I'd been tripping over for many years, it became a bit of a joke and I thought that I was just clumsy. Around 2 years ago, I was sent for physio for my shoulder and mentioned pain in my back and weakness in my right foot, having suddenly developed a 'flat foot'. From here I was sent for a 'nerve block' on my back, but it had no effect.
To cut a very long story shorter, I realised that I had 'foot drop', I couldn't move my toes and had pain and numbness in my foot and leg and was beginning to recognise symptoms in my left foot and leg.
The Neurologist did tests and I was diagnosed with (possible), Inherited PN. Further and more detailed tests showed that the nerves in the legs and feet are severely damaged, my arms and hands are effected too and i have CTS. However, in the last 5-6 months my condition seems to be rapidly advancing.
As well as the usual burning, tingling and bearable pain, I now have excruciating stabbing pain in my legs and back. Do any other people out there find that it's spread to their back?
My doctor has confirmed some muscle wastage, but some days I feel desperately tired and everything is a huge effort. I try to walk a little each day, but that is more difficult as I have a suspected torn cartilage in the knee (to be confirmed bt MRI results on Monday). There's also osteoarthritis in the knee, which will need a replacement, but there is doubt about an op because my nerves are so severely damaged. I am eating a healthy diet and am trying to lose weight, (I'm overweight at present, which certainly isn't helping). I have been tested thoroughly for lack of vitamins, diabetes, etc., but all is normal.
My grandmother was lame, but I do not know why and my mother has passed away, so I cannot find out.
As a child, I suffered severe night cramps, so bad that there were a few occasions when I didn't make it to school the following day. Did anyone else experience this? Could there be a connection?
Also, my legs have always been sensitive and tender when touched, i can remember them being like this as early as 20 years of age. I'm 65 now.
My family, not surprisingly, don't understand and I think that my husband thinks that much of it is in my mind.
I feel frightened, depressed and very lonely. It would help so much for me to hear from some fellow-sufferers out there.
I have an appointment to see the neurologist again at the beginning of October, but as nice as she is, she will no doubt tell me again, that 'it's okay, as I'm not likely to die from it'!
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Have you been tested for B12 - when the result is below 500 it becomes a neurological condition. A level of 1000 is optimal. The range is big and Docs think if you are in range then all is well. However that is due to lack of knowledge as they are not trained in Nutrition and vitamins. Drug companies cannot patent a vitamin so nothing in it for them.
Pop over to the Pernicious Anaemia Forum here on HU and spend time browsing the posts and answers to understand how little doctors know. I know from personal experience as I have spinal damage due to low B12. Docs always declared me normal with results around 300. I have educated myself and now have weekly B12 injections in the hope I can repair the nerve damge.
Scroll down for the neurological signs and symptoms. Also click onto the heading Films to watch the video of the Dr that was dying of some terrible neurological condition - only to learn it was b12 Deficiency. A good website to give you more information about B12.
Have you had thorough Thyroid Testing - not just the TSH ? Also have tested your Ferritin - Folate - VitD in addition to the B12. All need to be OPTIMAL for you to be well. Never accept normal from a Doc/GP - as that is an opinion and not a result. Always obtain copies of your blood test results with ranges so you can monitor your progress.
I am not a medic - just a Hashimotos gal - with a B12 issue. You can click onto my name above and read of my journey to wellness. OK I do live in Crete which makes things easier in some areas of medicine.
Thanks so much for your reply. I have been tested a couple of times, but the results come back as 'normal'. However, I shall discuss some of your findings with the Neurologist next month.
Sorry Which results came back as normal ? - the B12 or the Thyroid ? Normal is an opinion and NOT a result. You are legally entitled to have copies of all your results so you can monitor your own progress - I always suggest people do that if we want to be well. So much is missed.
If you are seeing anyone in the NHS they will dispute that anything I have mentioned - with regards testing - is needed. They have to follow Guidelines or lose their licence to practice. Sad but true. The powers that be - like NICE - BHF - BTF - RCP are run by people who claim payments from BIG Pharma so are NOT impartial and certainly do not have the health of individuals at heart......
