sat in a room with others in our MS groups.

Perhaps we start to appreciate very early on that every MS case is a little different, but the way we deal with our own MS is very different. For many reasons we may not be beady to share the news but for others group meetings can be so helpful. My heart went out to another of your readers who was diagnosed during the Covid lockdown. At least they had someone close by to talk to

I can well understand that a patient may be shell-shocked after the diagnosis of their MS. I think it is the way you have recognised that everyone is so different in the way they receive the news that makes you a very special consultant and explains why I was so impressed with your article. Thanks so much.

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Mar 10, 2023Liked by Gavin Giovannoni

Prof G, I wish my neurologist was like you, I was told by a neurologist on 4/11/22 I had MS. I would be referred to MS clinic. I only needed to have a MRI with contrast. My MS clinic appointment was this week.

I had read your MS-selfie information as part of shiftMS review. I felt well informed before my appointment. I asked the Dr who was not the consultant I was under, what type of Ms I had and was it active. My response was a description of all types of MS and it does not matter which one I have. To the question of the MRI scan with contrast, did it show activity, I was advised it does not matter what the scans show…….

The treatment I am having for night time spasms I should be exercising instead of taking medication

I explained my MS symptoms were worse due to having Covid the week before so I was still not feeling great. I was advised the MDT would decide what treatment I could be offered. The exact words it would unlikely be a step one but prob a 2 or 3 . No explanation of what this means.

I left the consultation in tears .

I’m very lucky I have an MS buddy who is amazing and supportive.

Follow discussion with my Gp this morning who agreed to ask for a second opinion and advised me to contact PALS. She continued to prescribe medication for spasms.

When I arrived home I had an email from the hospital advising following discussion worth my consultant I have RRMS and I will be discussed at the next MDT for treatment.

If only all services tried to work the same. It’s easy to show compassion and if you can’t answer say I don’t know I will find out.

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WOW - if I could go back to March 1990 (year of diagnosis), I would want to read this article - the questions you answer would have saved me a lot of angst - I live in Canada, and never knew lumbar puncture was a diagnostic test for multiple sclerosis - I only had an MRI - I don't think I had any blood tests either - I am saving this article for future reference - thank you

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Mar 11, 2023Liked by Gavin Giovannoni

All too often the problem is that patients have no idea what to expect (why would or should they know this?) and they rely on doctors to "do the right thing" by them - which also too often is a misplaced trust. Social media as a source of info on what to expect can sometimes be helpful but far too often it is misleading with people often telling as-yet-undiagnosed patients to demand certain tests, especially lumbar punctures (which are inevitably claimed to be the "definitive" test for MS).

As a "newby" to dealing with a possibly significant health issue I was totally ignorant about how it all SHOULD happen, and I had not spent any time on Google otherwise maybe I would have been a little wiser - despite the pitfalls of Googling stuff! Even though this was only a bit more than 10 years ago I was also not on social media as it was not something I saw as being needed in my life.

The first neuro I saw told me it wouldn't be MS because it didn't "fit the pattern" but he had sent me away without any referrals for MRI or any other tests - and I didn't know that he should have been organising such tests to be done or what those tests should have been. He had the audacity to write to my GP saying that it was up to me if I wanted to continue seeing him - wording his report to make it sound as if it was my decision to not get appropriate tests done. I had booked an appointment with him because he only had a three week wait for appointments, I had had all the blood tests he required done prior to the appointment, had travelled some 250 miles to see him, and paid a big fat fee to do so because I had to see him privately and not on any Govt funded health services - all for a big fat zero outcome. When I later found out from others in the neurological field that he had a history of and reputation for only seeing patients once I then knew why his waitlist was three weeks when the Govt health system had waits of 6 months of more, even for urgent category patients.

After a great deal of self-advocacy and gentle persistence I finally got to see Neuro No 2 several months later, and an MRI was ordered. Five months after that first appointment, I was told I had MS in a very rushed second consultation that was running two hours behind time (airline hold-ups with fly-in neuros plus overbooking of appointment schedules). The radiologist's report from the MRI done four months earlier had noted that everything found was consistent with a demyelinating disease (I had multiple lesions in brain and both C & T spine) and not the "small vessel ischaemic disease" which was thought likely due to me being at a ripe old age of 55. The neuro had received this report but apparently didn't think anything in it was urgent enough to try and expedite me getting an earlier follow-up appointment (my GP had also received the MRI report and discussed/ shared it with me so we both knew its content, but she could do nothing to expedite things in the public health system).

