Neuropathy????

[2kidsmom]

Hello,
I have written in the past & I am very thankful for your svc.
1st I was diagnosed w/ fibromyalgia, then dr thought ms.  I have had every test possible to rule out (all normal results)but still experience symptoms.  Recently I have a cervical & thorasic MRI...the results were a # of bulging disc,in both thor & cervical areas & slight narrowing of the spine in cervical area.  Because of this my neuro sent me to a neurosurgeon (Dr. Fred Simeone at the Univ of Penn)...he recommended a myelogram & spinal tap.  Had the tests performed but to no avail the results were normal saying that I didnt require surgery. My concern now is that I have some kind of neuropathy that is going undected.  Here is what I am experiencing currently:

Extreme weakness in legs & arms(ie;can't stand to shower need chair)Diffulty climbing stairs,rag doll feeling in arm&legs
when I place my feet on the floor in the morning they hurt eventhough I have no stood on them hardly at all the prior day.
Dizziness-lightheadedness
Dibilitating Fatigue
Occas.tingling in feet&arms
Incoordination
Doctor Simeone noted hyper reflexes
I cannot walk in a dark room...put me in a dark room & I have in the past had to sit down on floor it's like i can't see but I can-its weird
ringing in ears
now have gone on to develop TMJ(my above symptoms started before any of the tmj symptoms)stress related i'm sure!
Questions:
Spinal tap results showed protein leval at 72~just above normal
MS & Lymes were the ONLY tests performed with CSF
I've read some info on CIDP-could it be that?

I'm 34yr old female

[CCF-Neuro-M.D.-JT]

Glad that your workup to date has been normal.  It would be very, very unusual to have hyperreflexia with any type of peripheral neuropathy (PN), especially CIDP. Also, your spinal protein level is just above normal limits, but in CIDP it's usually higher.

However, if a PN is still suspected, an EMG would be helpful to establish the diagnosis and characterize its severity and pathophysiology. Finally, evoked potentials to look at the integrity of the pathway from the nerve in your foot or hand up thru the spinal cord to your brain may also be considered. Good luck.

[ANNE r]

tired all the time muscles fatigue easily

[Andrea`s_mommy]

Hi all! Does anyone know if birth control pills such as Ortho Tri-cyclen can contribute to neurological problems? I `ve had neurological problems for 8 1/s mos. now which started after my daughter was born. I started taking b-control shortly after that. But I recently stopped taking it do to high blood pressure. Since I`ve stopped, many of my problems have improved. Any other women have any problems like this? The neurologist hasn`t found anything yet with all of the tests I`ve had done, MRI`S etc. Thanks....

[graham]

Hi 2Kidsmom, you have just described me to a 'T'  I have every symptom you have in exactly the way you describe them.  I am not as bad as you in the dark although I have fallen once, head first, through my youngest son's bedroom door when returning from the loo with no lights on.  I nearly scared him to death, not to mention me.

I'm not sure, but I may have replied to your previous post, or there is someone else who has posted here with exactly the same symptoms as you and I.

I have been ill for over five years and it came as a relief that I was pensioned off a week ago, unfit to continue in my profession. At least that removed the financial pressures.

I have very strong suspicions that my condition, at least in part, is due to an untreated b12 deficiency.  The one problem on top of the ones you mentioned is that I have some form of inflamatory stomach/bowel problem which was identified back in 97, and I think this is effecting my ability to absorb normally.

Do you by chance have any history of stomach problems, and although you have had blood tests, do you know if they tested your vitamin b12 level.  Just as importantly, if they did, do you know what it was. There are people who are adversely affected by deficiency even although they are above the figure set at the lower end of normal.

In the UK, where I am, the lower end of normal is as low as 150 pg/ml (picograms/millilitre) in the US according to lab reports I have seen from there, it varies between 200 & 225 pg/ml.  The point is, and countless reports confirm this, that there is clear evidence that people can be effected well above that level, even to the extent of neurological damage. Some doctors think that if you do not have anaemia or large (megablastic) blood cells then you don't have a b12 problem, but this is definately not the case.

