thester6474 please read this... similar weakness, tingling, pain on one side of body with low b12....

[overthis]

hi tiffany,

i saw your post from 5/27 and can't believe how similar our problems are.  i'm 22 and a female as well with problems on my right side. mine started with pain and weakeness leading to twitching and tingling. do you have any weakness on your side? i have been to a whole heap of doctors as well and have been dealing with this for a few years now. recently i discovered that my b12 was low too. 150 the first time and 201 the second, but i was never prescribed with b12 injections after having a third blood test that proved that i was not deficient (i don't really understand how this works) from a hemotologist. i'm now amidst another set of mris (it has been a year since my last one). did the doctor say that you were b12 deficient? do you have perconius anemia? because that, from what i have read, can cause that.

right now my doctor is strongly considering CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy ) and ms. CIDP is very very rare, so there is a chance that maybe your doctor doesn't have as much experience with it. My doctor has only seen one case in 20 years. Guillan-Barrone syndrome is the acute version and more common. I'm definitely not a doctor, but am dealing with the same issues so it is a thought.

do you remember what the doctor said about your reflexes?

i hope things get better. i know how frustrating it is. please keep in touch and let me know if you have any ideas.

[bree424]

look up Myalgic Encephalomyelitis it often has one sided weakness with lots of pain.

[thester6474]

I also find that sometimes when I sit or lay down, I forget what position I am in.  I cannot feel that I have any appendages.

[thester6474]

Hi, I have mild focal kyphosis of the cervical spine, mild loss of intervertebral disc signal intensity suggesting mild early degenerative disc desiccation, mild central canal stenosis secondary to mild annular bulging.  And my first neurologist mentioned nothing of the above to me, like it was of no importance.  I had to find out when I went to his office to get all of my paperwork, test results and MRI films.  My memory is a definite problem anymore, if I don't type it in as an alarm or reminder on my phone, it is good as forgotten (especially names, tasks, medication and things of that sort).  I also have a lot of problems with word recall, I can be trying to have a conversation, and just get stumped on the easiest of words.  My god it is so embarrassing, especially because I am considered a professional, I find myself shying up a lot more when I get around people especially my student's parents.  My original neurologist told me that my B-12 levels were extremely low, that my body was crying out for B-12.  However, it seems as though he has forgotten that he prescribed a B-12 injection for me.  He told me that my B-12 deficiency could be the cause of my symptoms.  He has not scheduled any other bloodwork though, to determine my current B-12 levels.  My current Neurologist has told me that my B-12 levels were normal, and that they will not cause the symptoms that are present.  He states that his main concern is Multiple Sclerosis, and has scheduled another MRI of my brain with and without contrast Friday afternoon.  I am always tired, no matter how much sleep I get, or how much rest I get.  Heat is a major problem as well, the hotter I am, the worse I feel.  The burning sensations are not one sided anymore, I feel it all over the entirity of my body.  Nothing seems to make the pain I feel subside, not even the Pain Medication Vicoprofen (Hydrocodone and Ibuprofen) that was prescribed by the first Neurologists months after my first appointment with him.  I literally had to call and ask him to call in a medication for me, because I felt the pain was almost unbearable. And after the burning sensations seem to stop, which is not for long, I feel as numb in that location.  I also have daily headaches, headaches that with onset, they are extremely severe despite my use of nortriptyline (doctor/neurologist prescribed for headache prevention).  I also have severe menstuation, which lasts about a week at a time.  Sometimes I get up and I feel like I am unable to walk because of the burning pain I experience. I also notice that I have become a little more depressed only because I still do not know what it is I am experiencing.    It seems as though everyone I know tries to understand what I am going through, but no matter how hard they try they will never completely understand.

[gbboy]

Yes the memory loss is odd. I have that problem quiet often. It is terrible but my friends and family are learning to help and it is getting a little bit better with each dose of b12. For a while I was calling the dog by my son's name because that was the only name that came to mind. Sometimes both of them came when I called. My husband knows when I am having a bad day by what words come out of my mouth. Let's not forget how exhausted you can feel with a b12 problem. It effcts the fomartion of the red blood cells also I believe.
Is the spinal degeneration apart of the b12?

[feduplis]

we seem to have a theme going here....I have b12 as well!!!   I also have spinal degeneration. not only do I have the numb pieces parts I get the memory loss. Try forgrtting what the word "Monday"  means!!! HA HA HA   Anyway, I can relate and I feel for you. Hang in there!!! We are all still here to enjoy life to it's fullest and drive our family crazy!!!


BEST WISHES TO YOU ALL!!!

[gbboy]

You guys - according to my neurologist the b12 level should be Low normal 200 - 1,100 (I think I can't really remember the top number). They like it back up in the 600 range I believe. S0 150 would not be that normal of a reading. Mine was 95 when first diagnosted in April and is up to 215. I still have numbness all over that comes and goes but is bad in certain areas always. the thing that bugs me the most is that half of my face goes numb and gets cold. Ever have half your nose cold and numb - its wierd. I've been getting the b12 shots since april and still not totaly better. next blood test is in 2 weeks. My neurologist wants to use my case a teaching lesson becasue it presented so differently than normal. I am glad it was not MS which the internest had me thinking. Hang in there sometings things take a while to cure. Call the original neurologist and get back on the shots.

