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Somewhat Difficult Case
In short: after 46 years of robust good health on June 15, 2002 I started to feel unwell. First diagnosed as prostatitis the symptoms quickly spread to tingling hands and right foot followed by numbness. My PCP sent me to a neurologist who found very low B12 and very high homocysteine (now under control). Normal neurology exam but there was great (subjective) pain. Ordered MRIs which were nromal and a spinal tap which was normal except for a slightly elevated CSF protein at 62. EMG tests were also essentially normal as was amyloidosis.
However, the tingling and numbness have subsided somewhat to be replaced only by what I can describe as bone ache (it's not muscle, it's not joints), sometimes pain in the 2-3 out of 10 range
The pain is slowly increasing and now, after 5 months, I would say that I have had about five good days
The neurologist is taking a 'wait and see' attitude, even as I appear to be progressing. He has spread broad hints about my being a nutcase but I (at least) find that unlikely, as I have never reported any sickness before (low stress too). He IS starting to see slightly changed reflexes from me which is says are not significant.
The upshot is that, like so many others. The Doctor denies my needing a second opinion and he refuses to order any additional tests now. Do you have any advice? Should I wait and see or insist upon a second opinion? I don
However, the tingling and numbness have subsided somewhat to be replaced only by what I can describe as bone ache (it's not muscle, it's not joints), sometimes pain in the 2-3 out of 10 range
The pain is slowly increasing and now, after 5 months, I would say that I have had about five good days
The neurologist is taking a 'wait and see' attitude, even as I appear to be progressing. He has spread broad hints about my being a nutcase but I (at least) find that unlikely, as I have never reported any sickness before (low stress too). He IS starting to see slightly changed reflexes from me which is says are not significant.
The upshot is that, like so many others. The Doctor denies my needing a second opinion and he refuses to order any additional tests now. Do you have any advice? Should I wait and see or insist upon a second opinion? I don
Hi M hotchickenpaste, nice touch with the name.
From the articles I have read and the advice I was given, there is nothing "borderline" about your b12, it is low !!!
Articles have been warning for years about the problems of people suffering neurological damage long before their serum b12 levels dropped below the lower end of normal, which in the US is about 200pg/ml or slightly higher (her in the UK it is unfortunately lower). Many studies show people damaged well in excess of 300pg/ml. This is not my opinion, this is recorded in studies by specialists in this field. Low B12 and high homocysteine together with neurological symptoms is exactly what would be looked for to diagnose this problem.
What has your b12 risen to now ? The fact that your homocystein has decreased since b12 treatment only goes to show what the problem, or at least one of your problems, was.
I agree with pokey, I think that further MRI's would be worthwhile. If it is the case you have developed sub acute combined degeneration of the spinal cord, then an MRI which shows the lateral and posterior columns of the spinal cord, may well be able to show signs of deterioration which would help your diagnosis.
You mentioned that your symptoms have got worse in recent weeks. I have read, from people who are recovering from this condition, and who are extremely knowledgable about it's effects, that once treatment has started, there can be dips as the body starts to recover. If you wish more info on this I would advise you to check out Braintalk.org (associated with Massachusetts general Hospital) and direct your case towards Rose on the Peripheral Neuropathy Forum. I hope your doctors are prepared to listen, many are not.
Good luck
Graham
From the articles I have read and the advice I was given, there is nothing "borderline" about your b12, it is low !!!
Articles have been warning for years about the problems of people suffering neurological damage long before their serum b12 levels dropped below the lower end of normal, which in the US is about 200pg/ml or slightly higher (her in the UK it is unfortunately lower). Many studies show people damaged well in excess of 300pg/ml. This is not my opinion, this is recorded in studies by specialists in this field. Low B12 and high homocysteine together with neurological symptoms is exactly what would be looked for to diagnose this problem.
What has your b12 risen to now ? The fact that your homocystein has decreased since b12 treatment only goes to show what the problem, or at least one of your problems, was.
I agree with pokey, I think that further MRI's would be worthwhile. If it is the case you have developed sub acute combined degeneration of the spinal cord, then an MRI which shows the lateral and posterior columns of the spinal cord, may well be able to show signs of deterioration which would help your diagnosis.
