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    B12 deficiency or MS

    Hi everyone,
    I've been having various symptoms starting in January, but they got bad this summer -- I fell down the driveway, very bad tremors in my hands, blurry vision, extreme fatigue, legs shake especially walking down steps, etc. They did an MRI - clean, and blood tests have ruled out everything else like Lyme, EBV, connective tissue diseases, lupus, etc. I do have a B12 deficiency but levels have been increasing steadily since April. Physical symptoms are getting worse. At the most recent specialist appt, I was found to have decreased sensation in my feet, and hypermobile reflexes. From research I've done, I don't have a lot of the other symptoms of B12 deficiency - other lab work doesn't match up to what would be expected - and with that deficiency, it seems I would have slow reflexes?
    No evoked potential tests were done yet, and it's proving to be hard to get an LP. Meanwhile, symptoms keep interfering with daily living and I just want treatment already. Anyone else had something similar/any suggestions? Do they ever start treatment without an official diagnosis and see how you respond?
    thanks!

    #2
    Hi: You should read up on the McDonald criteria for diagnosis for MS. It is a strict criteria for DMDs. They do not start treatment unless you have clinically isolated syndrome. For instance optic neuritis with a lesion on you optic nerve on MRI.

    This is for a good reason. DMDs come with many risks.

    Vitamin B12 deficiency mimics MS in many ways. Until your levels come up to normal completely, you will probably not get further testing. If you have symptoms after that, you may then get the VEPs etc.

    What are your symptoms? Have you had ON?

    I know it is hard to wait, but your neurologist can get a lot from your physical exam. More than just your reflexes. You may just have to wait a while for your Vit. B12 to level off.

    Take care
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment


      #3
      Hi,
      Thanks for responding. I'm familiar with the McDonald criteria. I'm just getting very discouraged. My symptoms are: extreme fatigue (like 2-3 naps a day, sleeping more than 10 hours at night), muscle spasticity in wrists and hands, left hand often "falls asleep," tremor in hands, legs shake especially going downstairs and after a warm shower, muscle weakness, balance problems (cannot walk heel-toe in a line), reading/memory issues, getting up to use bathroom in middle of night, muscle jerking while lying down, over the summer I had blurred vision around the edges of things.

      Once I moved up north and september hit, the vision stuff cleared up. Just saw opthamologist, everything is fine. Vitamin D levels are good, T3 uptake is low while T4 is WNL.
      My doctor at student health isn't convinced it's solely a b12 deficiency, so....who knows.

      I'm going to see a specialist at a clinic downtown hopefully soon, maybe he'll do evoked potentials or something. It's just pretty bad when your fatigue is interfering with school and work, you dread walking or going up and down steps, and after one 2-hour class you have to come home and nap. (and in class, you look like you have DTs b/c you're trembling so much). Hoping things improve......

      ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

      Comment


        #4
        I don't know what the 'wait' is about. Vitamin B-12 and vitamin D tests are blood tests. So the lab takes your blood and tests the levels. You said your vitamin D levels are good. What are they? They should be above 50ng/mL. Even if they were nearer 80ng/mL, you are good. Less than 50 to 80 is not good.
        I also see that you are in school and that raises some stress questions. I'll bet you have a degree of stress. You may want to try to find a meditation/relaxation class. Even though you say you are sleeping a lot, there is nothing wrong with getting your sleep analyzed at a sleep center. The bottom line is.. your situation sounds a lot like where I was when I got my dx of MS. But none of this stuff was ever discussed with me by my doctors. I learned about this sleep center / relaxation/ vitamin tests through my own research. I hope you find that you don't have MS. Good luck

        Comment


          #5
          Hi Jerry,
          Thanks for responding. I'd love to hear more about your experience of dx. My vitamin D levels were 55 back in August; the neuro I just saw last week did more blood tests and I hope to get those back this week. RBC is good, hematocrit is good, iron level is good....I know with B12 deficiency, there's usually a higher than normal homocysteine level due to the lack of B12 - my homocysteine level is WNL.

          The neuro on thursday didn't even do an evoked potential test because he thought it would be "worthless." (To be honest, he was not the ideal dr; he made disparaging comments about women and fibromyalgia, which had nothing to do with my sx or why I was there....). I was hoping he'd do an LP, but nope. I do try and do yoga - I used to swim and run, but yoga seems to be the best for me lately, and I am hoping it helps with balance problems. I actually dropped an extra class I had because it just wasn't worth the stress.

          Last thursday and today I had a strange tightness across my chest, right under the armpits, straight across my chest. It was tight and burning almost, and I had to press my hand against my chest to ease up. Thursday it only lasted a minute or two, but today it lasted 10-15. I don't know if this is the "hug" - I thought that was only in the stomach area?