At the follow-up appointment the neuro had no computer access to the radiology system and asked me if I'd brought my MRI scans with me on disc but no-one had told me I'd need to ask for them on disc, let alone bring them with me (this was 10 years ago). He then had to go to the radiology department to look at my scans. He had also told me at my initial consultation that whatever I had it wouldn't be MS because it "didn't fit the pattern" and nor did I as at 55yo I was "too old" and had no evidence of "acute episodes" of dysfunction/ symptoms.

He came back from the radiology department, patted me on the knee, said that I did have MS but because things were running so late he didn't have time to talk to me about it, and would phone my GP to discuss it with her and tell her what meds to prescribe (it was Rebif he wanted prescribed and my experiences with that drug are another whole disaster story for another day.....). This neuro was not a nasty or unfeeling man, in many ways he was as much a victim of a permanently under-resourced and over-stretched health system as I was. However, like first impressions, there is only one consultation when the diagnosis is told to the patient, and the way it is done can't be undone - there is no "rinse and repeat" option available to either patient or doctor.

I also learnt after my diagnosis that if I had had any bad episodes which required attendance at an A&E department I probably would have been diagnosed at least a year or two before I saw the first neuro. The thing that still rankles with me is that my MS diagnosis was a couple of years later confirmed as PPMS by a third MS specialist neurologist, so even with no "relapses" but what I now know were classic MS symptoms PPMS should have at least been on the radar with the previous two neuros as with PPMS I'm not a one in a thousand person, or even a one in a hundred, but a one in ten. And by the time I saw Neuro No 1 my symptoms were not mild and were having a significant effect on my daily life and functional capacity.

And last by not least, I'm not in some third world country with very limited health services, I'm in a first world country with strong Govt funded free public health services, and I still got put through the mill. Is it any wonder that so many people are now distrusting of the medical professional and turn to Google and the internet and social media..............

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Mar 18, 2023Liked by Gavin Giovannoni

Thank you so much for this excellent podcast...which I found thanks to an internet search. I am nearly 2 years into my possible MS limbo-land. Partly NHS delays, partly genuinely unclear results/need for dissemination in time.

I understand the many pitfalls of Dr Google - information that is partial, plain wrong, manipulative, quackery, misleading, out of date, and so on.

However, the reality is that it takes months to see an NHS doctor for diagnosis, and between appointments there is no information or support whatsoever, especially pre-diagnosis. Who would not look online? It's free, instant and available 24/7.

Perhaps what we need is better science literacy, so that we can know how trustworthy different information sources are?

While waiting for diagnosis, I've found that reading about, and trying to understand, some of the MS research has actually made me feel better able to cope with the potential diagnosis. Of course, I'd prefer to check out what I think I know with a proper neurologist to guide me, if only that were possible. But I've now, thanks to the internet, pulled back from the brink of despair and reached a stage where I feel I will be much better prepared for any appointment, more able to respond rationally and more willing to engage with treatment. I've also reached a stage where I don't want any sugar-coating. After all, I have to make decisions about things like job and long-term finances.

Having said that, I have been through a lot of the trauma on my own, without anyone to "hold my hand": that's more due to NHS delay, not Google. And of course I'm anxious. If I weren't, there'd be something wrong with my head, right?

I have a few tips for neurologists diagnosing, from my non-randomised "case study of one":

- Don't pussy-foot around too much. If you drop hints about MS, without using the word, your patient will wonder why you're doing all these tests, google - find out anyway. And possibly not in the best way. We can also learn that a diagnosis is still uncertain.

- Don't underestimate our ability to think long term, especially once worst of the initial shock is under some control. I'm concerned about my health at age 60, 70, 80, just like someone who does not have ms would be.

