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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

No idea what to do

19 replies

MyFuturePlans · 02/04/2025 19:16

I have a neurological condition and it is getting worse, the nerves in my legs are declining

My consultant is going to withdraw my current medication as it isn't working and has asked me to decide between no treatment and see how things go. Or to try a stronger treatment that might help or might not help but comes with possible serious side effects.

I am already in a wheelchair but I can stand and do a few steps with crutches. I still have use of my arms, just drop things on occasion.

My husband thinks I should try the treatment

I am unsure, I am on so much medication already, I am worried that stronger medication could make things worse, or would I regret not trying it.

Wish I could see 6 months into the future and see what is the right thing to do.

OP posts:
Maitri108 · 02/04/2025 19:18

I would join a forum for your specific condition and ask for advice. There will be people who have gone through the same thing.

Original poster
MyFuturePlans · 02/04/2025 19:21

Maitri108 · 02/04/2025 19:18

I would join a forum for your specific condition and ask for advice. There will be people who have gone through the same thing.

My condition is so rare, that there are no support groups.

Which is why my consultant said it was up to me, as he has no idea which option would be best. Otherwise I would do what he suggested

OP posts:
justkeepswimingswiming · 02/04/2025 19:24

Nobody can tell you what to do.
Personally I’d sit and weigh up the pros & cons. Could the new meds potentially speed up the decline in your health? Will not having any meds cause a decline?

MagnoliatheMagnificent · 02/04/2025 19:25

Get as much info as you can. Details on the side effects and how likely they are to happen. If they do,
can they be treated. What would the doctors be hoping to achieve by giving you the new medicine, and what happens if you don’t have it? Any alternatives?
Are the side effects you know of life threatening?

Ihad2Strokes · 02/04/2025 19:28

MyFuturePlans · 02/04/2025 19:21

My condition is so rare, that there are no support groups.

Which is why my consultant said it was up to me, as he has no idea which option would be best. Otherwise I would do what he suggested

Edited
Show quote history

I'm really really sorry to hear that xx

As my name indicate I had two strokes (earlier this year) and have nerve pain in my hand, arm torso and leg on one side). It hadn't actually occurred to me it could get worse, but maybe it won't as mine was because of a stroke and not what you have

I was on amitriptyline, which didn't really seem like it was doing much and as I'm no good with medication, it was the one drug she was happy to drop (unfortunately not the other billion. I'm on.🙄)

For now, I'm just seeing how it goes without for a bit longer then may try the amitriptyline again or one of pregabalin, gabapentin, or a new one I can't remember the name of Just now.

what is the downside of not doing the treatment and just seeing how it goes? Couldn't you then try the treatment if things become unbearable?

Original poster
MyFuturePlans · 02/04/2025 19:41

There isn't any known facts.

If I do nothing. I might continue to get worse or I might stop getting worse
If I try the new treatment. I might continue to get worse or I might stop getting worse

The side effects could be nothing, up to hospitalisation due to severe infection which might kill me. Consultant said I am a low risk for a severe infection but it could happen.

The medication may permanently make me immune suppressed even if I stop the medication.

OP posts:
Maitri108 · 02/04/2025 19:44

Don't take the medication. See how you cope without it.

Original poster
MyFuturePlans · 02/04/2025 19:48

Maitri108 · 02/04/2025 19:44

Don't take the medication. See how you cope without it.

I am leaning this way but worrying about further nerve damage. Think I need to sleep on it and see how things look tomorrow

OP posts:
Fleurty · 02/04/2025 20:12

As someone who has had to make similar decisions with lower stakes I would have 2 questions

  1. If you take the new medication and get side effects would they be permanent or would they stop if you stopped the drug?
  2. If you tried no medication and your symptoms progressed would the new medication be able to reverse those symptoms or would they become your new normal?
Original poster
MyFuturePlans · 02/04/2025 20:30

Fleurty · 02/04/2025 20:12

As someone who has had to make similar decisions with lower stakes I would have 2 questions

  1. If you take the new medication and get side effects would they be permanent or would they stop if you stopped the drug?
  2. If you tried no medication and your symptoms progressed would the new medication be able to reverse those symptoms or would they become your new normal?
  1. It is a infusion treatment which will have a 9 month effect and therefore I couldn't stop the side effects midcycle but yes I could decide not to have a further cycle. Main side effects are infection based so I would get treatment, depends how bad it got and we have no idea until or if it happened. It might never happen.
  2. Any progression of symptoms would be permanent, as we are talking dead nerves and it is the main nerve cell body not the coating. It does not grow back
OP posts:
Original poster
MyFuturePlans · 02/04/2025 20:32

The other smaller issue is how work would take the extra hospital appointments every year, I would hope they would be supportive

OP posts:
Original poster
MyFuturePlans · 02/04/2025 20:33

I am finding writing options down very helpful. Off to bed now, in too much pain to think and I have work tomorrow

OP posts:
Original poster
MyFuturePlans · 07/04/2025 12:21

I have decided I am trying the new treatment, it must be worth a try!

