Author Topic: Neuropathy  (Read 15021 times)

Lesley

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  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Neuropathy
« on: January 21, 2015, 09:53:34 pm »
How do you all cope with neuropathy? My legs from just above the ankle get what I call White Heat. My legs go 'wooden' too - I joke it's rigor Mortis setting in. They are like two sticks of wood sometimes. Just no give!
I'm just over a year post sct so I'm guessing this is as good as it gets!

patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
Re: Neuropathy
« Reply #1 on: January 22, 2015, 09:33:21 am »
Hi Lesley,

So pleased to see you here on the forum. Whilst you and I both have AL, we are affected very differently and both of us have our daily struggles. I am sure many can identify with us.  On the positive side the illness means we have become good friends and mutually supportive.  :) I really hope this forum will provide similar support and friendship for many others from the Amyloidosis community.

 It would also be really good to have some posts from family members, friends or carers of sufferers too.

As for neuropathy, there are various drugs that are used. I have had a form of neuropathy for 13 years and have been variously prescribed Gabapentin, Pregabalin and Duloxetine. All used in epilepsy too I believe. None have really helped my relentless and distressing oral symptoms the result of nerves damaged by amyloid. I take a low dose of Pregabalin which is better than nothing. Higher doses further aggravate damaged nerves! I am desperate for symptom control. I do know that some of the drugs above help a lot of sufferers with neuropathy. I hope others will post suggestions that have helped them.  Definitely ask your Dr.
Pat

Lesley

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  • Diagnosed: December 2012
Re: Neuropathy
« Reply #2 on: January 22, 2015, 10:57:44 am »
Hi Pat

Yes my lovely, it would be good to hear from patients and carers alike. I do believe the job of caring can almost be as hard for the Amy sufferer - to see a loved one suffer and not be able to do anything to help.

I have got Tramadol for the Neuropathy - but last time I took that it didn't help much. They make me quite drowsy too so I couldn't take them during the day. I haven't heard of the other tablets at all.

Its strange as I describe it as 'White heat' whereas others describe it as pins and needles. It reminds me of when you have been outside and got really cold hands and even tepid water feels like boiling water - that's the sensation I get!

Love & hugs Pat
xx

patpinchin

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Re: Neuropathy
« Reply #3 on: January 25, 2015, 06:47:40 pm »
Hi Lesley,

Neuropathy can present is various ways so Drs have told me Lesley, but its source is always the same.....damaged nerves. Amyloid loves to infiltrate nerves. I have not heard of Tramadol being used in the treatment of neuropathy but that doesn't mean to say that it isn't and doesn't help some people with the condition. It is certainly classed as a strong painkiller. If it makes you sleepy and doesn't help your neuropathy ( definitely diagnosed?) then maybe you should discuss it with your Dr. Gabapentin which I have tried certainly made me sleepy. It has that reputation.  Pregabalin after the first few doses doesn't have that effect, although my dosage is low, as a higher one aggravates my damaged palate nerves. I have recently been seeing a new Chronic Pain Consultant and he has advised me that clinical evidence shows that a combination of Pregabalin and Duloxetine are known to be very effective in relieving neuropathic conditions. He said that it is vital to get the dosage right so that means experimenting with a specialist's help until you do. My Consultant told me that it is usually only a specialist in chronic pain who can really help you with this. Could you ask your GP to refer you? Unfortunately I found that going through the Nhs referral system took 9 months! That might just be Dorset! So I see my Consultant privately which means I can see him very regularly so get the very close monitoring and personal advice I need. So far, this has been the best help with my chronic nerve damage in 13 years. So a step forward. Not a miracle but more help than I have found hitherto. Hoping for more progress.  Big hugs back to you.XX
Pat

georgeturner

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  • Diagnosed: 13 May 2014
Re: Neuropathy
« Reply #4 on: February 10, 2015, 10:12:43 am »
Hi Lesley,

I have peripheral neuropathy which affects my hands and lower legs. Your description of how your legs feel matches my own feelings. Also my feet and hands get very cold and I can't tell if the water is hot or cold on my legs when showering. I also suffer from leg cramps and usually wake up with tingling hands.

At the moment, this is not causing too much discomfort, but I may need to undergo carpal tunnel release if the pain increases.

I had carpal tunnel release operations in 2004 and 2006 which were very successful though I was left with a slight loss of feeling in my right fingertips.
I was only diagnosed with amyloidosis in 2014 and told carpal tunnel problems are very common in amyloidosis patients.
I also had a successful operation for lumber stenosis in 2007 because of pains shooting down my legs, and was diagnosed with late onset, exercise induced asthma in 2009.
 
Were these also due to amyloidosis?
Slainte Mhath,
George

Lesley

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Re: Neuropathy
« Reply #5 on: February 10, 2015, 05:09:37 pm »
That's interesting George - when you look back over the last few years, and you question the aches and pains that, well I did anyway, I put down to 'getting older'. I did ask Professor Yin how long he thought I had had Amyloid for before diagnosis and he seemed to hint it would have been a good year or two and judging by the amount I have in my kidneys I guess he could be right.  I know for a split second sometimes say when I was making the bed, I would really catch my breath, but as soon as I did,  it passed, however, I now know with my cholesterol level reaching 20.7 that it was putting pressure on my heart.

The neuropathy is such a weird feeling but the thing that hurts me the most is kneeling down - if I'm on my own I actually allow the 'ouch' to come out (it helps!). I really feel like a 'Wooden Top' - remember them from many years ago?  Sometimes I experience shooting pains. I have a pain in my left arm that feels like someone is cutting it off with a blunt knife (though I'm sure a sharp one would hurt too!). But is it all  Amy. Non Amy sufferers like to tell me that they too suffer aches and pains on getting old! Irritates me a bit that one!