Did you manage to look at the B12 site I posted - you need to be informed when you see the Consultant as information enables you to ask the most apporpriate questions.
Here's another possibility to check into: my son has been diagnosed with this; possible cause--well, read up for yourself; google Anniston, Alabama and/or Ft McClellan. This seems to be the most likely source, as he was stationed there in the late 80s for a short time, but immediately started getting sick and spent most of his time there in the hospital.
Can you be more specific, cwfmom? I Googled Anniston, and just got tourist information, describing the place in glowing terms. I then Googled Fort McClellan and did find an item about claims of toxic exposures, but it said "there was no evidence" for these claims, and it didn't go into symptoms. I don't suspect I have this problem, but I am curious all the same.
To Lizziesview and to Marz; I agree with everything Marz said about B12. In the US, a deficiency level is defined as under 200, and Medicare won't pay for the shots if the level is over that. I did talk my doctor into ordering the shots for a year, but only monthly, not weekly, and I had to pay for it myself. Currently I am taking 2,500 microgram sublingual tablets, which actually raised my levels to 2,000 or above. It has had no effect on my neuropathy though, but it did stop my ocular migraines and mouth sores. I have had the neuropathy for 30 years. I developed type II diabetes 12 years ago, and it has been very well controlled ever since, yet my current doctor writes my neuropathy off as diabetic neuropathy, which is very frustrating. When I pointed out that I had the neuropathy for 18 years before the diabetes even appeared, he just snickered and said I probably had the diabetes all along and just didn't know it. I did NOT have diabetes all along, I was getting regular checkups all along, and my doctor at that time knew the two were not connected, but he didn't have a diagnosis for me at the time. It may be familial, as my older brother has neuropathy too, and has never had even a hint of diabetes. It is so frustrating to be dismissed as a crock by doctors. I am fortunate that my husband believes me, but it would be nice to get a little respect from my doctor. Unfortunately, I retired to a small town, and I would have to drive 50 to 75 miles to find somebody else, with no guarantee that he/she would be any better.
Thank you for your replies, Judmilla and cwfmom. I appreciate your advice regarding B12 and shall take it on board.
However, what I was hoping for, was to link with people who suffer from PN and 'compare notes'. Whilst my symptoms seemed to steadily increased over the passed few years, in the last 4 - 5 months, their severity seems to be accelerating very quickly. I'd love to know if others have experienced this and if so, does it slow again?
I'd also like to know whether anyone has pain in the lower back that is caused by the PN. Whilst I've had on / off pain there for many years, I've recently experienced very bad pain, which individually, does not last long, but overall can come and go throughout the night. I'm also suffering spasms there too. Is this all caused by PN, or is it something different?
The other thing that I'm interested in, is whether anyone with PN at present, suffered very severe leg cramps throughout their childhood?
Hi I didn't have cramps as a child, but from age 15 I realised that if my legs were touched it felt like spiders on my skin and still does to this day. Currently both feet and legs are numb to the knees and both hands and arms also. Told by consultant to get a stick when I get unsteady!! Some days stagger like a drunkard!! Lol
To Lizziesview: I have had neuropathy for 30 years, but my symptoms don't exactly match yours. There are many types, I think, but I am not a neurologist, so I can't make a diagnosis for either of us. My symptoms have increased very very gradually, over that 30 year period. For the first five years, I was not even very aware that I had a problem. My feet were a little numb, but it didn't really bother me, and I ignored it and didn't take it seriously. My wake up call was when I stepped on a four inch rusty nail, which came clear through my foot, and I never felt it. I had a full neurological workup, and he just told me I had neuropathy, but he didn't know why. It began to be painful a few years later, with occasional shooting pains in my feet. A few years after that, the pins and needles started, but for the longest time, it was mild, and I didn't take the gabapentin for it because the side effects seemed worse that the neuropathy it was treating. Lately though, it has worsened sufficiently that I am more willing to put up with the side effects. I also feel like it is starting in my hands. The tip of my right middle finger has become numb. I've developed a tendonitis in my left hand that may or may not be related. Over the years, I have become completely incontinent, and the urologist told me it was neurological, but he's not a neurologist, so he can't give me a diagnosis. I have a gait disturbance, that the rheumatologist told me was not caused by my arthritis, it is neurological, and.....you guessed it, he's not a neurologist, so....... still no diagnosis. I had a second workup by a neurologist, and no diagnosis from him either. And now I have to put up with the insult of having my new primary care doc snickering and telling me I probably had diabetes all along and just didn't know it. I just want to know what it is, and what the prognosis is. It is so frustrating to be dismissed so casually by doctors, and to be not believed when I give my history.
