Peripheral Neuropathy

[NumbBunny]

@TallKeith, I am new to this community but read your blog and I too am affected across the brow eye area caused by the peripheral neuropathy, I also am numb in feet calves and hands. I have been on Lyrica and it helped for awhile and I though it may have been responsible for being unable to urinate properly-have since found out it can be the neuropathy condition as a whole. My neurologist decided to change the medication to an anti-depressant which I will not take as other blogs indicate - possible relief but huge weight gains which I can only surmise as compounding the condition even more so. I am going to suggest to my G.P. vitamin B12 and see what his reaction will be. If you have had any more luck in finding relief, I would be happy to hear as I am the same age as you, and whilst Life has been good until now, I would love to enjoy a lot more. Good luck to all with any disease for sickness is no fun.

[Cb1963]

Yes there's every chance you might end up gaining weight,however have you weighed up the pros and cons? I myself take 1 30mg mirtrazapine at night time and I would be in a physical mess without this medication,its the only way I get some sort of sleep,and if your able to do any exercise you might be onto a win,win situation,like with any health condition sleep is a way the body needs to repair it's self,and if you're body isn't fit then your brain can not be as alert as it might be,which can then lead to other problems, so don't dismiss the anti depressant out of hand totally,and good luck

[NumbBunny in reply to Cb1963]

Thank you Cb1963 for your advice, but I was on anti-depressants for 8 years and finally weaned myself off them, as I was living in a fog. I understand the reasoning behind the medication, but it's not for me as I gained approximately 25kg or so, imperial measurement, roughly about 5stone or thereabouts, and for someone who had never been bothered by weight gain, the road back was tough.

The replies I have received have been most helpful and I thank you once again, hopefully I am able to find a natural way to treat, if not cure (who knows) this very uncomfortable condition and wish you well on your journey.

Your input is most invaluable.

[Cb1963 in reply to NumbBunny]

as we are all different,certain meds will have the same side effects and yet work on our ailments as they were intended,and I wholeheartedly agree with your reasoning,I have tried various meds and this is the one for me,I have had severe headache's on other meds,and as long as I don't put any more weight on I'll have to stay put with the devil I know,so good luck and stay healthy

[NumbBunny in reply to Cb1963]

Thank you Cb1963 - Good luck to you also.

[TallKeith]

Many thanks for the reply @NumbBunny . Across the brow is exactly what I feel. I have been prescribed amitryplitine (sp?) but not taking it as I'm managing without. Need more sleep but getting enough! I'm also taking 100mg alpha lipoic acid with the b12. I go for a walk every day, but I feel quite weak - 30 mins max. Seems worse in the morning.

I'll report back any changes with the b12. I'm sorry you have this too, but I don't feel so alone hearing from you.

[NumbBunny in reply to TallKeith]

Hi TallKeith

Thanks for your reply, I had been taking a formula which I bought online, consisting of the Alpha lipoic acid with B12 & B1, now called Nerve Review, which was then called Neuropathy Support Formula, but alas I feel the dosage was perhaps not strong enough and sought help via pharmaceutical means, which led to odd side-effects and so have been researching all I can about Peripheral Neuropathy, as I do not wish to end up in a wheel-chair. I have been diagnosed with Parkinsons and I am now questioning that particular diagnosis also, as it seems there are many similarities regarding quite a few of the symptoms, anyway, another long story.

Please feel free to drop me a line whenever you do feel as though you are battling this dreadful condition alone.

Btw, at least you are managing to take a walk (please keep it up if possible) - I am limited as my feet are painful and finding a comfortable enough pair of shoes to suit the task has not been too successful.

As I read back what I have written, the thoughts going through my head are - whatever happened to that healthy (can't keep a good girl down) individual that was on the go constantly? I don't enjoy having a whinge about my condition, but under the circumstances, we are all in the same boat and a round-table discussion is (pardon the pun) just what the Dr ordered. Lol,

All the Best

[parasann in reply to NumbBunny]

As for the feet I live in Birkenstocks....

[43-19gummy73]

43-19 gummy73

Hi Numb Bunny

I feel your distress and admire your spirit. I have DPN for the last two years and now in a wheelchair BUT thru' my own research things have improved as far as the excruiating pain is concerned, I to was on several types of antidepressants and anti epilectic drugs to try to damp the pain down although only partially successful and the drugs become mind numbing after some time and your abilty to respond with a good emotional tone and with a background depression, definately not the person you know you really are, and can be. My study led me to the encouraging results researchers where having with vitamin D3 in reducing the pain of DPN and also some indication on glycemic control although still working on that. The amount of D3 in the blood required for allot of sufferers appeared to be between 80 and 100 ng/ml for the desired effect, I started to get that with taking 5000iu per day( after around 2-3 weeks and weaning off the other drugs) it may need more with others, 5000 and upwards say to 10000 needed , the toxic levels can go well beyond 20000 ic, speak with a chemist first before your doctor who may try to put you off, give it a go. You indicated vitamin B12 ! As long as you are taking psychoactive drugs ie antidepressants and others these are known to deplete vitamin B9 an important vitamin for good brain fuction, supplement this ASAP. If you are taking METFORMIN supplement with B12 for the same reasons, all I can say is keep researching all the time, new findings are always coming up, not all successful but you will have your finger on the pulse, LONG BEFORE GP's and SOME OTHER SPECIALIST Its your life so be your number one advisor and get information then ask the professionals for comments on YOUR findings. It is most enlightening you will find. GOOD LUCK

[TallKeith]

Hi @NumbBunny

I know what you mean about 'what happened to that person i was?'. Its a bit depressing but I have to try and keep going. Went to a fair today - had half a pint of beer - sat down and listened to a jazz band. It was worth getting out of my chair for, but cant say I felt too good.

