b12 deficiency or something else??

[tjmorrell]

Hi, I am a 36 yr old female-started having tingling in feet/legs back in April '06, pain shortly after. Then started in hands/arms, worse at night, at times would wake me up. In July, woke up with left leg numb from knee down (intense pain in leg night before). Blood tests showed B12 deficient in Sept, reading 101 (normal 200+?). By then was unable to focus, fast heart rate, extreme fatigue, but couldn't sleep at night because of pain, had lost 30 lbs (since May), no appetite, pain in face, pressure behind eyes, and legs (especially left) heavy, hard to walk, and twitching, in mostly legs. Immediately got B12 shot, another days later, then 5 shots once/wk, now once/month. Diagnosed with pernicious anemia from Shillings test. Even after B12 was normal, had left side of face go numb, couldn't squeeze with left hand, whole left side weak. Another time, left leg too weak to walk upstairs.  Am on 600mg Neurontin in am, 600 mg at night, has taken away most of pain in arms, face, right leg, but still pain and pressure in left leg at times. Had other tests, all normal-MRI+CT of head, EMG, blood tests for Lyme, Celiac, Myeloma, upper GI series, chest, back+left leg xrays, saw rheumatologist who suggested Fibromyalgia, neurologist who said could be B12, but didn't want LP or MRI of spine, and that B12 shouldn't cause such weight loss, check for cancers. My dr thinks possibly MS, and says wait and repeat MRI in 3 mnths. Have only gained 2 lbs, still extremely faint when standing up, and still wake up with pain in left leg.  Any ideas on other tests, or how long this will last?  thanks

[Nana of 4 Boys]

Since April of 2006 started out with severe fatigue in legs and shortness of breath.  Dr. did Echocardiogram normal, bloodwork for anemia, normal.  July 2006 vertigo with nausea presented and is still going on. August 2006 gait and balance disturbance began along with numbness, tingling in hands.  Trouble swallowing more than normal.  Hospitalized Dec 2006 for balance disturbance, vision blurriness, pain in right occipital area and numbness in right side of face.  MRI brain-no lesions, thoracic- 2 lesions.  C5-C6 disc bulge, C6-C7 disc bulge.  Spinal tap performed-normal, Positive Romsberg, Positive Hoffman's sign, B-12 count 210 little on low side.  Was told possible DDD and carpal tunnel.  Have hyperactive reflexes with positive Babinski.  Bloodwork checking for paraneoplastic antibodies pending along with VEP EEG and SEP EEG.  Can someone please help I am at my wits end thinking that I am crazy.  After release from Hospital no longer need to take hormone replacement therapy due to hot flashes and nights sweats just went away.  Normally cannot gain weight since release from hospital I am averaging a gain of 2-3lbs per week.  No more consumption in diet than before.  Have been told no stroke and doesn't look like MS.  Neurologist said Central Nervous System problem possibly

[surendranath]

I forgot to mention that I'm 28 years male

[surendranath]

Hi ,

     I'm was diagnosid as B12 defeciant and taking Methycobol shots . Initially i took shots in alternative days and now I'm taking once in a week. I have undergone some tests like EEG, MRI, LFT,ENDOSCOPY which are resulted negative. I'm also suffering from pain in left hand, left shoulder and around the left chest. I consulted cordiologist and I undergone ECG, ECHO DOPPLER test, TMT. He told everything is fine.

      The actual problem I'm facing is ....Some times, My blood preasure is getting low, getting sweat in left side of the body, tingling sensation in the left side of the face.THe pain I mentioned above ( Pain in left hand, aroun the left chest and left shoulder) is still there.

       Can anybody please suggest me what could be the problem/

[tjmorrell]

Hi Terrijean, thanks for your response.  What a great feeling, knowing that other people understand and are compassionate enough to encourage me!  thanks, I really need that right now.  This has been really hard for my family, I have 2 kids, ages 6 and 3, and a great husband who helps out a lot, but still has to work and gets tired.  I am trying to be positive and all that, but yesterday, I was so sick, I'm assuming from the Fentanyl patch, this is the 3rd time that I've been sick from it.  I don't seem to have a lot of options though, I can take other pain relievers like Demerol etc, but those take a while to get relief, and I can never predict what days I will have a lot of pain.  Yuck.  I will try to keep my head up, and not go completely nuts, and do plan to keep insisting on tests to find out what's going on with me.  Do you think that you have MS?  It seems like a really hard thing to pin down-do you just wait now, or do you plan to have more tests?  I feel for you.