If your b12 levels were anywhere near the levels above then why not ask your doctor to repeat the test to see if it has declined. Have you had more than one b12 test and did the level go up or down when subsequently tested.  It has to be worth a try, even if it turns out not to be your problem.

I know how difficult it is to trundle on, year in year out, with unexplained, and in my case at least, worsening symptoms which make normal life impossible. I hope we both get answers to our problems one day.

Take care
Graham

[2kidsmom]

Hi Graham
I think that we have probably crossed paths in the past...glad I am in such good company.  I just wanted to write you and tell you thank you for writting...I know how hard it is when we feel the way we do!  Anyway to answer your questions~I don't suffer with any stomach problems...thankfully...but I am sorry to hear that you do.  I have never been checked for b12 levels, atleast not to my knowledge.  I have however questioned my doctors about it though and they said that it wasn't needed but now i am starting to wonder.  I am supposed to get more bloodwork done but I am too weak to get there=i am trying to get a lab tech to come to the home.  Maybe I will call my neuro and ask again if that is something to reconsider.  
Sorry to hear that you had to leave your work but atleast you can now concentrate on yourself and getting better perhaps.  I applied for Soc Sec but didn't get approved...they said not debilitated enough...can you believe that!  
Five years is a long time.  I am in year two with two small kids and that makes it extreamly difficult...My hope is that we all find answers so we can move on with our lives and lead it the way it was intended to be.
Thank you for writting, you know it makes me feel so not alone.
2kidsmom

[graham]

Hi again 2Kidsmom, it is disapointing that your doctors thought it not necessary to check your b12 level.  I would imagine they thought this because your other blood tests did not show evidence of anaemia or megablastic blood cells, which is also a form of aneamia.  This is a mistake, there is clear medical evidence that you can be suffering from a b12 deficiency, even as I said before to the extent of neurological damage, without having haemotological changes. This is why this condition often goes undetected untill people get very ill.

I obviously cannot say that your problems are due to b12 deficiency, but what I can say is that all the symptoms you have can be caused by having this condition.

I'm glad you don't have stomach problems, as I do, but this is only one reason as to why someone could develop deficiency. To name a few it can be caused by bacterial overgrowth, lack of a substance in the stomach called intrinsic factor, pancriatic insufficiency, celiac disease and many other causes.

I think it is very important that they at least check your serum b12 level. I think they should also consider checking your methylmalonic acid and homocysteine levels, as they can be very good indicators of actual b12 deficiency before your serum b12 level would necessarily drop into the laboritory deficient range.

The serum b12 test records both active b12, which the body uses, and analogue b12, which it cannot. That is why some think it useful to check serum holotranscobalamin II, which eliminates the problem of analogue b12 in the count.

Fingers crossed that there just might just be a treatable answer to your problems.

Best of luck
Graham

[barbaralou]

I think Graham is right you sound like you have a vitamin B12 deficiency. It can;t be detected through a simple blood test. I thought I was going to die until I started taking sublingual B12. It takes a while to work but three months later I feel so much better. I had the same symptoms as you.  Try to find info on B12 deficiency, it is amazing how it affects the body.

[Mysterious Stranger]

