im curious to know if anyone else has had muscle wasting on legs and buttocks, i am and wondered if it could get worse? i have pn for 5 years now .
I too have had pn for over six years now and was aware of muscle wasting in the same areas as yourself. It turned out that I had an untreated vitamin b12 deficiency owing to stomach/bowel problems I have had for some time also.
I don't know if your doctor has checked your vitamin b12 level, but if not ask him to check it as soon as possible. If you have had it checked previously, don't just accept that it was "OK" without knowing what your actual level was.
My levels were low/normal or borderline whilst I was having exactly the same symptoms. If you are at the lower end of the normal range, then ask your doctor to check your serum homocysteine and methylmalonic acid levels. These can identify a b12 deficiency whilst you are still within the so called "normal" serum b12 range.
yes i have a b-12 disorder called pernicious anemia and it has caused me some major problems because since 1999 , the quack i was going to counldnt figure anything out it took a neurologist and my research on b-12. my life has went down hill if that doc would have just checked my b-12 levels instead of throwing prescriptions at me i wouldnt have been threw what i have, i know i sound negative i was once but since i almost died from it with the mone marrow failu8re ive learned to take my legs and keep going .well some days i cant go but at least im alive.
I find it hard to believe that there are so many people, just like you and I, that have been put through the mill by doctors who should know better.
I did not know that you had been diagnosed with b12 deficiency, but I knew the problems you mentioned with the muscle wasting was so similar to mine. Do you know what your b12 level was when they finally realised that you had this problem. It sounds, like me, that you were aware of the problem before your doctors did.
I know from reading about many cases like yours, that improvment can still take place, sometimes years after damage has been done, so we have to live in hope. I also know that some damage is too far gone to be repaired.
What treatment are you on at the moment, are you getting injections of b12 or are they treating you with oral b12. Do you know what they have managed to get your levels up to ?
I know that Pernicious Anaemia means you have a lack of Intrinsic Factor, which is needed to absorb b12. I had a Schilling test, which is suposed to identify PA, in 2000 but it was normal. I have an inflamation problem in my stomach/bowel and diverticulitis which is suspected as the cause of my deficiency. Did they find any similar problems with yourself?
I hope you are managing OK and that your condition gets better with time and treatment.
thank god someone who knows what this is like,
yes i have b12- injections once a month now was getting them once a week for 2 years but the nerve damage was to far gone.They check it once every 2 months because they might have to give them to me every other week if low. i have the inherited pernicious anemia. they did a shillings test on me is how they finally found out.but it seems to me since this caused this pn that no matter what exercise i do the pain and the wasting gets worse. i think i have read all these post and sometimes i wonder about ms because it has so many effects to body as does pernicious anemia, i never would have dreamed in a million years that a vitamin deficiancy could mess up your life so bad. thanks for responding to my post go to neurologist in march he is so busy it takes forever to see him but ive noticed my body has gottten alot worse since last time i seen him. i know this may sound crazy but im thinking about making a list of differnet things that has gone wrong since my last visit to him . u take care
Please donít confuse PN (peripheral neuropathy) with PA (pernicious anaemia) they are 2 completely different diseases.
It would seem that you all have pernicious anaemia is that correct? PA is caused by B12 deficiency and as you are aware it is treated with B12 injections. These are given close together to start with and I believe after initial treatment they are given monthly or three monthly for life. How much and how quick you respond to this treatment depends on how quick it was started after you first became aware of something wrong.
PA can and often does run in families.
I wish each of you a speedy recovery and please let us all know how you are getting on
Have your copper levels checked also. They thought my daughter had a B12 deficiency also. But her copper levels are low. It is rare but it happens.She has been going to the doctor for 7 years. No diagnosis. No explanation of her symptoms. She is now in a wheelchair. Cannot walk. Her hands are drawn. Have a heavy metals test. Immediately !!!
Hi Sissylisa, sorry about the delay in getting back to you, I was away for a few days.
I'm sorry to hear that despite your b12 treatment, you feel that your condition is still on the decline. I think it's a good idea to let a neurologist have a further look, it's just a pity that you have to wait until March. I think your idea about writing down your symptoms, and maybe the way they have progressed, is a good one. If you are anything like me, you end up coming out of a consultation and then remember umpteen things you wanted to say. I know that b12 deficiency can have a pretty bad effect on the memory and concentration.