You mentioned that your symptoms have got worse in recent weeks. I have read, from people who are recovering from this condition, and who are extremely knowledgable about it's effects, that once treatment has started, there can be dips as the body starts to recover. If you wish more info on this I would advise you to check out Braintalk.org (associated with Massachusetts general Hospital) and direct your case towards Rose on the Peripheral Neuropathy Forum. I hope your doctors are prepared to listen, many are not.
Good luck
Graham
Malvolio Hotchickenpaste -- the secret.
Years and years ago I read an article in a magazine about a writer who filled out response cards, etc., with names like "The Pope" and "Malvolio Hotchickenpaste." He then got junk mail addressed to these people ("Dear Mr. The Pope, I have a deal for you!").
As it happens, this is quite a fun and effective way of telling who's selling your name. It works pretty well for spam too. I now use M Hothchickenpaste or the names of my cats for everything--they are probably the only cats in my neighbourhood who receive Forbes! They get applications for credit cards, etc. too.
Years and years ago I read an article in a magazine about a writer who filled out response cards, etc., with names like "The Pope" and "Malvolio Hotchickenpaste." He then got junk mail addressed to these people ("Dear Mr. The Pope, I have a deal for you!").
As it happens, this is quite a fun and effective way of telling who's selling your name. It works pretty well for spam too. I now use M Hothchickenpaste or the names of my cats for everything--they are probably the only cats in my neighbourhood who receive Forbes! They get applications for credit cards, etc. too.
Not going to ask about the name!
If I were in your shoes, I would get a second opinion. It can't hurt, and your primary or neurologist should not take offense in this. Its your right to do so.
I do know that B12 can cause neurological symptoms and that they can be permanent in long standing cases. Maybe now that you have been receiving treatment for it, it will help to improve symptoms, it sounds like it is a little, but not the pain.
Atleast your MRI's have been normal - so far. I bet they were checking for MS too. As a patient that has been there, done that, I'd have to say your Doctor is right about the problems your experiencing are in the cervical region. Thoracic and lumbar area's that may be affected with anything would cause symptoms in area's below any damage/pathology (herniated discs, etc). One thing I don't agree with is that lumbar MRI's aren't good, that isn't true. They are more diagnostic than X-rays or CT scans. I don't know this for sure, but I think if you did have a AV fistula in the cervical spine and your MRI was done with contrast it would of picked up the extra vessels filling. I would be interested to know if it would. That is a good question for the Doctor to answer! Both myelograms and angiograms are excellent for seeing things like that. Ask the Doctor ordering it which one would he have one of his/her family members get. What are the pro's and con's for each one?
I hope you let us know what is decided. Good luck!
Pokey
If I were in your shoes, I would get a second opinion. It can't hurt, and your primary or neurologist should not take offense in this. Its your right to do so.
I do know that B12 can cause neurological symptoms and that they can be permanent in long standing cases. Maybe now that you have been receiving treatment for it, it will help to improve symptoms, it sounds like it is a little, but not the pain.
Atleast your MRI's have been normal - so far. I bet they were checking for MS too. As a patient that has been there, done that, I'd have to say your Doctor is right about the problems your experiencing are in the cervical region. Thoracic and lumbar area's that may be affected with anything would cause symptoms in area's below any damage/pathology (herniated discs, etc). One thing I don't agree with is that lumbar MRI's aren't good, that isn't true. They are more diagnostic than X-rays or CT scans. I don't know this for sure, but I think if you did have a AV fistula in the cervical spine and your MRI was done with contrast it would of picked up the extra vessels filling. I would be interested to know if it would. That is a good question for the Doctor to answer! Both myelograms and angiograms are excellent for seeing things like that. Ask the Doctor ordering it which one would he have one of his/her family members get. What are the pro's and con's for each one?
I hope you let us know what is decided. Good luck!
Pokey
Dear Hotchickenpaste,
What a frustrating situation. I have a couple of thoughts, none of which are meant to be a diagnosis, but just some points I wanted to add.
As someone who has had a spinal tumor, I have become very wary of what it really means when one has a "normal MRI." One of the consistent sources of error in diagnosing spinal cord and nervous system disorders has been that MRI's are done, but they're not done of the right place. So just being told one has a normal MRI is not enough by itself to rule out visible CNS problems
What a frustrating situation. I have a couple of thoughts, none of which are meant to be a diagnosis, but just some points I wanted to add.