Lovely to hear from you  -  whereabouts in England are you?

Lesley

georgeturner

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Re: Neuropathy
« Reply #6 on: February 10, 2015, 10:23:20 pm »
Hi Lesley,

I'm from Glasgow, Scotland and thankfully we still have access to the NAC.

I have hereditary Amyloidosis, so I guess all these symptoms could have happened anytime over the last 65 years. Typically they occur in the late 50's onwards. I was only diagnosed in 2014 and there is currently some debate about whether or not I have asthma.

I can sympathize with you about kneeling down or rather getting back up. That's the real problem for me. Up until diagnosis, I was pretty active, badminton three times a week and hill walking most weekends. I've had to put them on the back burner for now, but with the current clinical trials and research, I still have hopes of returning to a more active life.

Good to hear from you.
Slainte Mhath,
George

Lesley

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  • Diagnosed: December 2012
Re: Neuropathy
« Reply #7 on: February 11, 2015, 01:44:15 pm »
Hi George

Its lovely to be able to 'chat' to people - interesting one (or maybe not!) whatever Amy(loid) it is, are the symptoms still the same? Maybe Miriam could answer that one? I know Amy manifests itself in so many different ways and hurts people in different ways too.

I'm so glad you still have access to the NAC too. What a wonderful hospital and the staff are brilliant too.
I think that's what irks me a bit - I know what my body was like pre diagnosis. I exercised every single day (except sunday), rode a bike, speed walked. I was fit and uber healthy diet too. So I know the symptoms I have now are from Amy. I tried a small walk last Sunday and to feel the wind against my face was exhilarating, albeit a slow walk (with fold up walking stick for just in casers)!

I find I cant get my body weight up - its like I have just no strength to push my body upwards once I'm down! Sometimes the lads go to help me up and I become a dead weight - and I only weigh 9 stone!

Oh Amy, I wish I'd never heard about you, never mind met you!!!

Lesley

georgeturner

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Re: Neuropathy
« Reply #8 on: February 11, 2015, 05:55:18 pm »
As far as I understand, the symptoms vary with the different types of amyloidosis  and even people with the same type can have different symptoms. Some people only have one symptom, other people have several affecting nerves and various organs. It just depends on where the amyloid deposits itself.

My weight dropped to about 9 stone, but its now back up to over 10. That may be due to the clinical trial drug I'm getting but it's too early to know. Hopefully as the trial progresses, the results will show that the amyloid deposits have slowed down or stopped. Maybe even regressed. That would be wonderful.

There are other drugs on trial which may lead to our bodies being able to clear out the amyloid deposits.

So plenty to hope for.
Slainte Mhath,
George

Lesley

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Re: Neuropathy
« Reply #9 on: February 12, 2015, 10:21:23 am »
Hi George

That's interesting re the clinical trial. I have to ask, though there are probably a few trialling; I met a gentleman in July at the NAC and he said he was the first patient to trial the drug. I didn't catch his name - was this you? Professor Hawkins was there at the time and we had to evacuate due to the fire alarm going off?

Lesley

georgeturner

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Re: Neuropathy
« Reply #10 on: February 12, 2015, 11:48:52 am »
Hi Lesley,

No it wasn't me. I think I was one of the last to get on to this trial. But I believe there are several trials going on at the moment. It would be great to hear from some of the others taking part in the various trials.

I'm taking part in the Alnylam Trial for ATTR Cardiac Amylodosis. I've posted their initial results for phase 2 below. The final phase 2 results should be out soon.

http://www.alnylam.com/capella/presentations/positive-initial-revusiran-phase-2-data/
Slainte Mhath,
George

ziad_okeil

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  • Diagnosed: 03/2013
Re: Neuropathy
« Reply #11 on: February 12, 2015, 04:49:21 pm »
Hi Lesley,

I, too, have been struggling with NP even before the diagnosis. I had Carpal Tunnel Syndrome (CTS) and was operated in one hand. The other one should also be operated but I am just delaying it. At first (before the diagnosis) they thought it was Acromegaly since CPS is one of the symptoms but then after being diagnosed with AL AMY, it was clear that the NP is related to it.

I have tingling in my toes and fingers. I can't say I have pain in my hands but sometimes during the night I feel some pain in my yet-to-be-operated hand.
I have tried Gabapentin and it has helped a lot.

May be you should give it a try

Regards,
Ziad

Lesley

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Re: Neuropathy
« Reply #12 on: February 12, 2015, 05:01:09 pm »
Hello Ziad - pleased to 'meet' you - you are good friends with the lovely Pat?

Yes I think Pat mentioned the Gabapentin. I don't suffer it in my hands but it does get worse as the day goes on and I experience shooting pains in my feet too - I blame everything on Amy though!

If I can cope with Amy (!) I cant cope with the incidentals that happen like a cough / cold / lack of sleep / or just the added extra pain that we get so I sympathise with the pain in your hands Ziad.

Lesley

georgeturner

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Re: Neuropathy
« Reply #13 on: February 12, 2015, 11:55:13 pm »
Hello Ziad,

Don't delay the carpal tunnel operation too long. I had to wait a while in the queue for the operation on my right hand while they tried physio. Although the operation was successful, I never fully got the feeling back in the fingertips.
Slainte Mhath,
George

ziad_okeil

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  • Reason for joining: AL Amyloidosis - skin/Soft tissue involvement
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Re: Neuropathy
« Reply #14 on: February 13, 2015, 08:00:15 am »
Lesley,
Pleased to meet you too... and yes! I am proud to say that I am friends with the lovely Pat.... 😃

Coping with AMY is never an easy task but we don't have a choice :(

Wish you all the best

Regards,
« Last Edit: February 13, 2015, 08:02:44 am by ziad_okeil »
Ziad