This is for the many posters on this board who report variations of peripheral neuropathy and MS-like symptoms, especially the many who are frustrated that conventional medical testing and workups have left you without solutions, or even diagnoses.
     In people who report sensory and/or motor disturbances, tingling, numbness, and other unusual sensations in BOTH upper and lower extremities, and/or the face, the cause is most likely not a localized lesion, nerve root entrapment, or other focal problem. These types of complaints smack of a systemic problem, one attacking the body's entire nervous system and possibly the cardiovascular system as well. Environmental exposures, namely chemicals should be suspected, especially when there is a history of such exposures.
For at least some of you folks with these types of symptoms, I would strongly suggest you ask yourself whether you consume aspartame in your food. I would bet that many of you use diet products, especially "sugar-free" lines of products containing the now ubiquitous aspartame artificial sweetener (sold as "Equal" and "Nutrasweet"). The two amino acids making up 90 percent of aspartame are neurotoxins/excitotoxins in large enough doses, which themselves can cause problems with the nervous system. But the most harmful constituent of aspartame may be the 10 percent of the product that binds the two amino acids together -- methanol (wood alcohol). That substance breaks down in the body into first formaldehyde (used in embalming) and then formic acid (the poison in ant stings).
Methanol is a powerful neurotoxin, one that may slowly be pickling your nervous system. The damage may be permanent, but you can at least halt the progression of methanol poisoning by halting your intake of the poison. There are, on the other hand, many instances of people having improvement in their symptoms upon eliminating aspartame from their diets.
I certainly understand anyone being skeptical that aspartame is the cause of their problems, but there is an easy way to prove this suggestion wrong. Simply eliminate ALL aspartame from your diet for 60 days, and see if your symptoms improve. If you need artificial sweeteners in your life, there are at least four or five others that are available.
Many of you have expressed great frustration at the inability of the medical profession to even identify the cause of your problems, let alone treat your illnesses. What do you have to lose by trying my suggestion?

[southern belle]

My first time on this forum..was searching on more info for B12 deficiency. I was diagnosed 5 weeks ago with B12 deficiency neuropathy. On hindsight was having symptoms for approx 3 years before got to the point it did. The starting symptoms are so mild most ppl like myself put it down to working long hours , family..age and a host of other reasons. Starting symptoms tired all the time, heartburn frequently, nausea. Two months before acute symptoms showed up had periods of dizziness with one episode of fainting.One week prior to acute symptoms felt like I was walking on rubber floor or pillows..kind of laughed about it at the time.Two days before going to doctor noticed numbness of both hands and feet...thought i slept funny plus had been having shoulder and low back pain prior so thought that was why.On the day of acute symptoms got up for work unable to walk properly..still thought from sleeping funny..then when got to work could not write hardly at all. Neurologist did a whole bunch of tests..all negative except B12 lev was near 200 but above 200..dont recall exact number. Now taking b12 shots but wondering when to expect relief of some symptoms. Still abnormal gait and numbness in hands and feet..must hands and feet very cold to touch..heat helps but inconvient.

[graham]

Hi Southern Belle, I'm sorry you have been unwell but glad that you have now been diagnosed with b12 deficiency and can receive the proper treatment.

I'm in the UK and have had b12 levels regularly below 200pg/ml (197,192 x2 & 189) over the past five years. I had a Schilling test to measure my absorption of b12, which was within normal limits although at the lower end of normal. I was injected with b12 twice for the test and three months later my b12 level was 287pg/ml. Without any further injections, seven months later my level was down 52 at 235pg/ml.    

Although I have pointed out to my doctor, and consultants I have seen, that it is possible to have a problem at this level, even without haematological abnormalities such as anaemia and megablastic (enlarged) blood cells, they just won't consider it. I have even shown them medical studies by doctors who specialise in the field, which were sent to me from people in the US who think it is likely that this is my problem.

It is now well over a year since I was last tested but when I mention the subject I am told that my levels are normal and that my neurological symptoms are a side issue of my diagnosis, which is Chronic Fatigue Syndrome.

In addition to my fatigue stomach problems and neurological symptoms I now have constant tinnitus and have developed hearing loss. After recent tests at hospital, the ENT doctors have written to my GP asking for a new neurological opinion. They clearly think that CFS does not explain my symptoms and neither do I.

You are fortunate that your doctor is aware of the problems at your level, many people suffer worsening neurological damage until there problem is identified at lower levels, I know as I have read too many horror stories.

You mentioned you are searching for more info on b12 deficiency, I have given about as much info as I can in a couple of replies above. Have your doctors managed to identify the cause of your deficiency, whatever it happens to be it will also need to be addressed. I noted that you mention heartburn problems, I don't know if that could be significant, what does your doctor say?

