Scared of disease progression even with DMT (long read)
I’m relatively new to this whole MS thing having gotten recently diagnosed and I haven’t had enough time to process this given that I’ve been distracting myself with work so much. To my detriment at times.
My diagnosis has been a bit weird and quite dramatic but I’ll just vent here and hopefully someone can relate or at least offer some perspective. This is going to be a long post so hopefully you make it to the end. :)
It all started on 8th February (dark day indeed) when I just woke up with a number of symptoms all at once. My original symptoms were brain fog and confusion, dizziness, nausea, balance isssues and vertigo, double and blurred vision, headache, extreme sensitivity to light and sound. Over the next couple of weeks I bounced from GP to GP (private) while I kept getting worse until I eventually got through to a GP who misdiagnosed me with BPPV and ordered that I go to the optician to get my eyes checked out in case something else was happening but I was not convinced and asked him for a referral to a neurologist which he happily provided.
The first neuro(private) I saw ordered a head MRI and said that I might have MS but he couldn’t quite confirm it because he wasn’t sure because of my country of origin and wanted to rule out a lot of diseases that could mimic MS ( I was born and raised in a country that is crossed by the equator pretty much all my life where MS is very rare.) He did mention that I did have multiple lesions and evidence of old inflammation. He also showed me the lesions that were causing a lot of my symptoms especially with my vision and I was happy to actually get an answer after weeks of uncertainty. He then referred me to in patient neurology department at the Queen Elizabeth hospital since I was steadily getting worse for further investigation.
While in hospital waiting for all the tests to be performed, I was getting worse and started experiencing numb right hand and burning sensation in my feet and legs. On top of worsening prior symptoms.
After the spinal tap (came back positive), and another brain and spine MRI (no change from the one done privately) they diagnosed me with CIS and gave me high dose steroids for four days after which everything got better except for the headache for which I got some naproxen for and it eventually just went away and was discharged. I got booked in for a follow up appointment in 1.5 months with my consultant neuro (NHS) and was waiting for my treatment to get booked in and was put in the waiting list which I was told would start somewhere in August based on the backlog. But I was told I should go back to normal eventually like nothing ever happened with the occasional numbness that would just pass.
In the 1.5 months to my appointment, my fatigue and fog were acting up and consistently getting worse week after week and on April 6th my entire left leg went numb and I was now limping and it was spreading to my left rib cage and left and right hand - this lasted for about 36 hours before I went to A&E where they ordered another MRI and discharged me to go home.
I saw my consultant neuro (NHS) on April 17 as planned and he classified the numbness as a relapse and changed my diagnosis to RRMS and decided to also recommend that I be listed as eligible for b-cell depletors - Ocrevus, Kesimpta, etc. He said I should get back to normal and that fatigue and fog in the first couple of months is normal and 70% of people get better in 6 months. He recommended pacing myself and to continue with coffee since it was working for me at the time.
A couple of weeks later May 22, I decided to get a second opinion as I was steadily getting worse with fatigue and weakness and limping and went through to a private neuro who specialises in MS at St John’s and St Elizabeth in London. He prescribed me oral high dose steroids for 5 days with a 6 week taper. I had to be pushed around the hospital in a wheelchair as I was too weak to move on my own and I had had a couple of falls the days prior due to weak legs. He also gave me a referral to a neuro physio (private). As luck would have it he was very good friends with my NHS neuro and actually met with him the next day to tell him about my case and what he ordered. My NHS neuro then reached out to me and said that I might be having another relapse and to stay the course on the steroids but he ordered another scan of my spine and head and this time they would go lower in my spine to see if there was something they missed. He said that if there’s evidence of progressing inflammation on the scans, we would then consider Tysabri and Lemtrada as treatment options but otherwise stick to the Ocrevus, Kesimpta. The second opinion neuro agrees with this course of action and handed me over to my NHS neuro but I can bounce between the two if I want and I can reach out to him if I’m concerned at all.
Now I feel better on steroids but I’ve been reading up on PIRA and smouldering MS and SPMS and I’m afraid that even when I start my DMT, I will get worse. My reasoning is, my neuro said I’d be fine when I was discharged in April, but I’ve had like 2 other relapses since then and steadily getting worse. So what’s to say that I won’t be part of the small group of people who show no evidence of disease progression on their scans but are worsening in terms of disability and mobility. That seems to be what’s going on with me now. My scans haven’t changed one bit but my fatigue and weakness is getting more severe. On really bad days I can’t even move my mouse or write with a pen. My neuro said that it’s too early to consider SPMS and said that my weakness and falls and numbness etc are caused by diffuse inflammation as opposed to new lesions and that my fatigue and fog can be attributed to brain connectivity issues rather than direct inflammation. He says that I should get better once I start my DMT and it kicks in but at this point I’m just scared that it may not given what I’ve been experiencing. He was right because my other symptoms got better except for this weakness and fatigue and numbness and fog.
I don’t know how many people got here but if you have and have any words of advise as I’m seriously going crazy here.
Also, now that I’ve written this, I’m just now noticing how much this has been. I’ve done and gone to all these appointments while still working (with the exception of the days I was admitted), pulling long hours and actually leading some major projects at work. How I did it, I have no idea but somehow I did.
TL;DR, I've dropped the 😬😱😱, I got the whatever attitude....I own responsibility for the unmedicaded times, per the evidence i have......and let what may come....happen, &, 🎶🎵I'll cry about it later, cry bout it later,"🎶🎵🧠💉💣🤷💩🤷🙂
It understandable to feel scared of the future especially given your experience. You have been through a lot and that’s amazing that you have still worked through it all. It took me around 10 years from the onset of symptoms to finally get an MRI of my brain which my doctor ordered after the left side of my body went numb and months of cognitive issues, brain fog and fatigue. It took 6 more months to get diagnosed and in that time had another relapse and more lesions. I stared Kesimpta which took about 6 months to really take affect. Some of my symptoms have improved and some flare up when I over do it or it’s hot or I get too stressed. It’s my understanding of MS and DMTs that when the damage is done, it’s done and the DMTs are meant to stabalize and prevent further progression. I’ve adapated to my life as it is now and the symptoms I experience and thankfully am stable on Kesimpta. I don’t know if my response is helpful but I do wish you the best and hope you have as much improvement as possible.