Limbo land rant incoming... Please help!?
Hi there, *update in comments* .... This is a bit of a long rambly first post so thankyou for taking time to read it 🙃 I'm in need any advice relating to what to ask/say in my first neurology appointment today. I am scared/relieved to have found this network as I go through the process of finding out if both my long term health issues (currently diagnosed with fibromyalgia) and recent developments I've had going on (namely double vision/jerky swimmy vision, and random numbness in my arm) is in fact down to MS. Since last December I've got as far as having tests in opthalmology in Jan, & an MRI on my head 2 weeks ago. Unfortunately due to a pretty crappy decision from the opthalmologist I saw, who upon his viewing of my MRI scan, took it upon himself to ring me out of the blue last week to ask me if I had an appointment with neurology booked in (he could have checked the hospital system and seen that yes, I was booked in) because it was of the upmost importance that I be seen ASAP due to there being evidence of early stages of MS. Here is some context before I continue. At the point of receiving this call I am a 36 year old Mother, I am Autistic, and I am at home alone with our 9 year old Autistic Son as we home educate. I had (for the sake of my sanity) forced myself for the last few weeks to avoid googling stuff about MS because I didn't want to fall down a rabbit hole of "worst case scenarios". But I had at least skimmed the symptoms of the rrms type and recognised enough of them in myself to prepare to hear what the neuro had to say at my post scan appointment. Given that my main new symptom was vision related and had been very much a visible symptom to everyone around me as I had to patch one eye for sometime. It was impossible not to at least make our son aware of what may be the cause of things. So he was told by myself and my husband that it may be this illness called MS. To him I don't think it really registered much more than the knowledge that I had Fibromyalgia, as throughout his 9 years of being here I have been in and out of hospital and Dr appointments and gone through various "flares" and periods of remission. I guess this time though has been different because my vision is a pretty pivotol thing to go skewiff. Anyway back to the point... I got this phone call and basically wasn't given a chance to ask anything, I just sort of froze and broke down into tears. I had a week to wait to see neurology and a lot of questions. Our son came and found me in the kitchen and I just blurted it out. So I was then dealing with how I felt plus his reaction to the news and his zero filter questions about whether I was going to die. I dealt with it for a couple of hours then had my husband come home early and take us out the house. He did well in reassuring myself and our son that it would all be OK. We called neurology but they weren't able to offer any further information for me, just said wait till your appointment. And apologised about the call. We lodged a complaint about the call from the opthalmologist. And had profuse apologies offered to us and a phone call from the on call neuro two days later to "help put my mind at ease". He essentially told me that I am not diagnosed with MS yet... That the scan showed various "splodges" (his words) that may indicate MS. Again he said my appointment would go over it all properly and that he was sorry I had "found out" in the way that I had. Compared it to the panic a non cardiology Dr calling up a patient after tests and telling them they have had a heart attack out of panic that it needs to be treated ASAP...instead of looking on a patients record first. Which I understand the panic but for goodness sake there are procedures for how you manage a patient surely?! Anyway I asked about what the next steps would be, would they include a lumbar puncture (I have had one of these back in 2017 when I was hospitalised with Epstein Barr and they suspected Meningitis so I unfortunately know what to expect there) He said yes it was likely going to be necessary as they need to have found "multiple locations of lesions within the spinal cord/brain" to confirm MS. So this brings me up to today I see the neurologist I've been booked into see at 3pm, in the hope that I will have things explained to me fully. Now my willpower to not research prior to this, ran out last night and I was up till 3am reading online. I did at least avoid the scaremongering areas of Google search results and instead went through Shifts list of resources and the posts of others lived experiences of MS. I'm glad I found this place and I feel a lot better informed about what may or may not happen going forward. But there is one very large worry I have had the whole time, and is now compounded by the stories of others (especially womens) journey to diagnosis and treatment here in the UK. And that is the fear that I will be called a hypochondriac, that it's all in my head, that it's "just fibro" that it's "just sensory issues stemming from being autistic" that I won't require any "immediate investigations as there isn't enough evidence to confirm anything yet so I'll just be monitored for a while" The reason behind those fears is that I have gone through my life as a woman, being ignored by medical professionals when I have come to them with concerns. I have had to fight for every single diagnosis I now have, and I am angry that so much time was wasted on a lot of them. And that my own intuition was right but ignored. To date I have faught years for diagnosis of the following: Pcos - was told for years that I didn't have it, because my cycle was regular and that I could get pregnant... that my miscarriages were just one of those things, that I'd had a healthy baby, that my health issues were unrelated to my cycle - my son was 5 by the time I was listened to. And I was right. Fibro - this one sparked off the back of a (second instance) of Glandular fever in 2017. I Pushed for rheumatology referral, eventually got diagnosed in 2019 as my medical history and maternal line having had it all correlated. Adhd - took me 5 years from first mention of this to a gp... To actually be seen through fighting for patients right to choose. The physiatrist said that I had been missed due to my gender, and that years of antidepressants wouldn't have touched the sides in helping me lead a stable life. As I was dopamine deficient not seratonin. Autism - this took 4 