National Amyloidosis Centre Patient Forum

Amyloidosis => General Discussions => Topic started by: Lesley on January 21, 2015, 09:53:34 pm

Title: Neuropathy
Post by: Lesley 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!
Title: Re: Neuropathy
Post by: patpinchin 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.
Title: Re: Neuropathy
Post by: Lesley 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
Title: Re: Neuropathy
Post by: patpinchin 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
Title: Re: Neuropathy
Post by: georgeturner 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?
Title: Re: Neuropathy
Post by: Lesley 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
Title: Re: Neuropathy
Post by: georgeturner 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.
Title: Re: Neuropathy
Post by: Lesley 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
Title: Re: Neuropathy
Post by: georgeturner 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.
Title: Re: Neuropathy
Post by: Lesley 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
Title: Re: Neuropathy
Post by: georgeturner 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/
Title: Re: Neuropathy
Post by: ziad_okeil 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,
Title: Re: Neuropathy
Post by: Lesley 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
Title: Re: Neuropathy
Post by: georgeturner 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.
Title: Re: Neuropathy
Post by: ziad_okeil 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,
Title: Re: Neuropathy
Post by: ziad_okeil on February 13, 2015, 08:10:04 am
Hello George,

Thanks a lot for the advice. I know I should not delay it any longer but I am just psychologically not ready for it 😉

Thank you again

Regards,
Title: Re: Neuropathy
Post by: Lesley on February 13, 2015, 12:41:17 pm
Lovely to have this site and be able to 'chat' to people 'in the know' where Amy is concerned! So many people are so ignorant of it  -  ignorant may be a word that is quite strong but it sums up how I feel constantly battling to relate the story to people when they ask and say 'but you're cured now' - I wish - Grrrr

Lesley
Title: Re: Neuropathy
Post by: Miriam Vered on February 13, 2015, 01:04:20 pm
Quote
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.


Sorry it's taken me a while to answer Lesley's question, but here you go:
Amyloidosis can be associated with a very wide variety of symptoms, depending on which organs are affected by amyloid deposits. As George said a bit earlier in this discussion, people with the same type of amyloidosis may have different affected organs and experience different symptoms. Both AL and ATTR amyloidosis can affect the nerves causing the symptoms of neuropathy which Lesley, George and Ziad all unfortunately experience.



Title: Re: Neuropathy
Post by: patpinchin on February 13, 2015, 01:31:14 pm
I have a form of neuropathy too, diagnosed as "chronic hypersensitivity of the palatal nerves damaged by amyloid infiltration". This was made on the basis of PET imaging.  I do not have pain in my palate but relentlessly ferocious salty taste sensations which are also very sore. Excruciating and incapacitating making conversation unsustainable as it increases the intensity of my distress as does eating and most activities. In 13 years no-one has been able to find me symptom control. Thank-you Lesley and Ziad for your compliments. You are both wonderful friends to me.  :)
Title: Re: Neuropathy
Post by: patpinchin on February 22, 2015, 09:52:33 am
Do you know if this treatment is available here Miriam and if it has been used effectively or otherwise for Amyloidosis patients with peripheral neuropathy?

http://l.facebook.com/l/ZAQGZ6WNh/sharing.mayoclinic.org/discussion/breaking-away-from-the-pain-with-the-help-of-the-scrambler/?linkId=12478675

I note there is also a clinical trial running in the US.

https://clinicaltrials.gov/ct2/show/NCT01347723?term=Loprinzi&rank=2
Title: Re: Neuropathy
Post by: Miriam Vered on February 26, 2015, 08:30:36 am
Sorry Pat, I don't know about this. Just from an internet search it doesn't seem to be available in the UK. I asked Professor Hawkins and he doesn't know anything about it.
Title: Re: Neuropathy
Post by: patpinchin on February 26, 2015, 09:09:36 am
Thanks for enquiring Miriam.  :)
Title: Re: Neuropathy
Post by: Martin on March 20, 2015, 09:44:23 pm
Hi all, my wife Cheryl has AL Amy with all the same symptoms, cold feet and legs, wakes up most nights with calf cramps. Cheryl loves her feet massaged most days, which I do when possible, in fact every time she catches me sitting down I hear her voice ' any chance of a foot rub' bless her. I suppose we have to keep positive and do what we can and help each other cope.
Title: Re: Neuropathy
Post by: Lesley on March 24, 2015, 03:23:44 pm
HI Martin

Great to see you on here. I  hope Cheryl is ok. She has a lovely smile. You do so much for Amyloid in general. Just wanted to say hello.
Lesley