Are you in the UK (as I am) or elsewhere, I know the waiting lists here are pretty bad.
I agree with you, it's seems incredible that a simple vitamin deficiency can cause so much damage, and even more incredible that so many doctors are very poorly read up on this condition. I know that I had very strong suspicions that my "unexplained neurological symptoms" were down to a b12 deficiency, but my b12 levels had to drop into the clinical laboritory deficient range, before any notice was taken. I know that so many people suffer serious problems whilst in the low/normal or borderline area. If you are like me and stay in the UK, our acceptable levels go down further that many other countries, such as the US. I hope things go well for you in March and that you feel a bit better soon.
Hi ms Jalien, you certainly are not alone and I think there are an awful lot more people who are struggling on either with no diagnosis, or are told they are suffering from stress or Chronic Fatigue. Your doctor is wrong, and Jake who responded to you is spot on, Pernicious Anaemia does have a habit of running in families, it doesn't mean your kids will develop this condition, but they are more at risk of doing so. It is one of the first questions that a doctor should ask if he suspects you have P.A. I hope that the treatment you have started will have you feeling better soon.
Hi Jake, you are right to point out that PN and PA are seperate conditions, even though it is not uncommon to have both at the same time.
I don't have Pernicious Anaemia, or at least I passed a Schilling test which is supposed to specifically identify it, but I do have a b12 deficiency. The likelyhood in my case is that the reason for my deficiency is likely to be related to the inflamation problems and diverticulitis which has shown up on various endoscope/colonoscopy examinations. I may have damage in the ilium (top of the small bowel) where b12 is absorbed.
Pernicious Anaemia is a condition where the stomach does not produce a substance called intrinsic factor. This is needed to help in the process of absorbing vitamin b12, and where it is absent or insufficient, eventually the body becomes b12 deficient. In effect, Pernicious Anaemia is not actually caused by b12 deficiency, but rather that b12 deficiency is a consequence of having PA.
I could not agree with you more when you mention the importance of starting treatment as soon as possible. So many people, like myself, end up with Neuropathy which first effects the peripheral nerves (PN) and if untreated can then effect the central nervous system. I first went to my GP over six years ago with slight occassional tingling in my lower legs, and by the time they have realised what has happened, I have constant burning in legs and arms, tinnitus and hearing loss, blurred and at times slight double vision and general muscle wastage. Had this been taken seriously a lot sooner, I would still have the active lifestyle which I loved.
I know I go on a bit about this subject, but I really think that undiagnosed b12 deficiency is a big problem which many doctors have not woken up to yet. This is despite countess reports and studies which highlight reasons for failing to identify it, and the terrible damage which often follows. Although I am new to this site, everytime I see someone posting about unexplained fatigue, in particular where there are neurological symptoms, and maybe related stomach/bowel problems, I always put my tuppence worth in. I don't want people to suffer in the same way I have when they just don't have to.
I don't know if you also have the same problem Jake, but if so I hope that you are doing OK.
Sissylica.....I to have pernicious anemia, was diagnosed in 96 by a real neurologist after suffering the LLemeritts syndrom(sp). I previously went to a female neurologist 3 yrs prior and she did MRI, CTscans etc and then told me the lesions on my brain were just old age(45)and went home thinking that way to. I got so bad I culdn't perform my job sufficiently and my boss told me to see a dr as I was incoherent at times and I deal with the public. At least I did get in to see a good guy finally and my level was 86, it took over a year just to get my level up over 500 and I was pretty close to losing alot more than my memory, and I have irreversible nerve damage, polyneuropathy and my memory is slowly coming back, I lost my long term memory a bit, couldn't remember raising my kids etc etc. I still have a poor balance and gait and muscle weakness in the upper extremity. I give myself injections in the thighs, my hubby will do the arms and we have been doing this for about 8 yrs now. I didn't start to feel really well for 2yrs into my injection schedule so dont' give up hope and some things took even longer to get better, my concentration is still lacking and the memory just in the last 2yrs is getting better, some things will not but I was dangerously low for years and I'm just glad some of it is coming back.
Very good posting by you. You put the case for B12 malabsorption very effectively. I know of someone on another forum who was literally at deathís door in 1999, and they just found out in time that she was badly B12 deficient. She is now well out of danger and has made a dramatic recovery with the exception of the weakness in her body. I am glad to say that that too is recovering, if very slowly.