[terrijean]

Hi tj,

I am now 45 years old and at the age of 41 had sudden onset of severe symptoms in which I was off work for almost 2 months.  I have a lot of the symptoms that you have on and off, and I have periods of exacerbations/flares to this date.

I still am undiagnosed but have undergone the complete gamate of testings as you.  I have been told by others who were diagnosed with MS that sometimes it takes years to get a diagnosis.  I consider myself one to be also in "limboland" at this time.

Looking at others on your posting, I have had a thyroid problem since 1996 and have been on replacement since that time.  If your thyroid level came back within normal limits, I wouldn't be looking at that as the cause of your symptoms.

Before the onset of my acute symptomatology at 41+, I was perfectly healthy with no problems except for my thyroid.  When this happened to me, I was so panicked and scared because it felt like the end for me, thinking I had a stroke or something.

I just wanted to tell you that you are not alone and just be your own best advocate to find your diagnosis, and keep your head up.

tjj

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

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.  
   The symptoms and story that you describe are consistent with B12 deficiency, but other possibilities should be ruled out as well.  B12 deficiency can lead to demyelination of the corticospinal tracts (control muscle movements) and the dorsal columns (can result in numbness and tingling, loss of balance and a sensation of not knowing where your feet are).  This is called subacute combined degeneration.  B12 deficiency can also lead to memory problems, depression and even psychosis.  The weight loss does not seem to fit in this clinical scenario.  I am also suprised at the pace of the progression of your symptoms and would recommend a thorough workup.  Spinal tumors, other causes of demyelination in the spine (such as multiple sclerosis) and lymphoma can all cause the same symptoms.  The tumors/lymphoma can also be associated with weight loss.  I would recommend an MRI of the spine (cervical, thoracic, and lumbar) with GAD contrast, a lumbar puncture (to assess for inflammation, IgG index, oligoclonal bands, and cytology/flow cytometry to assess for lymphoma) and a CT scan of the chest/abdomen/pelvis with contrast (as a general survey for cancer).  I agree with B12 injections for replacement and would recommend following your methylmalonic acid and homocysteine levels in addition to your B12 level to assess your response.
I hope this has been helpful.

[tjmorrell]

update-my ultrasound of internal organs was normal.

[NURSELPN]

Hey we have the same initials... :-) TJM

My last post re: thyroid testing...A one time thyroid test (TSH)does not rule it out!!! Many doctors only test the TSH & most likely that is all that was tested on you. I would be surprised if they did anything else. I would request all of those tests, mentioned above, before thyroid is ruled out...Graves signs & symptoms can come & go, including low TSH, and still be the culprit. You need the rest of the testing done to rule it out completely.

For your own records, get copies of all your labs & testing that is done from all of your doctors. That way if you see another doctor you have them. It is your right, by law, to have these copies.  None of the physicans, you have seen, should have any problems with it. YOU ARE YOUR OWN BEST HEALTH HEALTH ADVOCATE. Get a second opinion if you aren't getting answers.  Are you from the USA? If so, (IMO) I would be going to a major medical center for a second opinion. University teaching hospital in your state...if you are in the US.


I am also taking Neurotin for nerve pain. Has your doctor tried any other pain medication prior to prescribing Fentanyl? What strength of Fentanyl patch did he put you on? That's a very strong medication. Have you goggled that medication to see what the side effects are? Your pain must be pretty bad to require such a strong medication. Beware of the side effects & that it is very very habit forming.

I hope the neurologist here answers you soon.

God Bless & keep us posted, ok
TJ

[tjmorrell]

Hi there-thanks for all the info you have provided.  I didn't realize that there were other thyroid tests, and am fairly sure that I have only had the 1 test done early on.  I will ask for the other tests.  I am in Canada, and have been lucky to be healthy up until now-and had no idea how complicated it can be to find out what's going on with your body!  I'm sorry that you are also dealing with this stress and pain, this has been a horrible time in my life-the worst actually.  I have had Tylenol 3's, Morphine and Demerol for pain, but the ups and downs of those haven't worked for me, and it takes more of it to work now.  My dr started me on the 50mcg Fentanyl patch to get continuous relief, but that made me sick, so I tried the 25mcg, and went back to the 50mcg.  So far, so good, it has been 2 days on that one.  He wants to wait to increase the Neurontin dose.  My pain can be quite severe, especially in my lower left leg.  And I have a lot of twitches lately, and my jaw has been bothering me too.  Also, the urinary urgency has been urinary incontinence, only 1 time, but still disturbing and horrible.  It could be from the patch?? but that's another reason why my dr wants me to have a spinal tap, to rule out MS.  I have an ultrasound of my abdomen tomorrow, and after the spinal tap, who knows??  I'm running out of options-any suggestions are welcome.  thanks again!