Anyway, I've received my first blood test results that weren't normal in the post today.

Apparently my P-ANCA is moderate positive, and mildly positive Smooth Muscle Ab.

Dr Google is not much help here, so I'll phone doctor Monday morning and see if he has any idea what it may mean.

Maybe a cause has been found for my PN that can be treated? (Clutching at straws again...)

[NumbBunny]

Hi Tall Keith - Happy to hear you got yourself mobile, if only for an hour or so. I go to visit my G.P. tomorrow and will then inform him of my decision to try to alleviate the discomfort & suffering of this dreadful ailment namely Peripheral Neuropathy by replacing the prescription drugs for the natural vitamin supplements my brain obviously requires. However I will ask him what his suggestion would be regarding the dosage. I will keep you posted. Thanks for your email. It's great to be able to converse with other sufferers, as i'm sure it must all just sound like a big whinging session to non-sufferers. I'll keep you posted. Bye

[TallKeith]

I'm beginning t think I'm a hypochondriac.... but.....

Another test result - Protein in urine. Positive ++

Kidneys damaged i think.

maybe Vasculitis is the cause of my PN and kidney damage?

its not easy getting to see a consultant on the NHS is it!

Feeling weaker all the time but still walked 30 mins today.

1000 mg Vit B12 has not affected my PN in any way that I notice.

[NumbBunny]

Hi TallKeith,

It must have been esp or something as I haven't checked my emails for a few days and I was going to drop you a line. I'm not sure, but I think my urine is ok and I know my kidneys are in working order, but when I first went to see a neurologist it was for the PN and that's when he also diagnosed me with Parkinsons Disease. It's a little like which came first, the chicken or the egg, because many of the PN symptoms are similar to Parkinsons, the only difference I am seeing, is with PN you don't have tremors just a lot of pain and numbness of the limbs and in our circumstances, face also. I started taking not only Vitamin B12 (activated - dissolves under the tongue), but also High strength B1, Alpha Lipoic 300 (antioxidant recycler for nervous system), Magnesium and Vitamin D in a large dose. I was quite surprised at my GP's reaction when I suggested the vitamins - that's right - he fully endorsed the idea and said it was worth giving it a try. Although it is still yet early days, I am not suffering too much pain, but unfortunately the numbness and burning are still causing havoc, especially when I have been sitting for awhile - whilst on my pc and I get a build up of fluid (odema) mainly in my feet and ankles, depending on how long I had been sedentary, but I don't have a clue as to whether the odema is part of the neuropathy or from the medication for my Parkinsons. By the Way, you are not a hypochondriac and that coming from someone who knows and is suffering the same ailments. I was seeing my GP for a number of years, telling him of my discomfort, and coming away for a very long time thinking perhaps I was imagining this - but it was damn real alright. All I can suggest is keep up the exercise - something I keep telling myself to do but am always on the pc for one reason or another (probably because I enjoy it) lol. You asked me about difficulty in seeing a Dr on the NHS. I am in Australia and we have something similar, although I think our Medicare is somewhat superior although depending on who wins the next election here on July 2nd, all of it may change and we have been forewarned depending on the outcome that medicare will no longer be free medical service) quite possibly for the simple reason that we do not have the population that the UK has. I believe the population of our large country is something like the population of London alone. A vast difference, so I guess we are somewhat luckier for the time being at least. Please keep in touch and let me know how you are progressing and I will ask my gp about protein in the urine. Until next time then TallKeith, I wish you positive progress and remember if you are a hypochondriac then so are we all, Bye for now

[TallKeith in reply to NumbBunny]

Well. it moves on... Nerve biopsy in two weeks plus lumbar puncture, brain scan and probably a ct scan. Symptoms are getting worse, but slowly rather than the fast progression in the first few months. Still mobile, but not so easy.....

Not looking forward to the nerve biopsy but I really dont have any alternative I think

[tolliebob in reply to NumbBunny]

i have dealt with pn 15 years eariy on i heard about metanx for 2 years a miracle drug graduall lost its effect only one company controls the drug give it a shot.

[Fuckyou22]

I do not have peripheral neuropathy however I was diagnosed with disc degeneration put on heavy pain medsinformed i could ed upp in a wheelchair and incontinent and left to deal with it. After couple years of being depressed I decided to take matters into my own hands. I now take vitamin and mineral suplements eat as well as possible, fresh and organic. I educated myself on the spine and nerves and the brain and I do yoga. The yoga is amazing. So Ive gone from 10-12 pain meds a day to 2. I also use Tens machine for my shoulder tension. Once I get a bit more money Im investing it in a private PhysoTherapist my friend using to help me on my posture as it still needs a little bit of work. Ive recntly discoverd it Over Pronation that has caused the initial lower back,problem then over years manual work. So what Im sayingnis EDUCATE, YOGA AND EAT AS WELL AS POSSIBLE. ALL THE BEST