Hi, I am a 36yr old female-15mnths ago, started having pins and needles in feet, then burning in legs then hands and arms, loss of appetite, fatigue-July 06, lower left leg numb for 6hrs. Sept'06, blood tests showed B12 at 101. Shillings test showed Pernicious Anemia. Nov 06, lost feeling in left side of face, couldn't squeeze with left hand and couldn't feel pinprick on left foot, also reflexes absent. At times, I lose strength in left leg and can't move left hand/arm very well. Have pain in face, mostly left side. Also, have feeling like my toes and legs are "wet" when they're not. (and sometimes like water running down my leg). I lost control of my bladder once, and skin "hurts". Also, get dizzy when standing up. Had MRI of my head, CT of chest, xray of back and left leg, ultrasound of abdomen, blood tests to rule out Celiac, Lyme, heavy metal poisoning, upper GI series, NCV, all normal. May 07, neurologist diagnosed subacute combined degeneration of spinal cord, but wants MRI of spine. I had symptoms for at least 6mnths before treatment (1 shot/wk for 5 wks, then mnthly). It's been 10mnths since I began shots, and still have burning pain in left leg. I am on 600mg Neurontin 2x daily, and take morphine for the pain (tried Lyrica but couldn't tolerate side effects). Also have twitches, and feet cramp-mostly left side. I have read that damage can sometimes be permanent-in your experience, could this be something progressive like MS, or do I just need more time?
sorry, I forgot to ask another question-does neuropathy come and go? I seem to have times when it's very painful for days, then a few days when I'm mostly ok. also, is IVIG a treatment option for this?
I have had this disease for approximately three years, it is somewhat controlled by medication, but the numbness just returns and it is very hard to control. I have the falling down, kind of neuropathy, I feel that iI have fallen down about 200 times and have even spent the whole day laying on the floor unable to get up. It seems that there is no strength in my legs. However I found that with primrose oil capsules and vitamin B12 I have some relief. I was in a nursing home because I kept falling down with no notice of falling but I am now at home and managing by myself. I am now 67 years old, a widow and have 4 grown children all doing well on their own but they have little time for my problems. I hope that you get feeling much better. Thank You Nannie Gray
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