Last reply 7 months ago
Newbie Here But Not New To MS 😮

Hello Everyone!👋,

My name is Audrey, and through the years I’ve been on a few social support sites. I haven’t posted about my MS or been on a support site in many many years, though.

I’ve been officially diagnosed with MS since Nov., 2009 (bout of O.N.). My mother was diagnosed just two years ago, as well. My children 👧🏻👦🏻 are now seeking medical 🏥 counsel as they are having “weird🙃” symptoms and memory problems. For my mother and I, symptoms that could have been related to MS were evident for over 15 years prior to an official diagnosis.
I suppose the “kind” of MS I have is RRMS, but I really think every “kind” simply sucks 🤷‍♀️🤬!!!!

For a few years, I was completely bedridden🛌, I felt my mind slipping away🤯, I couldn’t express myself to my doctors (or anyone) as I really needed to express myself 🤐– in order to receive proper treatment and care for quality of life — annnnnnnd the pain I felt was, at times, completely unbearable😭.

Even though the past few years have been pretty good (walking is better although assistance is sometimes still required🚶‍♀️, cognitive functioning is improved although sometimes falters👌, etc…), pain is there but is “sort of” managed😥, I’ve recently felt that I’m heading into another downward spiral🌪️…

Walking is extremely painful💥, sitting and lying down moderately 🔪 so. Cognitive functioning is worsening🌫. Fatigue is worse than ever😪😴💤😪😴.

About a year ago, my pain management doctor had me discontinue the daily maintenance dose of steroids I was on, proclaiming that he would closely monitor me to ensure cognitive functioning was still fine and pain was controlled without them. Both are not as good as they were on the steroids and are, in fact, getting worse. 🤦‍♀️

I’ve been due to get nerve ablations done again in my neck and lumbar spine, but for over three months now, the previous ablations had shown regenerated nerves and thus an increase in pain🤔. While that explains the increase in pain, it doesn’t explain the decline in cognitive functioning (memory, word articulation, recall) and lassitude (exhaustive fatigue). 🤨 The steroids helped that.

Even so, I have to find something else that works, because even though the steroids helped my quality of life, they were also hurting my body even more (which would eventually make things worse). I have a good pain doctor that works to help me manage all the pain. I have a great neuro-psychiatrist, neurologist, ophthalmologist, and internal medicine doctor who are trying to help with everything else. 😊👩🏼‍⚕️👨🏼‍⚕️

In a few weeks, I am scheduled to see a secondary Neurologist 👨🏽‍⚕️ who can prescribe some form of marijuana 🌿 that my Neurologist who can’t prescribe it is hoping will help me. I’m hopeful and worried 😑 about this, but I think I have tried nearly everything else💉💊🧪 (that insurance covers and which I can afford).

I thought I’d let you all know a little about my MS and what’s going on with me lately. I’ve read through some of your posts 📖 and have found that everyone is super supportive 🤝🤝🏼🤝🏻here (which is exactly what I need and hope to provide for others)!

Thanks for reading my novelette📓. Take care, do what you can, and love! See ya soon.

Much Love💕,

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7 months ago

Hello @audrey_bell, welcome to Shift! Wow, that was quite a long intro! And your use of emojis is unrivalled as far as a can remember! How old are your children? It’s good that you’re being referredin to a new neurologist, it’s always great to be exposed to a wider expertise, so hopefully you’ll get some good suggestions. We are so fortunate in the U.K., as we don’t have to pay for any of our treatments, which takes a lot of the burden away. Did you check out the map function to see if there is anyone else in your vicinity? It sounds like you climbed a mountain to recover to the stage you’re at, so that’s inspiring. I hope you enjoy using this forum and connecting with others that you can relate to. All the best x

7 months ago

Hi @audrey_bell and welcome.

We’re a philosophical bunch here. We try and advocate appreciating the good things in life. 😉

7 months ago

Frankly I dont read a lot of threads fully. Mind you my English is not so great..
I hope you feel better soon specially with the pain. I was daignosed in 2005 noticed negative change about my personality
Im not aware of the thungs i should’ve be aware of several years ago basically dont feel like my age zMS problems vary

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