I use the google search engine, and any search with "b12 deficiency", and other variations, will bring up many reports by both doctors and nutritionists. You could also check out the site attached to Massachusetts General Hosital under www.braintalk.org  On the Peripheral Neuropathy forum you will find lots of well researched info on b12 deficiency (read Rose's b12 background information)

I have read that some people take a while before they feel improvement as the body tries to repair damage which has been done over a period of time, sometimes a lengthy perod. I hope that you start to feel better soon.

Best of luck
Graham

[southern belle]

Found a site yesterday that had listed a foundation ..cant recall actual name but had to do with Vitb12 deficiency. I emailed contact person listed that replied promptly. She was very helpful and informative..below is her name and email (business one not a private email)
Susan L Rump
E-mail Address(es):
  Susan.L.***@****

Maybe she can give you a source nearby you to seek help since your doctor is not giving serious consideration to your needs. The way I look at it..VitB12 injections cheap and you can not overdose on B12 so where is the harm for him to try except his ego.

[Mysterious Stranger]

southern belle, do you consume aspartame in your diet?  If so, I would be interested to know how many diet sodas and other products artificially sweetened with aspartame you have consumed in recent months.

[southern belle]

Only aspartane that I knowingly consumed was in a pack of trident gum . I have always used sweet and low for my ice tea but I dont think it contains aspartane.

[kim4]

When you had your spinal tap were your cerebrospinal fluid pressures within normal limits??

[2kidsmom]

My csf pressures are not listed on my test results so therefore I do not know...I am curious as to why you are questioning it....I have no idea what the csf pressure would mean...all the information that I have obtained is CSF glucose: 72
                                    CSF protein: 26
and that it states there no oligo bands were found. BF appearence is clear and colorless.   I thank you for writing I would love to hear back to see what the pressures are all about.
thanks
Linda

[southern belle]

Well some good news atleast. I have short term disability insurance...when it was known would be awhile atleast till I hopefully recover from B12 neuropathy ...I submitted for my benefits. I totally expected to have a fight on my hands because of the unusual nature of the diagnosis of B12 neuropathy. This particular company has history of questioning and prolonging almost all claims. Can you believe they accepted it on first submission? Was a pleasant surprise to me. Goes to show though that they are aware of the sometimes very serious problems associated with this. Now we can only hope doctors all over will too. Since my diagnosis doctors that i use to work with ( i am a nurse btw) have researched the topic and are now actively testing ppl with even close to the symptoms. For all of them it was the first case this severe they had ever seen. My coworkers..friends and family members now have included it in their routine physicals..so if nothing else maybe my case will protect some from the same condition I am now living with. I would like to see more information to the public but not likely as a lot of doctors dont like to admit how valuble vitamins can be..they prefer balanced diet but in my case balanced diet did not help. I did not absorb so even had i taken over the counter b12 it would not have helped...plus diet contained b12 rich foods. Granted I live in a rural area so doctors in more urban areas may be more inclined to admit vitamins do play important role other than iron and calcium.

[southern belle]

Seems new problem starting. Started Saturday with breathing trouble. Felt like I couldnt take a deep breath. Pressure in my chest at the sternum. Borrowed my mothers nebulizer and took some breathing treatments. Had some trouble with it from beginning but episodes always lasted only a minute. Saturday lasted awhile. The breathing treatment didnt help much. Since I have not been coughing I am thinking has more to do with my stomach as have been having lots indigestion. My question is tho..is there any problem with breathing with b12 deficiency or is this unrelated?

[barbaralou]

I had breathing problems also associated with a lack of B complex.

[azurerain]

Dear 2kidsmom,

I've had symptoms very similar to yours and mine are apparently caused by cervical (C5-6) disease. Since you mention a number of bulging discs it sounds like this could be it. I don't really think you need to look further.