Hi Judmilla, thank you so much for sharing your experiences with me. It's a weird, horrible disease and probably the worst of it is, as you say, that it seems we're not given any satisfactory answers.
I have numbness in my feet, legs, and now fingertips, but I don't think it's numb enough for me not to feel a nail - how awful for you. I also get pins and needles, the feeling of insects crawling under my skin and now, unbearable stabbing pains, often accompanied by muscle spasms. The night is always the worst, which does seem to be a fairly common trait with most sufferers.
I have to walk with a stick, otherwise I fall on a regular basis; I have foot drop and muscle wastage and am wondering whether I am on my way to being wheelchair bound and if so, how long? There seem to be very few answers.
May i ask about your incontinence, please? Did it start with having to suddenly rush to the loo and once there, it was difficult to empty the bladder completely? Also (I do hope it is okay to discuss this), each time you 'went', was it usually 'a bit of both'? This is the stage that I'm at now.
Did you experience severe childhood leg cramps at all?
As you say, there seems to be different 'types', or at least, people are affected in different ways.The sudden increase in severity has been quite frightening, hence my reason for wanting support. I still only take Codeine and Paracetamol, but often this doesn't touch the pain, but I shall stay away from the heavier medication for as long as i can cope.
Looking back, I can see tell-tale signs of having the disease, but like you, not bad enough to really take any notice. I always remember my legs being abnormally tender, 45 years ago! The only comfort I have, is that what's happening now, didn't happen in my 20's.
My doctors seem to be slightly more supportive than yours, but the disease certainly doesn't appear to have the interest, time and support given to its sufferers, in comparison to e.g. MS patients. It really seems that the answer is, they just don't know.
I don't mind sharing details. There's always the chance that some of us can help one another by sharing information. No, I didn't have leg cramps as a child. The numbness began about 30 years ago. The sharp, unbearable shooting pains down my feet began around 20 years ago. That comes and goes. The pins and needles did start later, and after the diabetes, but I really don't believe it has anything to do with the diabetes, which has been very well controlled, and in fact so well controlled that they had to take me off the meds for it for a few years. My fasting morning blood sugars run anywhere from low 70s to high 90s. I have no other complications of diabetes. My retinas and kidneys and all that are fine. I use a cane, not so much for support as for balance; I am at a constant risk of falling, so if I am standing on three points, I am less likely to fall than if I'm just on my two feet. As for the incontinence, that also was very gradual. A dozen years ago, it was at the point that I used a pad a day, whether I needed it or not, but I usually did need it. I was taking medication for bladder control, but it was increasingly ineffective. Then eleven years ago I developed cancer, and had chemotherapy and radiation treatments. I became so weak, I simply could not be getting up and running to the bathroom frequently, and I was too nauseated to hold the pills down, so I graduated to using "Depends". I figured I would get back to baseline after the treatment was completed, but that never happened. I recovered from the chemo, and I survived the cancer, but I was never again able to live without the "Depends". No medication ever worked again, even partially. I tried Botox injections to the bladder, and that didn't help either. It just gets steadily worse. And yes, sometimes it can be "both". It is an enormously difficult management process. It is so difficult to lead a semblance of a normal life, and to avoid public embarrassment, and to maintain hygiene. I firmly believe that the neuropathy, the incontinence and the walking difficulties are all the same diagnosis, but I just have no idea what that diagnosis is, nor what the prognosis is. I don't know if this is just going to remain an enormous nuisance for the rest of my life, or am I destined to be paralyzed and bed-bound at some point in my future. It would be really nice to have some answers, and it would be even nicer if any of these doctors would actually listen to me and believe me.