I never knew until reading this ladyís account that B12 malabsorption was so widespread and so devastating if not caught early.
In my case I suffer from idiopathic (cause unknown!!) sensory PN which is almost exclusively in my feet. It has been very painful for the last eleven years. I take 2400mg of Neurontin which I hate and am trying to come off of. I take loads of supplements, B12 methylcobalamin and a B complex plus a much larger list due to the recent discovery that I am borderline diabetic.
I will just mention one other aspect regarding B12. B12 deficiency is measured in the blood serum and is almost meaningless. There are so many differing accepted measurements on serum tests. They kind of average out (according to where you live) to between 200 (low) and 800 (high). If a person at the low end takes a few B12 pills their level shoots up high but they could be malabsorbing. If that person has not taken any pills then they should have methymalonic acid and homocysteine and folate blood tests to see if the B12 is being absorbed by intrinsic factor into the tissues where it can do its work. These tests are widely done in the US but not so often here in the UK. You may have known about this Graham but I thought it worth posting for others.
I am so glad that we have both emphasised the B12 case. As you say, there are so many out there who would be saved dreadful pain ,trauma and disability if they get it checked and checked properly. Like you, I always put my tuppence worth in whe appropriate.
hi there all, You know sometimes when a person goes threw something so debilitating and frustrating you think your the only one in the world with this problem.
I know different now. i know this will be long but want to tell you about how all this illness came into my life.
When i was young i stayed sick quite a bit but parents and doctors said id probably grow out of it. well im 38 feel 108 haha and when i hit 33 my life went to u know where fast. I was working in a deli very strong worker finlally made assistant thought evrything was coming together. woke up one morning my hands were numb mmmmm tried to figure out if maybe i had gotten into chemical that could have cause this so i shrugged it off. went to doc 2 weeks later was numb in feet, nutty doc couldnt figure it out said i might have got bittten bye something gave me some antibiotics same as always thats how he took care of all my stomach problems also. well 1 week later the numbness had went to my hips couldnt walk kept falling so the quack finally sent me to a nero finally maybe some help. he did blood work on me that was unbelieveable dang vampire haha, but god love him he saved my life bb tomorrrow to finish this .
ok im back,
well about 2 months after all the numbness started i started losing like 10 pounds a week thought i was doing gr8 on wieght haha didnt realizt it at the time but it wasnt from me trying. iwas vomiting everyday at work. my regular doc said you probably just have an ulcer geez could hurt him now. so about a couple days later my nero called me and said lisa he needs me in the ofice fast as possible. i knew i was sickand i was gettting frsuatrated and so was the nero he knew my b-12 was almost zero in my body buit why. so i started looking up b-12 disorders and came across this crazy name. and the day i came to see him before i mentioned the pernicous thing he said my blood was really bad so he put me in hospital but the day before i went into hospital they did the shillings test and i was correct. but when they put me in hospital i went into a neutropenia stage, had to recieve blood and i think worse the the bone marrow biopsy that HURT. where my regular quack doc didnt check my b-12 levels a few months earlier muscle damage and nerve damage are permanent i know have gait, pn, babinki thingy i dont know how to spell it or pronounce it . so i know you all are bored but please write back and let me know about how you found it what is permanent and anything esle you want to tell me, its kind of refreshing in a way to find someone who knows what i go threw or similar i love my family and friends but they are clueless. god bless all and take care
hey nancy at least we can blame the disease on our memory and not our age haha. try to get ya to smile . this is 1 crazy vitamin i never in a million years would have thought that vitamins could do so much damage if your body was low or out of them. god bless you will keep you in my prayers.
Well Lisa, you asked, so here goes. I started having problems early in 98, I did not pay too much attention at first, it was just occasional tingling in the lower parts of both legs. A few months later this was becoming more persistent, I also had slight tightness in my right calf and I started to feel slightly light headed. My GP did not think this was anything to worry about, although I knew something was going very wrong.
Looking back, this was the big stumbling block in finding what was going wrong, I pushed to have further investigation, and as my doctor did not think it was neccesary, he eventually sent me to a neurologist although his letter more or less said there was nothing wrong and that I just needed reassurance. I still cannot understand why he took this stance, particularly when I had no history of stress or anxiety and had been at the same practice for over 20 tears, he should have known better. The Neurologist did a quick once over and that was that (no blood tests at all by neuro).