years from first mention, and once I was assessed the specialist in charge, again mentioned my gender being the largest factor in why I wasn't aware of it sooner... Learning to mask as a young girl born in the 80s has left me open to having people completely disregard my need for help. And totally fail to understand the sensory issues that have been at the root of so many problems in my life. The only two things throughout my life that GP's and then any further specialists have ever acted upon fast (and in my opinion way too hastily) Firstly the mood disorders. Depression and Anxiety - having antidepressants thrown at me from age 13. (when looking back I had clear signs of adhd & autistic burnout) this continued for years with gps prescribing them well into my 30s. I am now off them by choice. Secondly - Painful periods... I was put on the pill at 13 and only came off them at 27 to start a family. After I came off I had two back to back miscarriages, and then my son. After he was born they pushed me to go back on the pill but I refused and it was only then that the unravelling of the sticking plasters of synthetic contraceptives began. I learned about cycle health and holistic approaches to help and realised very soon that my suspicions about pcos prior to having our son, were worth pursuing. As well as PMDD which is another reason GP's kept saying to go on the pill & an ssri to "fix" the cyclical mood drop. Now I'm sat here having written all of this out and I'm scared that I am facing yet another set of health related circumstances in which I am going to be told that I'm wrong, or that my own research isn't relevant, or that "anecdotal" "lived experience" isn't as valid as clinical research, studies and diagnostic pathways. Whilst I understand the need for such pathways... I also am all to aware that sometimes (ALOT of the time) those pathways are outdated and restrictive. I stumbled accross a post on here last night from a neurologist who is advocating for there to be recognition of the fact that relapses and progression of disability doesn't always show on MRI scans. That there is need for it to be seen from not jsut a radiology perspective but also a biological one. That he is seeing cases where patients are told it's not a relapse, or not MS related, that it's just stress or whatever... All because a radiological viewpoint cannot see the deeper much biological lesions within the brain and spinal cord. But these people are suffering and not being heard, and this makes me weep. This is what scares me the most... Not the diagnosis or the implications of it, or where I might be headed towards in terms of my disability levels... What scares me is not being heard, not being taken seriously, and consequently a massive amount of time being wasted that could be incredibly important in giving me the best chances of leading a happy stable life with any MS symptoms being treated, managed & supported. I am angry that we even have to keep on bringing up the issues with how women are dismissed so often when it comes to everything in life but health is the biggest trigger for me. I have watched my 71 year old mother suffering with various health problems my whole life, and I've seen what happens long term as a direct consequence of being ignored by professionals. Equally how she has shut down unable to advocate for herself and denies any need for help as a direct response to being ignored so many times previously. It's quite frankly horrendous. I am absolutely not willing to follow that same path. I will not be fobbed off, I will not be told to take this pill for that symptom and this one to combat the side effects of the other, with absolutely no regard to putting all the symptoms together and seeing if they are all stemming from one thing! I will not be told to "just try to avoid stress" or "just get more exercise" or any other myriad of unhelpful "advice" she and myself have been given over the years. I even asked her when I was first wondering if what I have is MS, whether she had ever had it mentioned by Dr's as I noticed she has a lot of the symptoms. Her response floored me "No, I have had my suspicions myself but I couldn't face talking to anyone about them, I had *too many* other things to worry about" My beautiful, talented, clever Mother has been reduced to a walking bag of medication, covered in metaphorical sticking plasters holding her together. Who largely resembles an ostrich burying her head in the sand all because of the fear and overwhelm at facing another diagnosis, another set of pills, another set of side effects. It's honestly heartbreaking. I am incredibly thankful that I have my husband to advocate for me... As he so rightly says to me "We will be the squeaky cog in the machine until you are heard!" It's just bloody depressing how much energy is needed when you're fighting a largely invisible illness as it is, to then have to face the possibility of fighting for the right to access informed specialists, treatments & supports. If anyone has managed to get this far reading... Thank you... And if anyone has any suggestions for things I absolutely must ask in my appointment with neurology today or going forward please do say... I am hoping that if I go in there with a strong set of relevant questions I will get listened too more seriously. Because honestly... Reading and watching some of the descriptions of living with undiagnosed or early MS... It's like seeing myself. Thank you E
The one thing I regret not asking, or maybe rather didn’t follow up on, was the mental part. I just went into denial and treated it as some minor inconvenience the days I had to get infusions. Now several years later it really has come back to haunt me. But I had been in so much therapy because of other stuff and I was so afraid of falling down into that black hole again that I treated it as physical diagnose only. So if I could do it all over I would ask for and accepting help for the mental part. Hope all goes well Ellie!
Hi, I have found charities very helpful. On YouTube there are some MS Society videos with puppets to explain MS to children. I used these after diagnosis for my sons (one of my sons maybe on the spectrum). When you go for your appointment I would recommend putting all the symptoms you have experienced on paper, tablet or phone etc. This way you can explain everything in a clear and concise manner to the consultant (who has about 5-10mins per patient). Good luck with your appointment.