Oh Judmilla, you have been through so much, I'm so sorry.
It certainly does sound as the symptoms are connected to neuropathy, or maybe the neuropathy is linked to some thing else? That is the very worst part - not getting definitive answers - the 'not knowing'.
Thank you again for corresponding, I feel less alone and I hope that there will be a light at the end of the tunnel for us all x
I understand . I'm in too much pain right now to even type . People do think we are making this pain up in our heads ! Like we really LIKE ALL THIS PAIN ???? NO !!!
I like you are so depressed ,,, I really hope it gets better for you , I'd type more but I'm in too much pain .
Hello Lizziesview. I also have PN and was diagnosed only 6 months ago once I had moved to a different city hence to a different practice. I suspect I've had it most of my life. Symptoms are weird to start with, not as frequent, milder and annoying rather than painful most days with some very painful peaks which always seem to become milder again by the time you have managed to get an appointment. You end up questioning your sanity, and decide to believe the GP when tactfully he makes you understand that it is all in your head... Until the next time and then not wanting to be made feeling like a fool again, you accept the peaks knowing they will go away and you learn to live with it.
This until they start to affect your life to such an extent that you have to stop the gym, the running, the long walks and accept that some days you are so ridden with pain that the best option is to be the laziest person on this planet. Some pains become constant (or at least constant for a couple of months) and then move to another part or are everywhere at once. I could hardly walk 2 months ago with my Achilles' tendon feeling as if it was going to snap and so much burning below my inside ankle and heel. At the moment, it is in my wrists, arms and hands - the burning and shooting pains some days are intolerable.
Like you Lizzie I had cramps in my toes and feet as a young teenager ( my sister still remembers me holding my feet to get them to go) and I have had them all my life. Funny thing though is that they are now virtually non existant since the shooting pains and burning pains have really taken hold!
Like you I also have shooting pains in my lower back (not as frequent as limbs) and I am walking on eggs all day just to contain them. Some days it feels as if something or somebody is pulling on my limbs to detach them from my body too or on my arms there is a pressure as if I had a garrotte.
The first time I mentioned to my then doctor all those weird things was in November 2015 who of course was itisallinmyhead doctor. I waited until February 2016 to pluck up to the courage to go to my new GP who believed me but after 2 appointments I was told it was not diabetic NP, nor lack of B12 so I was sent on my way with some pills for my RLS ( Parkinson' disease pills!!) which was not even the worse of my issues and I did not take the pills.
I went back as pains were getting worse and saw a different doctor who did a test to eliminate cancer having returned (I had it beginning of last year). At the second appointment she finally decided I needed to be referred to a neurologist and gave me some pain relief pills that made me so ill after 4 weeks that I ended in A&E with huge palpitations and feeling so exhausted that I thought my heart was going to give up on me.
I have been prescribed Lyrica but I am waiting to take it as I am undergoing tests at the moment with a neurologist to determine the type of PN and the extent of the damage.
I rest a lot and on a less painful day I go for a walk or do a bit of decorating which usually sets me back completely and make me regret my attempt at doing something interesting and normal... Gone is the late fifties lady who used to go to the gym 2 or 3 times a week, ran 5 km and had a very good job. I haven't worked since my cancer last year, not because I don't want to but simply because I can't as any physical activities or stress seems to worsen symptoms.
On Saturday I am having a nerve and muscle function test and I can't wait to have the result of the MRI scan. I want to know the 'why', that is all for now. As from the forum I seem to understand that all the pills are only given to relieve the pain but do not cure the problem, have side effects and work only for a while, I am taking each day as it comes... Tomorrow I might decide that Lyrica needs to be started and I will, but let's wait as this day is almost over and I have managed to get through the day ( night time to contend with though!)
