77 Comments
Oct 1, 2021Liked by Gavin Giovannoni

Thank you, and yes, it is very helpful! I was diagnosed 40 years ago in 1981, with RRMS, and have now been in SPMS for several years. My MS is considered inactive, but I have many lesions both on the brain and on the brain stem and spine. I do have gait issues, vertigo occasionally and have experienced most of the symptoms listed at one time or another, as well as others. I refuse to give up, and I stay active, walking, gardening, volunteering with the Master Gardeners and the Humane Society. I am not on any DMT currently, and I see my Neurologist up to 4 times a year for check-ups.

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Oct 1, 2021Liked by Gavin Giovannoni

I’ve read this article and it describes my MS to a tee! At time of official diagnosis my MRI showed many lesions on my spine, whole brain and brain stem with one of the most significant appearing as a ‘chunk’ penetrating into my cerebellum! I have experienced almost all of the symptoms listed! I was started on Ocrevus as my first line treatment and it has been amazing for me! I went through an horrendous time for 18 months suffering from up to five seizures a day but after just over two years on this amazing drug things have calmed right down and I live with relatively little disability with my main symptoms being extreme fatigue and cognitive impairment. I actually view myself as a bit of a medical miracle and I do think the amount of exercise I have done over the years and still to this day has help to keep the disability at bay? I still manage to swim 2km a day (most days)-it’s my therapy!

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Oct 1, 2021Liked by Gavin Giovannoni

I find it refreshing to receive accurate and relatively detailed information. Your selfie newsletter has only been a recent discovery and I’ve poured over its contents. Thank you for being a breath of fresh air/clarity on this confusing journey.

I am one of those people who had difficulty getting diagnosed. Early diagnosis in 2008 was Fibromyalgia although I never felt that was accurate. Treatment was minimal.

I presented at emergency with arm numbness, trigeminal neuralgia and vision problems in 2014. This resulted in an MRI showing one lesion and a Neuro appointment. MS was not mentioned and no follow up given. At minimum I feel this was missed CIS. Between 2014 and 2018 I experienced ongoing bladder issues, Lhermitte’s, Uhtoff’s, TN, fatigue, gait issues and sensory issues in limbs etc.

MS diagnosis happened 01/2019 at the age of 64. In 2018 a new family doctor clued in to the relatively singular sign of Lhermitte’s and ordered an MRI. This showed 17 white matter lesions as well as one on the pons, and cerebellum. A 2021 MRI confirmed lesions in the CS at C3,4,and 5. These were not considered new but visible due to better imaging. My first med was Rebif (Mar. 2019)and later a switch to Tecfidera(Feb. 2020). I am radiology stable but I clinically show intermittent symptoms - milder TN lasting 4-5 weeks, greater fatigue, ataxia, and numbness in new areas such as lower legs and feet. I find Tecfidera close to intolerable with near daily reactions that sometimes escalate to full body flushing and bowel issues. I’ve hung in there for over a year. Recently I was denied a switch to a more efficacious med (fingolimod) due to my age, now 64. I am focussed on a better diet and doing functional PT for exercise. I am not risk adverse but feel I have been set aside due to age and supposedly lower disease burden. Six months ago it was suggested to me that I stop DMT altogether. Let’s wait and see what happens on an MRI scheduled after 6 months. I said no. I would prefer to be actively preventing future events.

I’m clearly on the escalation model, complicated by a late start, and being 66!!!

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Oct 1, 2021Liked by Gavin Giovannoni

Amazing insights for us PwMS, thank you so very much Prof for your time and efforts to break this down into logical bite size chunks for us all to read. (Not the fault of the neurologists) but in a clearly stretched system with most of us having just a 5 min phone chat once a year with our neurologists, information, reassurance and understanding is minimal - your provision is like a huge blanket of care. I can’t thank you enough

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Oct 1, 2021Liked by Gavin Giovannoni

Scary stuff but so very helpful. My various neurologists never explained this and only through your posts have I been informed. I have damage in very expensive real estate!

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Oct 1, 2021Liked by Gavin Giovannoni

No, your assumption is correct. Please continue. And thank you.

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Oct 1, 2021Liked by Gavin Giovannoni

Great thanks prof. G. It's vital to understand processes in the brain being PwMS!

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Oct 1, 2021Liked by Gavin Giovannoni

👋Good afternoon Professor G! from 🇦🇺 Yes, knowing how MS can affect the function of different parts of the brain and spinal cord will help understand MS. For some individual’s Knowledge and education is medicine💯

Thank you for taking the time to care for PwMS thoughts…. light + peace 😊🦋🌿🌻

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Oct 6, 2021Liked by Gavin Giovannoni

I got every symptom on this list in my first relapse and they (Canada, MS Clinic) STILL took forever to get me (f 34 at the time) on a highly effective DMT (Lemtrada, on my insistence). They forced me to fail through 2 front-line meds first, due to the two-tiered "fail up" system (and/or likely neuro not paying attention enough that things were not good, simply because I hold myself together well when in crisis--which some weirdos seem to take for the opposite, despite being told (by a surgeon) that I have one hell of a pain tolerance/constitution.