[tjmorrell]

latest problem-I am now experiencing urinary urgency and urinary hesitation at times. My dr has put me on a Fentanyl patch for the pain (along with the Neurontin), so it could be from that, but now wants me to have a spinal tap despite the normal MRI to check for MS.  
I thought I should add this in case it's significant.

[tjmorrell]

thanks for the comments-my doctor tested my thyroid in the first blood tests that I had done, and said that my results were normal.

[NURSELPN]

tjmorrell,

I agree with Rescuepoor.

along with the TSH,ask the doctor to do a free T-3, & free T-4. You also need to ask for thyroid auto-immune antibodies to be done TSI (for Graves disease - high thyroid) & TPO for Hashimotos disease (low thyroid)

I have Graves disease & B-12 definency & lost 60#'s without even trying. I had nausea, tremors, vision changes & eye pressure or pain, generalized muscle weakness, extreme fatigue, insomnia, shortness of breath, hair loss, difficulty concentrating, numbness & pain in extrenities, nervousness, heat intolerance, increased bowel movements,  palpatations, & panic attacks, depression & mood swings, memory loss, & brain fog.

After being diagnosed with Graves, I continued to experience increased numbness & pain (burning in feet) in my extremeties. Then I started getting intermittent numbness in my face. My family physican was at his wits ends with the new unexplained symptoms, so he sent me to a neurologist who ran a battery of tests & my B-12 came back @ 89. I began treatment right away but most of the symptoms still remain & they have even worsened some. When I researched low B-12 I found that I had been experiencing all of the symptoms for quite some time. My mouth (tongue) frequently felt like it had been scorched. Memory loss... numbness in extremities. I took B-12 injections twice weekly for about 9 mos then went to once weekly for about a year, now I have just started taking it every two weeks. My levels are checked every two months & they have been very irratic.

Ouote: By then was unable to focus, fast heart rate, extreme fatigue, but couldn't sleep at night because of pain, had lost 30 lbs (since May), no appetite, pain in face, pressure behind eyes, and legs (especially left) heavy, hard to walk, and twitching, in mostly legs.

You could have thyroid disease without having all of the symptoms (I listed above). The symptoms can wax & wane or (come & go). Your unexplained wt. loss is a big sign that you need to be tested. Many of your symptoms have THYROID written all over them,particularly hyperthyroidism (over-active thyroid)

You can learn more at this web site:
http://www.elaine-moore.com/gravesdisease/symptoms.htm
Please let us know what you find out, OK.

God Bless, TJ

[Rescuepoor]

I would ask for a complete Thyroid panel.

[tjmorrell]

hey, thanks for the info-I will ask to be retested again.

[burningpains]

Hi there.  Lyme blood tests (the basic ELISA) come back negative in an extremely high amount of people who have Lyme.  They are pretty much worthless tests.  You should see a Lyme-literate M.D. and have your blood tests sent to a lab such as Igenex.  You should be checked for mercury toxicity, because Lyme and mercury (and other metals and toxins) work synergistically in the body.  Did you have your CD-57 tested?  Was it low?  Often, people who are immunosuppressed don't create the antibodies that would normally be found people who have healthy immune systems, so if you have a candida problem, mercury problem, high viral load, etc...it's not surprising that your antibodies aren't numerous.  just like me!  Do a google search for lyme support groups and message boards where you can get a lot of good information.  A lot of mainstream doctors, unfortunately, do not realize how common Lyme, mercury toxicity, and candida problems are and say "it's just a fringe group."   Or "we don't have Lyme in this part of the country."   I think this is criminal and dead wrong.  Good luck to you!  I'm not saying 100% that you have Lyme, but it shouldn't be ruled out.

P.S.  The water dripping sensation is very common with Lymies.  I have it.  It drives me crazy!

[tjmorrell]

sorry, forgot to mention that I also had sensory issues, like toes feeling wet, feeling like water dripping down my leg, all on left side, all after B12 levels were normal.  thanks