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Old 04-20-2014, 09:51 PM #1
Pinksweetpea Pinksweetpea is offline
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Confused Large Fibre sensory Polyneuropathy

Hi to you all,

This is my first post, although I have been reading your site for months and I am finding it both interesting and helpful. I have just been diagnosed with "Large Fibre Sensory Polyneuropathy" after nerve conduction tests by the Neurologist.

It hasn't been made clear to me if this condition is "progressive" and I would appreciate your feedback on this. It did start in one foot, then the other and at the moment the numbness has gone up to my knees on both legs, but this has happened over many years. My balance is not very good now and I am unsteady on my feet, which is the main problem.

I have read that my condition can start in your hands and at the moment the dexterity of both hands has worsened in recent months, but the strength seems to still be there - confusing? The Neurologist put me on Lyrica but I had to discontinue after a month because of the foggy brain and other side effects. She said it would "slow progression" but I have found no evidence on the internet that Lyrica will do that - again confusing?

I would really appreciate hearing from anyone with the same diagnosis or symptoms. This site is a real blessing believe me and I want to say THANK YOU for all that you do in supporting confused people like me.

Best Wishes, Pinksweetpea
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Old 04-21-2014, 01:03 AM #2
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Wink Nice to meet you!!


Pinksweetpea,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Her is forum that you will find some answers at. There a great number of friends there to help you out.

Peripheral Neuropathy:
http://neurotalk.psychcentral.com/forum20.html

Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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Old 04-21-2014, 08:13 PM #3
Pinksweetpea Pinksweetpea is offline
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Thank you so much Darlene for your warm welcome. I will keep searching on the site you suggested,

Best Wishes, Pinksweetpea xx
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Old 04-28-2014, 05:15 PM #4
david x david x is offline
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Exclamation are you on a statin drug???

Quote:
Originally Posted by Pinksweetpea View Post
Hi to you all,

This is my first post, although I have been reading your site for months and I am finding it both interesting and helpful. I have just been diagnosed with "Large Fibre Sensory Polyneuropathy" after nerve conduction tests by the Neurologist.

It hasn't been made clear to me if this condition is "progressive" and I would appreciate your feedback on this. It did start in one foot, then the other and at the moment the numbness has gone up to my knees on both legs, but this has happened over many years. My balance is not very good now and I am unsteady on my feet, which is the main problem.

I have read that my condition can start in your hands and at the moment the dexterity of both hands has worsened in recent months, but the strength seems to still be there - confusing? The Neurologist put me on Lyrica but I had to discontinue after a month because of the foggy brain and other side effects. She said it would "slow progression" but I have found no evidence on the internet that Lyrica will do that - again confusing?

I would really appreciate hearing from anyone with the same diagnosis or symptoms. This site is a real blessing believe me and I want to say THANK YOU for all that you do in supporting confused people like me.

Best Wishes, Pinksweetpea
Are you on a statin drug?
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Old 05-03-2014, 01:49 AM #5
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Quote:
Originally Posted by david x View Post
Are you on a statin drug?
Yes, I went on statins about 3 months ago. However, this problem started years ago. Is there any connection? Thanks, Pinksweetpea
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Old 05-03-2014, 08:52 AM #6
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Anyone in your family with similar symptoms.

Statins, for one thing, can cause muscle aches and weakness even if you just started taking them. Here is just one site.

http://www.webmd.com/cholesterol-man...f-statin-drugs
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Old 05-03-2014, 09:40 PM #7
Pinksweetpea Pinksweetpea is offline
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Confused

Thanks for your response Kitt. I just read the article you mentioned and it doesn't really sound like my symptoms, but well worth looking into.

I first noticed the numb foot about 30 years ago and it has since progressed to my other foot, up both legs and now a bit in my hands. I also have a permanent indwelling catheter because of nerve damage to my bladder causing retention and that started when I was 17yo (many years ago)! I am not aware of any family members with similar symptoms, however I do have a sister with rheumatroid arthritis which was severe.

I have been taking a very low dose (5mg) Crestor daily for a few months now with no apparent side effects. The doctor did put me on Lyrica for painful feet at night, but I had to discontinue after a month because of the foggy mind it gives you, which made my balance worse than it already was. Fear of falling is my main issue and it made me more unsteady than ever.

If anyone has any hints to manage balance issues, I would be happy to hear from them.

Many thanks, Pinksweetpea
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