this post was submitted on 17 Jul 2023
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Glad you got diagnosed! My neurologist has already told me the expect a non curable situation sadly so I’ve accepted that
Due to the way I reacted to prednisone months back he talked to me today about potential lifelong immunoglobulin IVs that should help me a lot instead of destroying my immune system with steroids
I’m sorry to hear that. As someone who’s been on prednisolone since 2008 without pause, I truly hope IVIg is available for you (it wasn’t suitable for me). I have a whole bunch of rare incurable illnesses, if you need a stranger to talk to feel free to message me. It can be a lonely journey, I’m happy to help if I can.
Thanks I appreciate it. I got a blood test done and it didn’t show any muscle inflammation so now I just set up a spinal tap for next Tuesday. He thinks it’s some polyneuropathy thing but he says I’m the weirdest case he’s ever experienced. Told me my reflexes were different from when I saw him a month ago. It just all makes no sense. My emg on my legs shows my tibial nerve on both legs were messed up and then all my muscles were firing wrong. ¯_(ツ)_/¯ On painkillers (hydro), Lyrica, and muscle relaxers and yet I’m still in pain. Have some control issues with my legs and just a lot of stuff. I’m sorry you’re going through all this. You can also reach out to me, it is quite a lonely journey especially when you’re 25 and no one can relate or understand
I was 21 when I was diagnosed, symptoms started at 18. I was told I’d never be able to work, that I’d never have children, and I’d be lucky to see 30. I went to an irl support group and had to sit through a 55 year old woman sobbing because she needed to take early retirement and she really liked her job. At the time it felt so utterly minuscule compared to the loss I was grieving it just made me angry. I was angry a lot when I was younger. I’m 37 now so I beat the odds and I’ve learnt to live with the unfairness of it - and to accept that people like that 55 year old woman are perfectly entitled to grieve for their loss. Suffering is subjective, and if that’s the worst thing that ever happened to that woman, it’s terrible for her.
RE the pain… MEDICAL CANNABIS. I’m in the UK and it’s only recently been made legal for medical purposes. You can’t get it on the NHS though, I have to pay privately and without a job that’s really hard. But it’s worth the sacrifice - my life has improved dramatically in the year I’ve been taking it. I was on a huge dose of gabapentin (sister drug to lyrica) 600mg at 8am, 12pm, 4pm and 900mg at 8pm. Plus NSAIDs, immune modulating drugs, benzodiazepines, amitriptyline, and 3 different opioids. I’ve reduced those drugs by about a third since I started medical cannabis and my pain is better than I can ever remember.
Hope the lumbar puncture goes well - it’s not as bad as it sounds, promise! The bit of back pain you can get afterward is just like period cramps - a hot water bottle will help 🙂
I live in Colorado in the US and we have legal weed here. I use CBD, CBG, and THC and it helps but I’m no good when I’m baked during the day. I use it ay night. That’s amazing you are still here and beat the odds, keep that going!
I can only imagine how that woman felt going through that. Luckily I went through school for software engineering and I got a remote job. If I wasn’t able to work from home I wouldn’t be able to work. So little can make my pain so bad it’s debilitating.
I’m very glad you’re feeling better than ever, that’s amazing to hear. I hope one day I’m able to say that. Do you get side effects from prednisone? Every medical person has told me that going on it long term has many side effects but sometimes you just have to do it. I really hope the immunoglobulin will be a correct fit for me.
Right now I’m on 100mg Lyrica 3 times daily, celecoxib 200mg, 12 mg tizanidine, have Cyclobenzaprine also, and then 20mg hydro daily. I just started the hydro a week ago. I also take 100mg tramadol xr. I was on 100mg tram xr and 200mg ir throughout the day and it did nothing. The hydro already does so much more but it’s still not enough.
Having this chronic pain has really made me see life from a different perspective. I moved from Seattle washing where I grew up to denver Colorado just last July because I love hiking, snowboarding, and biking. But just soon after I moved it started and slowly progressed and then in January is when it got bad so now I can’t even do the things I moved here for. It really sucks. At least I’m happier here in general.
I’m sorry it took 3 years for you to get diagnosed. I really hope something can be figured out in the next year. It just sucks so bad not being able to be on the medication like prednisone that really helps me because it can affect results of tests. I don’t even know if I care about a diagnoses at this point. I just want to either be on correct pain medication or something that allows me to do stuff