As no further investigation was to take place I was left with the option of doing nothing, whilst I was getting worse, or trying to find what was going wrong. I'm used to investigating things (that was my job) and tried to put as much information together on the internet to see what possibilities there were for my symptoms. Other than degenerative neurological diseases, which the neuro said I definately did not have, the one condition which could cause simlar neurological symptoms was vitamin b12 deficiency. Even when I looked at the causes for this condition, the fact that a few years earlier I had started having stomach/bowel problems (swelling and discomfort) which a colonoscopy & endoscopy identified as severe in flamation in the duodenum and also at the top of the small bowel, the Ileum, which is the site that b12 is absorbed into the body, fitted in with problems which could arise.
"Eureka", I thought, and I headed to my GP to full of hope. My b12 was tested and was 289pg/ml with the range being 155-1100. I also knew at this point that low/normal states could be a problem but my GP was adamant that it was OK. At the start of 99, after my Gp had reluctantly sent me for another neurological examination, where I was basically told I was not listening to the first neurologist, I received a letter from the 2nd neuro saying all tests were OK but he noted that my b12 level was "a bit on the low side" at 197pg/ml. Again I headed to my GP showing how this had dropped, but again I was told it was still ok.
I moved GP in 2000 as my symptoms were far worse and nothing was being done. My new GP tested my b12 at 192 and a few months later at 189, but still I was told this was OK. I was sent back to the first neuro, who told me before we started that she thought this was all stress, even though she found I had reduced ankle responses and some nerve abnormalities. She knew surprisingly little about b12 deficiency. She did however agree to carry out a Schilling test, which I passed, although at the lower end of the pass scale. Again I was left with no answer.
In Dec 2002 I was sent for hearing tests, as I had developed tinnitus and my hearing was becoming a problem. I saw two doctors, two months apart, who told me they thought my tinnitus and hearing loss was due to a neurological problem and asked my GP for a fresh neurological opinion. My GP was very unhappy about this and reluctantly arranged a third Neurological opinion. I saw this Neurologist in Sep 2003, the appointment took about fifteen minutes tops, and ten of that was me listing what was wrong. I was told I had seen two very good neurologists and he did not see what further could be achieved (fresh opinion?). For my examination I merely removed my socks and was told he would ask for my blood suger to be checked but nothing else. I again raised the possibility of b12 deficiency, but he would not even consider re-checking this.
This was the absolute low point of my life, I knew I was not being listened to and had been dismissed with no posibility of any further investigation. In desperation I searched to see if I could arrange tests myself, and found a company that would collect blood and submit it privately to a lab in London. I had this done two days after I saw the neurologist and my tests came back b12 abnormal at 165ng/l, normal range 179-1162. The report also suggested that my neurological symptoms could be as a result of b12 deficiency. I handed the report, and a letter, into my GP who immediately changed his views and decided to start b12 treatment.
Now this is where Sod's law always comes into things. Before I start my treatment, my Gall Bladder goes on the blink, I end up jaundiced and with all my blood levels pushed sky high. My ferritin by over 1000% from earlier in the month, and my b12 by over 400% to 577. In hospital they are not sure why my b12 rose so sharply, although it may have been to do with the blockage in my gall bladder causing presure on the liver which realeased any stores.
My Gp then tests my b12 evry six weeks/ two months and it dropped to 249, 197, and 170. The last test after a month of oral b12 given to me by my GP.
As Jake so rightly pointed out, Homocysteine and Methylmalonic Acid are tests which are helpful in the identification of b12 deficiency, even when the serum b12 is in normal range. My GP does not think these would be helpful and again I have to arrange to have blood taken in London. After taking advice, I test my Homocysteine which is 18.7 umol/L. The laboritory interpretation was "Desired level up to 10umol/L, >15 may indicate increased risk of cardiovascular disease.
My GP now admits I am not absorbing and again is about to start b12 treatment when he receives a letter from the surgeon at the hospital, who removed my gall bladder two weeks ago, that he thinks I should see a haemotologist to identify why he thinks I have developed b12 deficiency. My GP again holds off starting treatment as this would effect tests which the haemotologist will carry out. I see him next week(26th of August).
Well Lisa, you did ask how I found it, and it's hard to explain without unfolding the whole story. I hope that Sod's Law does not have another bite at me, and that I keel over before my tests next week. I'll let you know how it goes.