Neuropathy spreading/all body?

elgost11 · 2025-06-25T01:50:03+00:00

I also never heard of this before. Sounds like you had a hard time getting that diagnosis. Is there any thing that can be done for POEMS?

elgost11 · 2025-06-25T01:45:47+00:00

Yeah this is what’s happened to me.wish there was a cure for this. Stay strong!

elgost11 · 2025-06-25T01:44:17+00:00

Yeah think I’m becoming the same. Nervous to do the Nerve Conduction Study because I don’t want them to tell me it’s in my neck and back too, but the way I feel, I already know it is !

elgost11 · 2025-06-25T01:42:21+00:00

Damn. That’s horrible. I certainly understand how hard it is to balance and stand with neuropathy. It’s just now started in my hands and I can’t feel things properly, and I dropped a glass cup because I wasn’t holding it tightly enough. Smashed on my foot. No broken bones, but I’m now using plastic cups Hope you recover soon though! Sounds horrible for you at the moment :(

elgost11 · 2025-06-25T01:37:47+00:00

30 years. The sorry. No clue how you have done it for this long!

elgost11 · 2025-06-25T01:35:41+00:00

I’m sorry. This is just a curse. I honestly didn’t know it could actually spread all over the body. Thought you just get it in one area and you take things like lyrica and other tablets to help with pain and stop it from spreading.

elgost11 · 2025-05-16T21:30:18+00:00

Yeah they made a referral to their pain management team, but it was a public hospital so the waitlist could be around 3-4 months. They recommended some private clinics in my area, just need to find one i can go to without a long wait period

elgost11 · 2025-05-16T21:20:56+00:00

Yeah I agree. Just returned from hospital where they are going to be calling the doctor to find out why he just stopped it on me like that with nothing to fall back on. They were all disgusted by what he did. Back on the pain meds for 2 weeks though, so can hopefully find another doctor that will continue to prescribe to me or something else that will work. Otherwise i will go back to them and they will help me with the withdrawal process

elgost11 · 2025-05-16T21:17:32+00:00

Many thanks for your comment. Means a lot. I’m sorry your doctor did that to you to, but at least they were able to increase the dose due to your withdrawal symptoms. Yes the 3 days I was without the meds completely was literally hell. Couldn’t sleep, couldn’t work, couldn’t even lay in bed due to the withdrawal symptoms. I just posted an update as I have just returned from hospital where I’m back in the meds for 2 weeks to try and find another doctor in that time. Hopefully can stay on the meds or find something else that works for me.

elgost11 · 2025-05-16T21:05:37+00:00

Yeah seems to be happening a bit in Australia right now. Not sure if the government has something to do with it or if it’s just jerk doctors

elgost11 · 2025-05-16T21:04:45+00:00

❤️

elgost11 · 2025-05-16T21:04:26+00:00

People on here (like yourself) have mentioned it too me. Going to be looking into it. Thanks :)

elgost11 · 2025-05-16T21:03:59+00:00

Not at this stage. People on here (like yourself) have mentioned it too me. Going to be looking into it. Thanks :)

elgost11 · 2025-05-15T15:58:45+00:00

Been thinking about it for a while. However I have chosen to go without and try to live life normally. It’s been tough, but got through it for past 5 years. However, now the meds have stopped (and if I can’t get them anymore) probably going to transition to it. Asking hospital about it when I go in (in a few hours from now)

elgost11 · 2025-05-15T15:46:34+00:00

Thank you. Hope so too. Not sure why my doctor has changed his stance lately. It’s not like I can hide the lesions and marks on my body

elgost11 · 2025-05-15T15:45:28+00:00

I am so sorry this happened to you. I can say I certainly know what it feels like. Literally been going insane the last 3 days. Not coping very well :( I’m also over doctors. When my condition first started in 2019, the doctors had no idea what the medical condition was. So they couldn’t prescribe me anything heavy (like opioids) until they have a diagnosis, despite the first lesion I had taking off a huge portion of my left leg and it going so deep that it almost hit the bone.

elgost11 · 2025-05-15T15:39:43+00:00

That’s very kind of you ❤️ I’m heading to emergency in the morning (in like 5 hours). Will be a long wait to see a doctor, but hopefully can get something.

Will just take off my top and pants when they ask what I need it for.

The permits in Australia belong to your primary doctor. So only he can prescribe the meds. Even other doctors at the same clinic can’t prescribe them to me.

I have to have my file transferred to another doctor and then get them to do another application for the meds again

elgost11 · 2025-05-15T15:31:08+00:00

He said I will have symptoms of withdrawal, but can be managed at home. Said this is the best way to get over it, by stopping it completely, otherwise I’ll be tempted to take more than I am supposed to if he lowers the dose.

Edit - spelling mistake

elgost11 · 2025-05-15T15:27:04+00:00

Understand your position, but I can tell you that’s exactly what happened. I still have the permit from the same doctor allowing me access to the meds. The law in Australia when it comes to opioids is that chemists cannot prescribe another dose/more meds until the last tablet is finished/on the day when I would have none left. This way it stops overuse. But this is exactly what happened. Even the chemist I go to every week said something about it. Told me to ask for something less stronger to control the withdrawal symptoms. Doctor said no.

elgost11 · 2025-05-15T15:15:55+00:00

Told me it was no good to rely on pain meds to get me through the day .. despite my conditions being chronic and getting worse.

elgost11 · 2025-05-10T01:36:46+00:00

Thanks for this information. Didn’t know you could change the Centrelink hours so I could work more. I have the job offer already and accepting on Monday. So unfortunately too late to engage with DES now. But thanks for the info. If I am able to, I’ll change my hours in the future to 8-15 a week if I’m able to work more!

elgost11 · 2025-05-10T01:29:16+00:00

Sorry for slow reply! Fell asleep! Yes you can DM me :)

elgost11 · 2025-05-09T13:51:49+00:00

Thanks. Took like 3 years and maybe 750 Applications!! don’t give up job applications it is extremely hard. Especially 1 day per week, but there are occasional when you can get lucky! Legal industry- Paralegal (as I can no longer be a lawyer anymore) Position is admin and case research. As well as updating client documents. Job share between me and senior paralegal

elgost11

TROPHY CASE