OP posts:
verycloakanddaggers · 07/04/2025 12:24

I really hope the treatment works for Flowers

Sorry you have these tough choices to make, fingers crossed you get good results.

BobbyBiscuits · 07/04/2025 12:36

Can I ask the name of the treatment? Someone I know has severe nerve damage caused by an accident in their leg. No treatment has worked so far so it would be great if this is something that could help. I wish you well x

Original poster
MyFuturePlans · 07/04/2025 16:17

BobbyBiscuits · 07/04/2025 12:36

Can I ask the name of the treatment? Someone I know has severe nerve damage caused by an accident in their leg. No treatment has worked so far so it would be great if this is something that could help. I wish you well x

I can't remember the name of the actual drug but it is a Disease Modifying Treatment (DMT) which will attack certain of my cells B-cells or T-cells, which will stop my body from attacking and killing my nerves. I am not sure of the actual details, it was explained to me but I was upset that my nerves were getting worse to take in everything that i was told at the time.

It won't make me better but if it works, it will hold me at this point of nerve damage and stop the progression of future nerve damage.

It won't stop my daily pain and nerve pain is tricky to treat, but that is an issue for another thread.

@BobbyBiscuits Is your friends nerve damage is progressing or stable? DMT is aim to prevent further damage. Or are you looking for a good nerve pain relief treatment? I am on a combination of pregablin, zapain and duxoline and I still can't sleep because of my pain levels. I need something better myself.
I hope your friend gets help, nerve pain is so hard to deal with.

OP posts:
BobbyBiscuits · 07/04/2025 18:43

MyFuturePlans · 07/04/2025 16:17

I can't remember the name of the actual drug but it is a Disease Modifying Treatment (DMT) which will attack certain of my cells B-cells or T-cells, which will stop my body from attacking and killing my nerves. I am not sure of the actual details, it was explained to me but I was upset that my nerves were getting worse to take in everything that i was told at the time.

It won't make me better but if it works, it will hold me at this point of nerve damage and stop the progression of future nerve damage.

It won't stop my daily pain and nerve pain is tricky to treat, but that is an issue for another thread.

@BobbyBiscuits Is your friends nerve damage is progressing or stable? DMT is aim to prevent further damage. Or are you looking for a good nerve pain relief treatment? I am on a combination of pregablin, zapain and duxoline and I still can't sleep because of my pain levels. I need something better myself.
I hope your friend gets help, nerve pain is so hard to deal with.

Show quote history

Thank you very much. I do hope it works for you. I think for my friend it's stable as it's been the same since the accident but they say it won't get better. It might be a totally different situation as yours is to do with your body attacking the nerves? I'll tell them about the medications you mentioned. I know they're already on the highest dose of gabapentin and also morphine.
It's horrible isn't it? Fingers crossed for you x

Original poster
MyFuturePlans · 12/04/2025 10:49

BobbyBiscuits · 07/04/2025 18:43

Thank you very much. I do hope it works for you. I think for my friend it's stable as it's been the same since the accident but they say it won't get better. It might be a totally different situation as yours is to do with your body attacking the nerves? I'll tell them about the medications you mentioned. I know they're already on the highest dose of gabapentin and also morphine.
It's horrible isn't it? Fingers crossed for you x

Show quote history

I moved from gabapentin to pregablin and that helped me a lot, plus the side effects were less. Maybe your friend could ask if this might help them?

OP posts:
BobbyBiscuits · 12/04/2025 10:56

MyFuturePlans · 12/04/2025 10:49

I moved from gabapentin to pregablin and that helped me a lot, plus the side effects were less. Maybe your friend could ask if this might help them?

Show quote history

Thank you. Yeah, they wish they were on pregab as it's less harsh. I was on it and when I took one of their gaba tablets I immediately passed out!
Because the pain relief isn't really enough it's really hard for them to reduce the gaba or switch.

I hope your treatment goes well x

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