[thester6474]

Hi, still no news on a diagnosis.  My VEP came back normal, I am getting so tired of all of this testing, pain and depression.  I have to go back for a second brain mri next thursday, july 13th I think.  UMM, I have noticed an increase in pain, burning pain, now all over my body.  Everyday, I find myself in pretty severe pain, a burning sensation all over my body.  I wish I could find something non-habit forming that I could take for the pain.....I have been prescribed vicoprofen for pain, but I have only taken them like 15 times in the last three months, I am so scared of becoming addicted.  No over the counter pain relief halps anymore, I have tired aleve, tylenol, excedrin and advil.  I also have daily headaches, which are extremely harsh, I have started taking excedrin migraine, because nothing else helps anymore.  Please let me know if you are getting anywhere with a diagnosis.  I am in serious need of help.  

[thester6474]

I am sorry once again, I spend very little time on the computer anymore, because I stay so tired and weak.  As for the muscle weakness, indeed, my whole right side is weak AT ALL TIMES.  I did have reflexes when both neurologists checked them, however they didnt say much about it, I am guessing they are fine.  One of my neurologists has now, after months of nothing, referred me to a Rheumatologist.  He swears that whatever it is that is happening with my body, is out of his expertise, where as the other states that it could possibly be MS.  My EMG was done by that same neurologists, however I hope they do not decide to give me a spinal tap.  I am petrified of the outcomes with that.  After my new neurologists checked my strength, he concurred again that MS is his main concern.  I just went to a Savannah Hospital (about an hour away from me) and the VEP(Visual Evoked Potential) done, I will let you know the results of that as soon as I am told.  I have started having headaches everyday, morning, noon and night.  The weird thing with this is, my old neurologist has me on Nortriptyline (Pamelor) for headache prevention.  I also have noticed that my eyes often gets blurry, especially when I try to concentrate hard.  My blood pressure has also been elevated, the last few times I had it taken, my old neurologist even pointed that out.  Quite observant for him, I must say.  I was told by some of his nurses that this to could be a result of pain, stress and atigue I experience everyday.  As for my old neurologist, it seems as though he forgot I was told by him, that my B-12 was extremely too low.  He has not ordered any bloodwork, and I tend to have a bad memory lately.  It was one of the things I had on my agenda of things to ask him, but so much for that one now.  And I am a little too embarrassed to call and ask if I need to continue to get the shots, because I was due one next week....I just do not want to look like a dummy.  

[overthis]

hi tiffany-

so what is the latest with your neurologist?  what is your next step?  personally i would ask them to do the blood test to test specifically if you are indeed b12 deficient (if you are not then they are wasting your time with b12 injections).  i had a hemotologist who did the test.  it is a very standard test.  my b12 was 150 and i am not deficient even though it is low.  sounds wierd but it isn't abnormal.  either way though the shots won't hurt you from what i have read.

i'm sure they tested your reflexes.  do you remember you leg moving when they tapped on your knee or your arm muscles moving when the hit your elbow.  definitley it might be something to ask.

i am definitley plagued with obvious significant muscle weakness on one side. are you having muscle weakness?  they have prob tested your strength.  

i actually had my mri results today.  my brain and c-spine were both clean (my brain was also clean last year).  my shoulder was also done b/c of the weakness and although there is a rotater cuff tear it doesn't explain the multiple muscles that are weak in my arm.  

my neuro has already set up an appt. with a doctor who only takes rare neuro cases (heads a hospital) and with particular knowledge with cidp since that isn't till july 11 he is having my lumbosacral and thoracic spine done with mris just to make sure i have a good base going in (ruling out everything).  

i saw your emg and your spinal tap were normal?  right?  i have not had either done yet because he wants the neuro who specializes to do it.  

unfortunatley your screen name was blocked out... so i hope you get this...

try not to get too down.  i know we all have our moments, but it doesn't help our body deal with this!  

let me know the deal!

[thester6474]

Amazingly neither Neurologist mentioned anything about my reflexes.  Also my right side seems to always be numb, with some severe pains at times....How many MRIs have you had, and have they all been normal.  I have had two (1 cspine and 1 brain) and now my second Neurologist wants to perform a second one of my brain.  I dread seeing what all tests I will have to endure after I see my first Neurologist again Monday afternoon.  I will ask him about CIDP, that is, if I can remember.  I have a hard time remembering things which became present to in the last few months.  Do you have any problems with your eyes, I find myself having a lot of problems with my eyes, causing them to become very blurry.  I have ran myself ragged trying to research these neurological disorders, and am just finding myself okay with the prospect of MS (it could be much worse).  Feel free to contact me if you have any questions, concerns or ideas that you may find vital on our road searching for a diagnosis.

[thester6474]

I am so sorry, I have not been online in a little while, been too tired to sit up and concentrate on anything.  I am sorry that you are going through what you are going through, especially when it seems like there is no end anywhere near.  I took a series of laboratory tests in late March and it said my B-12 levels were really low (214).  Honestly once my Neurologist figured out that it was low, he prescribed a B-12 injection every week for a month and one every two months afterwards.  I have seen no improvement in my symptoms, they seem to only have gotten worse.  I have just started seeing a second Neurologist, and according to him his main concern is MS, which when I first heard this in February for my General Practitioner it really depressed me.  But, I am much stronger and can cope with the possibility of MS better now.  Honestly the first Neurologist I was seeing probably doesnt have much experience with CIDP, he seems kind of young, not saying that he isn't intelligent.I am hoping with me seeing two different Neurologists and my General Practitioner someone will be able to enlighten me on my situation...Feel free to e-mail or IM me at akivas_wifey04***@**** if you have any other questions, concerns or ideas.  Thanks for contacting me, it makes me feel a little better, knowing that I am not the only one going throught this mess.