The main culprit is not so much the bulging discs themselves, but the inflammation that develops around them. For example, I notice that I can frequently do strenuous activity, and then 1-5 hours later I will become extremely ill (numbness, tingling, feeling like I have the flu, and essentially all of the symptoms you outlined in your first post). I have had this delayed reaction occur as late as 48 hours after the "insult". I then continue to worsen for 5-10 days and then get better over about another 1-2 weeks. Until I do something again. I can't even walk up one flight of stairs without developing symptoms.


My right foot is essentially permanently numb and now both my hands are constantly numb in the C6 nerve distribution.

(In case anyone is wondering, I never consume aspartame or any other artificial sweeteners and my B12 is fine.)

My first MRI was reported as normal, but my recent MRI showed the C5-6 disc with possible spinal cord compression.

Hang in there and I would check with another neurosurgeon, and maybe have your MRIs repeated if your condition has worsened.

[azurerain]

My physical therapist gave this analogy:

The bulging or herniated disc is like a pebble in your shoe. It can be quite small but if it rubs on you constantly it can cause a serious problem. And this problem can involve your entire spinal cord for quite a distance from that disc due to inflammation.

I've had one neurologist and my physical therapist say that my disc is likely the cause of my problems and another neurologist and a neurosurgeon say not. So the vote is 2 against 2 right now. I'm seeing another neurosurgeon this week.

Some seem very dogmatic, others are more open to listening and thinking.

The disc is the ONLY documented abnormality that has been found in 3-1/2 years of testing. I have been tested for everything that I've seen mentioned in these forums and I'm "perfectly healthy" except that I'm not.

[Freddd]

Your symtoms are that of severe vitamin methylcobalamin deficiency (methylB12, the active form).  Ataxic gait in the dark is a sure tipoff.  Bilateral neuropathies are a tipoff.  All of your many symtoms fit into the picture.  I had them too.  You can test this hypothesis for $8 at a healthfood store.  I knew 15 minutes after putting the methylB12 under my tongue that I was having a progound change.  Abnormal severe fatigue and lifelong depression lifted in 1 hour flat.  I had FMS and the severe fatigue since acute onset in 1987.  It's gone now, 6 weeks after starting B12 I feel the best in my life in many ways.

[2kidsmom]

fredd,
thank you for writing.  I am going to try that...it sounds cheap enough...i have never heard of that type of b12...i do take a liquid form of b12 and have in the past taken 1000 to 2000 mg of sublingual b12.....for months but felt no relief....do you know if that is the same thing that you describe?  If it's that simple I would be so relieved.  I am glad to hear that you are feeling better...there is hope after all.
Thanks

[southern belle]

Well have been taking B12 shots for bout 7 weeks. I feel no better and if nothing else feel like I am getting weaker. Have fallen twice in last few days from my legs just getting weaker. I started receiving 1cc B12 IM every week for 4 weeks and now receive same amt once month. I would of thought would of seen some sign by now of improvement...getting discouraged and scared again. The stiffness and pain in my neck and shoulders still there but am guessing its from really having to use them to help balance myself in all situations anymore. I am also getting my ego battered from ppl in general public giving me scornful looks as I am sure they think I am drunk by my walk.Soon my short term disability will run out and yet cant sign for ssi until disabled for a year. Can sign up earlier if permanent disability diagnosed but doctors saying not sure if will be permanent or not..geezzz.

[Freddd]

To answer two questions at once, most injectable B12 in the USA ia CYANOCOBALAMIN and nost liquid sublingual B12 is CYANOCOBALAMIN.  It is only METHYLCOBALAMIN if it is specified as such on the label, so it probably isn't.

I had been taking loads of cyano (1000mcg a day, and it barely did anything.  When I took the methylcobalamin my consciousness started changing profoundly after 15 minutes.  Best of luck for both of you.  My guess is that one or both of you will will have a significant change like most folks I know in person who have tried it.  It seems like almost everybody I know these days has some sort of neurological mystery going on from CFS and FMS to PN and depression.   Good luck.