- Talk to oncologist colleagues about how they handle these conversations. My Mum had terminal, acute leukaemia. I attended most appointments with her and I am interested in the difference between neurology/haematology. Her excellent haematologist was totally up front: - it's terminal (weeks or months), treatment might delay a bit, treatment has nasty side effects. They seem more used to dealing with this, and the honesty, the lack of beating about the bush, really helped my Mum decide what treatment she did/did not want. She signed a DNR. We moved on quickly to talking about how and where she wanted to die. Both of us wanted to talk about these things - but we found even some HCPs did not want to talk to us about it. Even those who worked in palliative care were sometimes reluctant to talk about death. .... As a possibly-MS patient I want these honest conversations, along with an acceptance of my priorities, including that at some point in the future I may decide I do not want to carry on living, beyond some level of disability. Others will feel differently. Consultant oncologists are used to respecting patient preferences on this sort of thing.

- Be aware of the potential for communication problems if you happen to be a non-native English speaker (like so many of our fantastic NHS staff) or are wearing a mask. Some HCPs just did not have time to repeat things often enough so that my (rather deaf, but cognitively acute) Mum could hear their words. My Dad, who also attended some appointments, could not hear a word and never said anything. My Mum would feel embarrassed asking for them to repeat again, not wanting to cause offence, and just pretend to have heard, then asking me to explain it all when the HCP left the room.

- A simple one: Use email. Offer an opt-out to anyone who is not online/has concerns about data security, and for everyone else, email us. If you can't type, try voice recognition software. If I have waited 8 weeks for an LP result, which might determine my diagnosis, I don't want to wait another month for a dictated letter to be typed by a secretary, and then 2 weeks for a bizarrely-slow post service. Especially given that I travel for work so I do most things online. Remember, between appointments, those of us awaiting diagnosis are probably thinking about this *all* the time. I actually missed one MRI because a letter took 7 weeks to reach me by post after being dictated by the neurologist... It is also common that secretaries - perhaps overworked - do not answer the phone, do not take voicemail, and do not always answer emails. Probably because they are busy typing letters. All of this makes the diagnosis process so much harder.

- Access to data. Sometimes in the NHS we are told that we cannot have results because they need to be given to us "by a doctor". Only, there is no doctor. I once spent 7 hours in A&E overnight, when I could have gone home, waiting for the outcome of a simple blood test. The triage nurse had it on her computer, but she turned the screen away so I couldn't see it and wouldn't give me the result (platelet count: and it was fine...).

- Accept that a patient may want a second opinion. From me, at least, this is not criticism. My neurologist seems to be doing a great job. But he says himself that things are uncertain. And MS is hard to diagnose. And the diagnosis is critical to get right. So much of my future health is at stake. So if I seek a second opinion, I hope he will see that this is not at all a criticism of him. On the contrary, it should help us both to make the best decisions. Why struggle on your own when you have colleagues?

- Be aware of differing family situations. Not all patients have families. As a single woman I find it a bit annoying when I get a letter saying that I "must bring someone with me" for something at the NHS. There is nobody. No chaperone. Just me! Presumably I'm still entitled to treatment?

Thank you again for opening up this debate.

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Mar 11, 2023Liked by Gavin Giovannoni

I have literal PTSD from the decades I spent severely disabled by MS while the NHS denied me healthcare. I tried every GP I was in the catchment area of, and every one refused to refer me.

I tried writing to GPs detailing my symptoms and the referrals I needed. They refused. I had people with me at appointments; made no difference. PALS were literally no help ever.

When I was in hospital, I was refused access to a neurologist or an MRI scan. I was instead referred to Psychological Medicine; I was misdiagnosed with Chronic Fatigue Syndrome. They gave me Cognitive Behavioural Therapy and lots of psychiatric drugs.

If I had it over, I'd go to my MP and the press but I was too ill and traumatised. What got me the right diagnoses was eventual internet access (Dr Google is amazing, but requires money), and a credit card so I could go private. I never did and never would have gotten the right disgnoses from the NHS.

Things that would have helped: if one could self-refer to neurology. GPs are gatekeepers that I could not get past. Or if there'd been a pathway guaranteeing someone with neurological symptoms access to neurology and an MRI scan. Even a disgnosis of Optic Neuritis didn't give me access.

GPs even refused me private referrals. I contacted every private neurologist in Hull but they wouldn't see anyone without one. I now know some neurologists in other cities will see patients with no referral, and one can pay for an MRI scan with no referral.