EDSS score 3+ on first onset, diagnosed in 1 "convincing" MRI (that I paid privately for in public healthcare to go around the PCP/GPs and ER docs (who wouldn't refer to neuro and) who couldn't get a clue what central vertigo looked like--even *I* knew I probably had MS). An ENT was the only clue-holder apparently (once I could coordinate walk again, I asked for a referral), because at least an ENT has sufficient training to rule out peripheral, and in central, vertigo. He did, less than 5 minutes. Immediately ordered public MRI (learned he'd wrote "MS-Brain" as scan type when copies requested) and urged me to consider also private-pay MRI for faster scan. Thought about it for 3 days then leapt. Best $900 I ever spent.

Baseline MRI 10+ lesions, small one in cerebellum (neuro claimed he couldn't see, I requested copies on CD + written report, so I know it's there) plus C-spine lesions (he also claimed we're barely there, meanwhile radiologists still admit to easily being able to see, if I bring it up first as me already knowing). I always suspected a tiny brain stem lesion due to the symptom severity ( but we have crappy old MRI machines here). Meanwhile, neuro played mostly dumb, despite letting me choose Lem after rapid-failing crappy 1st-line DMTs only later to reveal that is just his horrible bedside manner (let's not worry the emotional females attitude--this female is an aspie with more testicular fortitude than he has and I don't even have a pair lol). Glad I went nuclear w Lemtrada, been 4-5 years without progression *fingers crossed*...

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Oct 1, 2021Liked by Gavin Giovannoni

You note in the preamble that there are "things that can be done for each of the problems" and reference further on "specialised and targeted neurorehabilitation" for specific issues. Could you share some examples so that I might have a better discussion with my neurologist? Thank you.

I so appreciate these posts of yours; it definitely helps me to know more about this confounding disease.

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Oct 1, 2021Liked by Gavin Giovannoni

Thank you so much for your excellent help in navigating this disease. I look forward to your newsletter. There are so many things that I have been unaware of and can now ask better questions during my check-ups.

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Oct 1, 2021Liked by Gavin Giovannoni

You are not wrong! This post has already helped me understand why my long term symptoms occur (vertigo, unsteadiness). I know I have lesions in my cerebellum. Thanks Prof G! I’m waiting for an appt with my neurologist who I have not seen in a long while. I’ll be posing some questions!

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founding
Mar 9, 2022Liked by Gavin Giovannoni

Wondering if you have any experience with Tysabri causing cerebellum atrophy? 4 months into treatment I started having worsening cerebellar symptoms and exam with non lesional atrophy on MRI. It progressed so much and so quickly I stopped the Tysabri. Since stopping the Tysabri 11 weeks ago my cerebellar symptoms are starting to slowly abate. My ocular tremor is less severe, my extremity tremors are getting better, I’m experiencing less disequilibrium and heel to shin and antigravity tremors are improving unless overheated as well. I really attribute this to stopping the Tysabri since my symptoms got so much worse 3-4 infusions in but there is no research to support this with the exception of GCN related cerebellum atrophy and I have always been JCV negative. I am curious about your thoughts and experiences.

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founding
Dec 7, 2021Liked by Gavin Giovannoni

Prof G, What is your thought on non lesional neurodegeneration of the cerebellum in PwMS and how to advocate for ourselves as patients with our neuros who do not recognize PIRA or smoldering MS without new or enhancing lesions even with progressive symptoms and worsening neuro exam?

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Oct 17, 2021Liked by Gavin Giovannoni

Just re-reading a number of your newsletters before seeing my neurologist this week and so getting some questions ready! I'm concerned about getting the full picture from my MRI scans as over the past few years after regular MRI scans ( 2x yearly as on Tysabri) All I've heard about the results of the MRI scans are that they are stable ( good news) but I'm now wanting to know how many lesions are present and where they are located.

As you point out that posterior fossa lesions are of some concern I am interested to hear if I have any there as recently I've experienced vertigo ( sudden onset and severe for a few days and then much reduced, more like dizziness) which has never happened before. Also have long term hearing loss (high frequencies in particular but also find it difficult to distinguish clearly what people are saying even though I can hear them speak) and some mild tinnitus. Also in the same time frame there has been an unusual UTI (streptococcus haemolyticus) which was rather stubborn followed soon after by an ear infection. Infections were treated by GP but MS nurses informed.

I'm 62 and have been on Tysabri for nearly 4 years (JCV negative) with no evidence of new relapses as yet.

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Oct 6, 2021Liked by Gavin Giovannoni

I’ve just gone back to look at my diagnosis letter in 2014 to see if it mentions where my initial lesions were and it says ‘left superior and middle cerebellar punduncles’ so I’m assuming this is the area featured in your newsletter. I feel even more grateful for having Lem first line now as had no idea of my prognosis although was hit full on with the cognitive problems initially and still have residual language and memory problems - now I know why! Thank you Prof, fascinating stuff

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