[2kidsmom]

Hello and thanks for writing back...just one more question and I'll leave you alone...i promise!
My husband went and purchased the methyl b12 and I will try it  as soon as I can achieve some more information....I think the one he bought is an excellent brand also with folic acid and ascorbic acid....the mcg is 3000...directions state to take 4 - 7 sublinguals a week...I am wondering if you or anyone takes such a large dose....I am used to the 1000 mcg of regular b12 sublingual and this just seems like so much more
Thanks for any information....i am excited to see if this will help....thanks again!
Linda

[Freddd]

If the label says "methylcobalamin" that's what it should say.  I take several of the 1mg each day.  

I discovered this past two weeks, as of 2 days ago, that all brands are not created equal. I soared for 4 weeks.  I changed brand.  Two weeks later I noticed that all my symtoms had been creeping back.  I had suspected from the 2nd or 3rd day.  By two weeks the thick sticky mucuc had retyrned and the last streaw was the fatigue coming back.  I went out the next morning and got another bottle of Enzymatic Therapy Bioactive B12.  It worked like a charm just like the first time.  The brand that didn't work and allowed the symtoms to come back was Source Naturals 5000mcg methycobalamin.  I have no idea why.  This was confirmed by by daughter's BF.  His migraines, fatigue and other symtoms returned too.  Even after a month of the good stuff, my situation was fragile enough that a few days of a less effective vitamin brought return of symtoms.  Good luck.

[Jande]

Hi,

There is a lot of problem solving here. Did you have any vaccines before the onset?  Your symptoms are very much like mine, which started immediately after a tetanus shot over 2 years ago.  I tried B-12 to regenerate the nerves and my hands folded back the next day.  I believe it is due to the aluminum salts in the shot because it is also in tetanus vaccines.  Sublingual B-12 is better.  

There are a lot of PN cases from vaccines--it is one of those hidden mysteries the medical community perfers not to believe.  Currently, I take Neurontin, but I think the Motrin and Tylenol provide the most immediate pain relief.  I continue to stagger and be weak, exhausted, and cannot do to much.  My life was radically changed, but I know the source was the tetanus shot.  Think about any flu shot etc. that you may have received before you started to hurt.  

Thanks,
...jan....

[GFG]

I have had Bell's Palsy for three months and have just learned about using the methylcobolamin form of B12 to speed nerve regeneration. So far there has been no sign of improvement. Has anyone had any experience with this?

[Freddd]

There are hundreds of posts about methylb12 over at braintalk on the bells palsy forum.  ALso as I am discovering not all brands are created equal.  So far one brand works well and the other one I've tried doesn't and symtoms came back as if I wasn't taking any. This applies to some others too. Apparently the brand of methylB12 is of major importance in repeatability of results.

[Freddd]

Hi Jande,

I have had repeated apparent B12 deficiency crisis' since before the age of two.  That one was triggered by breaking my collerbone by riding my tryke down the basement stairs. I stopped speaking understandibly for 4+ years among other things. I had them triggered by vacinations, by colds, by strep, by just about any stressor.  Maybe those vaccines were contributary stressors keeping me in crisis for so long.   I had repeated streps after that for 20 years.

In the early winter of 1987, I had a severe flulike illness that was "going around".  Everybody that got it got severe headaches and stiff necks.  The local doc who NEVER prescibed codeine if she could help it was offerring it for the pain.  I never got better from that. The severe muscle pain and severe fatigue never got better.  They lingered for years and years.  They went away on May 21, 2003, 1 hour after I put that methylcobalamin in my mouth.  I have no idea if I had been vaccinated around that time.  Highly unlikely.  Hopefully the methylb12 can help you heal the neurological damage.   Good luck.

[riceneuroni]

Hi,

CGF, have you looked into the amount of Methyl B12 needed to regenerate damaged nerves? You didn't mention how much you're taking. I've read the regenerative level is around 40mg per day.

It is a wonderful, moderated site available for discussing medical concerns with other patients and friends. It is not a doctor/answer site like this one, though.