As someone who has had a spinal tumor, I have become very wary of what it really means when one has a "normal MRI." One of the consistent sources of error in diagnosing spinal cord and nervous system disorders has been that MRI's are done, but they're not done of the right place. So just being told one has a normal MRI is not enough by itself to rule out visible CNS problems
Thanks for your thoughts.
I had a cervical MRI and a brain MRI, both w/o contrast. The Neurologist refuses to order a lumbar MRI--he says (a) with both hands and feet affected the area under question has to be cervical and (b) lumbar MRI pictures aren't any good anyway.
I am being treated for the B12 and my B12 has gone up (it was about 180, i.e., borderline) and the homocysteine down but the symptoms have slowly increased, not abated. I don
I had a cervical MRI and a brain MRI, both w/o contrast. The Neurologist refuses to order a lumbar MRI--he says (a) with both hands and feet affected the area under question has to be cervical and (b) lumbar MRI pictures aren't any good anyway.
I am being treated for the B12 and my B12 has gone up (it was about 180, i.e., borderline) and the homocysteine down but the symptoms have slowly increased, not abated. I don
Dear Hotchickenpaste,
Just an additional note to clarify that the examples I mentioned above weren't to say that I thought you had either a spinal cord tumor or celiac sprue, but just to pass on my own experience with difficult neurological diagnoses.
Take care,
Annika
Just an additional note to clarify that the examples I mentioned above weren't to say that I thought you had either a spinal cord tumor or celiac sprue, but just to pass on my own experience with difficult neurological diagnoses.
Take care,
Annika
Sorry you are not keeping well and getting very little help from your doctor.
I don't understand though, you said your neurologist had identified that you had a low b12 level and elevated homocystein. What do they think your symptoms are going to be ??, exactly as they are I would suggest How low was your b12 and did they carry out tests to find why your b12 is low. Do you have pernicious anaemia for instance ?
There are a number of reasons for malabsorption of b12 and investigation should be made to ascertain why.
Are you being treated for b12 deficiency, you did not mention. If not they should start right away. You mentioned changes were noted in your reflexes, were these in the ankle area, which again is classic for untreated b12 deficiency. I don't know how low your levels were or for how long they were in an area which was causing you damage. If untreated you can develop a condition in the spinal columns called sub-acute combined degeneration of the spinal cord. This condition can improve with b12 treatment but the longer it goes untreated, the worse it gets.
You need answers from your doctor now, he seems to have a very poor understanding of this condition. Unfortunately this is not uncommon as many doctors are well behind the current studies into this problem and many people have suffered as a result.
Best of luck
Graham
I don't understand though, you said your neurologist had identified that you had a low b12 level and elevated homocystein. What do they think your symptoms are going to be ??, exactly as they are I would suggest How low was your b12 and did they carry out tests to find why your b12 is low. Do you have pernicious anaemia for instance ?
There are a number of reasons for malabsorption of b12 and investigation should be made to ascertain why.
Are you being treated for b12 deficiency, you did not mention. If not they should start right away. You mentioned changes were noted in your reflexes, were these in the ankle area, which again is classic for untreated b12 deficiency. I don't know how low your levels were or for how long they were in an area which was causing you damage. If untreated you can develop a condition in the spinal columns called sub-acute combined degeneration of the spinal cord. This condition can improve with b12 treatment but the longer it goes untreated, the worse it gets.
You need answers from your doctor now, he seems to have a very poor understanding of this condition. Unfortunately this is not uncommon as many doctors are well behind the current studies into this problem and many people have suffered as a result.
Best of luck
Graham
B12 deficiency can sometimes affect the pain nerve fibers in the spinal cord, which may be a cause of your symptoms. ANother thought is that there may be a primary bone problem which can be evaluated with tests such as a bone scan. The extensive diagnostic testing that has come back normal is somewhat reassuring that nothing serious is going on from a neurological point of view, although the pain sounds quite debilitating. If it is truly affecting your life, talk to your PCP and let him/her know that you're concerned that something is going on. The course of management may need to be redirected. With the normal neurological exam and testing, it's very possible that this does not represent a primary neurological problem. In the meantime, consider seeing a pain specialist to help you deal with the symptoms until you can find the underlying problem and receive the appropriate treatment.
I should add that I weighed 132lbs (I am 5'5", bery lean and always have been) but have lost 9 lbs in five months (I am now at 123 lbs) although (I think) I eat well.
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