neuropathy due to pernicious anemia

[tjmorrell]

Hi, I am a 36yr old female-approx 1yr ago, I noticed tingling in my feet, then legs, followed by burning and shooting pains.  My hands and arms became involved soon after-one morning after having severe pain in my legs overnight, I woke to find my lower left leg numb.  It lasted approx 6hrs-shortly after, I started having tingling in my face and lips, then pain.  I was extremely tired and had lost my appetite, therefore lost weight (approx 30lbs in 6months).  In Sept 06, I had blood tests, which showed my B12 was 101.  I had Shillings test which showed pernicious anemia.  In Nov 06, after having a series of 5 weekly B12 shots, the left side of my face went numb, I couldn't squeeze with my left hand, and couldn't feel pinprick on my left foot, also had absent reflexes.  I had began to notice that while I had shooting pains in both arms and legs, (and a lot of twitches), it was much worse in my left leg-some days almost constant burning  I began having trouble walking upstairs sometimes, and felt like I was dragging my left leg, also left hand lost strength sometimes. (not always, it came and went).  I had ringing in my ears often, lost control of my bladder once, and my skin began to "hurt" when anything rubbed against my legs.  I also began to feel that my toes felt "wet" when they weren't, and at times like something was running down my leg).  Also, the left side of my lower back had began to hurt.  I was very dizzy upon standing, quickly or slowly.  I have had blood tests to exclude Celiac, Lyme and heavy metal poisoning-had MRI of my head, NCV (no EMG), spinal tap, upper GI series, xray and CT of my chest, and ultrasound of abdomen which were all normal.
It has been almost 10 months since I began having B12 shots (I have them monthly). My weight has leveled off (I have gained approx 5lbs), I feel a lot less tired, but still have extreme burning pain in my left leg, and shooting pains in both arms and legs, and most of the symptoms listed above.  (I am on 600mg Neurontin twice daily, and frequently take morphine for pain). I was diagnosed with Subacute combined degeneration (and small fiber neuropathy) from pernicious anemia.  I am waiting for an MRI of my spine.  My question-I have read that my recovery may be incomplete or the damage may be permanent.  The neurologist said that it could take up to 2yrs to recover-in your experience, could it be something else (MS), or is there a time frame for recovery?  I have read conflicting information, and just want to have an idea of what my future holds.  I am left unable to work, and have 2 small children to take care of-it is very difficult on days when I have a lot of pain.
Thanks for your time.  
tjmorrell

[KJS1963]

Hi TJ, I am a 44 year old white female who has just recently been diagnosed with b12 def and iron, the usual blood tests, chest xray, colonoscopy, upper Gi, and MRI and MRA all show nothing, no  reason for the defiency, GI doc is running alot more tests now again to check for crohns.....I have all the symptons you have described, plus alot of GI problems,,,,,,,diarrhea, pain in abdomin, cramps constanly, so originally they said I had crohns or something like it and that caused the b12 and iron def, so far however they cant find anything, and the GI doc doesnt think b12 def is the cause of the pain in my feet legs hips, hands ect........he said that numbness and tingling are the cause of b12 but not the sharp pains, I have had many falls this past year alone, my knees are always swollen and bruised, recently I had a fall and hit my head and my right hip and leg got all bruised up, when I complain to the GI doc, he says he doesnt know but is still running tests....my primary phys says that b12 shots I am getting will help in about three months or so and left it at that......in the mean time I am getting worse not better,. I am having more falls, more pain and numbness, I do have the sensation that my leg is wet like I wet myself but then I check and theres nothing, you are the first person I heard describe that paticular symptom and actually reading your comments made me feel better cause I was starting to think I was loosing my mind here  {my primary phys says bouts of confusion, depression are very normal with bad anemias}  Anyhow while I am still in the process of doing tests ordered from the GI Doc, he told me to get to a neurologist soon, then he also told me if he cant find anything that I had to see a hemotologist?  after reading about these neuropathys, I am thinking that sounds exactly like what I have, except the bowel problems which the GI doc isnt sure about.  Do you suffer from crohn like symptoms also?   I  too worry that they are missing something big here and it might be like MS or something that needs to be diagnosed and treatment started for immediatley.  So I have been diagnosed with b12 and iron def [the iron has been a life long def} I have had a radical hysterctomy so I have no mentrual bleeding, I have hypothyroidism which I have been treated for for about 5 years, I had problems swallowing, which GI doc said he couldnt find reason for during the upper Gi scope, abdominal problems, bowel problems now all these weird neurological problems which are not getting better after 6 weeks of b12 shots, I have bad RLSand take requip for that and that medicine has nasty side affects, I take Donnatal for IBS/crohns like symptoms wich makes me extremely tired, everything they give me makes me tired which was my very first symptoms years ago, the tiredness and weakness is horrible. I have a  18 month little girl I have adopted, now my symptoms are so bad its really hard taking care of her, my other children are older so I'm here alone with my little girl and the Docs cant find whats wrong and fix it, I am soo frustrated. My most recent symptoms are confusion and speech, my right hand has alot of numbness and I am right handed so its hard to sign my name or write out a check. Anyhow I am going to the neurologist to see whats up, any new info I can find I will post for you, good luck,
Kelly

[GrandeeRN]

I am a 58 y.o.  RN with pernicious anemia, vitamin B12 deficiency.  First symptoms were tingling in feet then hands.  B12 level was 200 and I was treated with injections.  My primary MD was treating me but did not run enough blood tests for definitive diagnosis so I decided to see a hematologist.  With history of Hashimoto's thyroidits (Hypothyroidism) I was told PA and other auto immune disorders go hand in hand with Hashimoto's.  Sure enough, my bloodwork showed antibodies for parietal cells (anti-parietal cell antibodies) which is autoimmune disease for PA.  My body is killing the good parietal cells in my stomach, therefore not allowing B12 rich food to be metabolized.  Now my B12 blood level is 800 but neuropathy remains, although somewhat improved. I was told by hematologist from Johns Hopkins to watch out for other autoimmune disease and symptoms such as Lupus, Rheumatoid Athritis, etc...  Taking B12 injections monthly and supplements which dissolve under my tongue daily.  

[ahoskrn]

Get yourself a copy ( on Amazon.com) or from your library of "Could it Be B12?" by Sally Pacholok. It is a wealth of info about how to help correct the neuro damage caused by B12 and how it is an epidemic of misdiagnosis today!
Hope this helps!
Angela

[gbboy]

Did you get the MRI on your spine? Has the doc rechecked your b12 level or agreed to to give you more frequent b12 shots? Hope things are going well.

[tjmorrell]

thanks for your comments-it makes me feel a little less alone and more hopeful to hear of others' experiences.  I'm wondering if maybe I should ask for more frequent shots, because I don't seem to be getting better, and it's been awhile now.

[gbboy]

Recent B12 diagnosis myself. Been getting the shots since April. Slowly things are improving for me. For me the fatigue and cognative issues cleared up first. But I can tell that the b12 is not high enough yet because I am tired again and the numbness is coming back. Another round of weekly shots for me. The neurologist said that depending on how long the def. has been occuring and how much damage has occured will determine the recovery time and if there are long term effects. I probably will be left with a odd sensation in one leg. There is another person who has posted on these forums that has some more significant damage from the b12 def. Use the search function and search for b12 and you'll find that persons comments. They were made sometime this month but I can't remember on which forum. Good luck and keep hope. Things will get better.
B