Does anybody also have permanent cold feet, crushing feeling in the thorax, a chronic cough, chronic sore throat and loose their balance ?
Made me feel better to type all this, not good for pains though!
Sjmiji, thank you so very much for your reply, I almost feel like crying (with relief), to finally find someone with conditions near to my own.
The crazy thing about this disease, is that there are so many different symptoms popping up. As you've described, the really unbearable pain can come, last several days and when you think you can't take any more - woosh - it's gone, but only to be replaced by something else.
I've always been a warm blooded person, but yes, like you, in the past year my feet have been like blocks of ice.
My fingers and toes will be crossed for you, for when you receive the results of your tests, good luck. I've had mine completed and they confirmed extreme nerve damage in legs and feet and moderate damage in arms and hands. The consultant also concluded that my PN is hereditary, but this was only because he could find no other cause, (although I do think it's quite likely). I'm not on medication yet, as like you, I shall hold out for as long as possible. It's only when the excruciating pains come, do I think I need something. The burning, electric shocks, etc., etc., I'll put up with for as long as I am able.
To answer your questions - my throat seems to close easily these days when I'm eating, however carefully I eat, i often end up (mildly) choking, as it seems to catch in my throat. However, I don't have a sore throat.
As for balance, my best way to answer is - 'what balance'!!! I have been falling for years periodically, but around May this year, I seemed to be falling up to twice in three weeks. At that point I saw the consultant again who said that I must use a stick, as the nerves in my legs are so badly damaged, that if I fell and broke a bone, I would not be able to have an operation and the nerves are too far gone that I would never be able to walk again. I used a walking stick from that moment on and, touch wood, have not fallen since.
Having said that, I'm due for an op next Friday, as I've a torn cartilage in my knee. The surgeon has reassured me that it will be ok, but because there's arthritis there too, it's likely that I'll need a knee replacement in the future, but he added that this may not be an option due to the PN. I am overweight, so I've had a wakeup call and am eating healthily, determined to lose weight and keep the arthritis away for as long as possible
I guess, with my cartilage, I'm the same as you, (with your Achille's tendon), in that trying to do anything 'normal', however small, is near impossible and I find myself sitting around to avoid the extra agony. I'm pinning my hopes on the op being successful, so that I can start walking and doing things again.
Do you live in the USA, or the UK?
Please let me know the outcome of the tests, I'll be sitting here rooting for you.
Hi you two! Am identifying with so much of what you have both written, that I thought I should just let you know there's another one around! It's kind of weird how there's so little known or even acknowledged about PN & yet on this site it's obvious that there are lots of us living in fairly desperate circumstances. I held out for years on not taking medication, but things got so desperate last year, I had to give in. I'm now taking Gabapentin (4×600mg/ day) & have to say it has definitely brought the pain down to a more manageable level. My life over the last 30 years has changed beyond recognition. I used to be a PE teacher & my life revolved around sport. Then I got a really serious dose of ME, which gradually evolved into arthritis & then peripheral neuropathy. The last year has seen a serious deterioration which has basically got me housebound. Anytime I do feel well enough to venture out, there's always a huge price to be paid in terms of pain & fatigue. I did have extremely painful growing pains as a child, but have never really connected that to the PN. I also get really severe lower back pain which comes & goes for no reason I know about. I have tried to cling on to some semblance of a social life as I discovered, about 6 years ago how therapeutic singing was ~ a lot of fun & making new friends. However, I`m now unable to go recently & that is almost like the last straw. Nobody seems able to predict what the future may hold & I also am a bit concerned about the possibility of a wheelchair in the future. I live on my own & it's so important to me to be able to continue to manage on my own. Anyway, I just thought I'd say hello & wish you & anyone else who's struggling the very best. Much love, Chris xx
Thank you to all who replied to my call to being 'isolated' It had helped knowing I'm not alone although I wish you weren't suffering. Best wishes to all.Pendleton.
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