When I did manage to see a private neurologist, decades too late, I told him I have MS. He did my first MRI, lumbar puncture, & evoked potentials. Follow-up appointment; I saw his assistant who didn't tell me the test results or my diagnosis. When I asked, she said: 'I thought you already knew.' I asked if they agreed it's relapsing/remitting, she went to ask, came back and said: 'Yes'. I was told nothing else.

I constantly ask myself: why did the NHS percieve me as worthless? Is it because I was too ill and they're not used to people undiagnosed presenting that way? Is it socioeconomic bigotry as I fall into almost every disenfranchised group? Was it just to save money? 🤕

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Mar 10, 2023Liked by Gavin Giovannoni

I was initially semi-diagnosed (I think she told my what they suspected/why they were doing testing) in an emergency department by a pediatric (I was 32, just rotations I guess) neuro resident who was on an overnight rotation. She came to check on me the next morning before she went home, and it was about the kindest thing anyone has ever done for me.

When I was first diagnosed I asked a trusted friend with good critical thinking skills (a neurology PhD, by chance) to do me the favor of performing internet searches for me. That way I would not see the upsetting or misleading stuff and she would report the answer back to me. I think I only needed to call upon her a few times before I got my own bearings.

I think it's interesting that you don't recommend your own newsletter to newbies - I don't either! I'm impressed at your self-awareness :) I like to refer newly diagnosed people to Dr. Aaron Boster's YouTube channel, because he starts very basic and emphasizes that there are little things you can do to care for yourself that make a difference.

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Mar 10, 2023·edited Mar 10, 2023Liked by Gavin Giovannoni

I was diagnosed during COVID and so was diagnosed on the phone. The doctor who gave me my diagnosis had assessed me in person at the hospital a few weeks before and was apologetic about diagnosing me on the phone. I didn't mind because it meant I opened a Word document and typed as he spoke, knowing it was likely I wouldn't be able to take things in properly (like you say, only taking away from the conversation that I have MS). He was clear in emphasising that this was one of the better things they could have found on my MRI scans, that there are treatments available and that since I am medically young, my prospects overall are good. Being diagnosed on the phone also meant I could go into the other room immediately after the call, tell my partner, cry and be comforted.

I haven't yet seen any of my MRI scans though would like to, and unfortunately I haven't spoken to the neurologist who diagnosed me since diagnosis...

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Mar 10, 2023Liked by Gavin Giovannoni

Thank you prof for this newsletter. Its good to add that MS (at least RRMS) is not the same disease like it used to be. And maybe in near future we will have more better drugs which potentially will even stop it. Its good to tell patients that viruses cause MS and in order to get rid of MS we need to invent EBV vaccine. Have you ever imagined that day when we tell ourselves: "we don't have such disease like MS, we found a cure or vaccine". I often dream about such day...

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Mar 10, 2023Liked by Gavin Giovannoni

Dr Gavin, not completely related to this newsletter, however, how do you decide what medicine to put someone on? I wonder why doctors still put people on the ABC drugs or the middle ones like Tecfidera and Vumerity, if Tysabri and Ocrevus have so much better results...

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Mar 10, 2023Liked by Gavin Giovannoni

PALS should be effective but actually isn't at the minute. At the beginning of December, I was given only a half dose of ocrevus even though it should have been my second full dose. I complained to PALS and I then hassled the unit until I got my second dose. At the end of January I had an email saying they were still investigating. Saw neuro who knew nothing about the complaint last week, so I emailed again. Today I was informed that they will get back to me in the next few weeks.

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Thanks. I obviously can't speak for other patients. But I might come back to this as and when some more settled view is reached on my diagnosis.

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I was diagnosed in the US Navy in 1993 at age 22. I woke up one day with numbness, slurred speech and right sided weakness. This was just before I was to take holiday leave (I was stationed in San Diego). The Navy doctor told me to take my two weeks leave and come back if it got worse. It did. Reported back to the Balboa Naval Hospital and I was admitted. They did all the standard tests (LP, MRI, CT, etc). I was diagnosed with "probable MS" in about a week. I was told at that time that pwMS could expect one of three possible outcomes: ambulatory, wheelchair, or bedridden. Days later Betaseron was approved by the FDA but I didn't start a DMT until around 2000. First Avonex, then Betaseron, now on Ocrevus. Now 30 years post diagnosis I'm 52 years old with an EDSS of 6.5.

All in all I think my diagnosis was fairly quick.

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