          Hope you are well!

          Comment


            #6
            Hi tarheel:
            I'd like to add some information that might give you some clarity and perspective. It sounds like you're operating under some assumptions about MS that aren't true.

            Originally posted by tarheel13 View Post
            Do they ever start treatment without an official diagnosis and see how you respond?
            thanks!
            With rare exception, no. It's a tenet of medicine that people aren't treated for diseases they don't have. Put another way, people aren't treated for diseases there's no or insufficient evidence they have. In particular, when a condition has specific diagnostic criteria, as MS does, those criteria aren't disregarded to revert to a primitive method of throwing a treatment at it to see what happens. One of the purposes of diagnostic criteria is to prevent that from happening. Without a diagnosis, the risks of treatment frequently outweigh the foreseeable benefits, and more risk than benefit also violates a tenet of medical treatment.

            One of the McDonald diagnostic criteria for MS is that all other conditions that might explain the presentation must be ruled out (or accounted for). Vitamin B12 deficiency is one of the greatest mimics of MS, the other being Lyme disease. So until your B12 level comes up to normal and your symptoms are monitored for awhile, B12 deficiency can't be ruled out, which means that a definitive diagnosis of MS can't be made. That your presentation doesn't classically match B12 deficiency doesn't automatically exempt you from this criterion.

            Further, and most important, the McDonald criteria rely heavily on MRI findings. Since you don't have 1) MRI findings that are 2) consistent with MS, you can't get a quick, simple diagnosis of MS (at least, not from a competent, prudent neurologist). Do you really want a haphazard diagnosis from an incompetent doctor?

            Also, you can't get a diagnosis of MS if the applicable and necessary testing hasn't been done. All other possible conditions must be ruled out or accounted for AND the diagnostic criteria must be met. It's standard procedure for an MRI of the brain to be done as part of an MS workup. But it's possible that central nervous system lesions might be present in the spinal cord but not in the brain. You didn't say if you're had MRIs of your cervical and thoracic spinal cord. So even though a brain MRI might be normal, an MS workup isn't complete until the spinal cord has been imaged.

            Rarely, MS is diagnosed without MRI evidence. But those cases must be proved by other evidence, such as evoked potentials and lumbar puncture. So until you've had those tests done and the findings are consistent with MS, MS can't be diagnosed (at least, not by a competent, prudent neurologist).

            In addition, a diagnosis of MS requires evidence of dissemination in time and dissemination in space. For relapsing-remitting MS (RRMS), that requires evidence of at least two attacks/exacerbations/flares/relapses. If there is evidence of only one attack, a diagnosis of Clinically Isolated Syndrome (CIS) can be made IF all other evidence points to MS and all other possibilities have be ruled out or accounted for. Some of the MS treatment medications (disease modifying drugs, or DMDs) can be prescribed for CIS.

            The passage of time is a criterion for the diagnosis of primary progressive MS (PPMS). In addition to you not having had all of the required testing for a diagnosis of PPMS, enough time hasn't passed for you to meet the diagnostic criterion for time. The McDonald criteria still call for MRI evidence for PPMS. And, in oppition to your expectations, there currently are no treatments known to benefit PPMS.

            There are two other misconceptions you appear to have about MS. One is that you think you have to have a diagnosis of MS to treat the symptoms you're having, and the other is that treatment with an MS DMD will automatically alleviate your symptoms. Neither is true.

            If you have fatigue and spasticity, those can be treated without a causative diagnosis. You just have to have a doctor who's willing to do that and, possibly, medical insurance that will pay for the drugs.

            Armodafenil (brand name Nuvigil) and modafenil (brand name Provigil) are approved for narcolepsy and are frequently prescribed for MS fatigue. However, they're expensive and aren't FDA approved for MS fatigue, and many insurers won't pay for them for off-label use for MS.

            Stimulants used for ADHD are also often used for MS fatigue, and insurers often do cover those that are available as generics.

            Perhaps your doctor at the student health center will be able to prescribe an anti-fatigue drug and/or an antispasmodic for you while you're waiting to the the neurology specialist.

            Many folks with MS have found that a combination of dietary supplements alpha lipoic acid and acetyl-L carnitine are effective for treating MS fatigue (google them or search for them here at MSWorld).

            There are also several medications available to treat spasticity. Most often prescribed for MS are baclofen and tizanidine, but other muscle relaxers are also used.

            What may be the most unrealistic expectation you have is that treatment with an MS DMD will relieve your symptoms. That may or may not happen. The purpose of DMDs is to modify the underlying disease process of MS and, hopefully, reduce the number of attacks/relapses and slow the progression of the disease.

            Sometimes the DMDs set up a quiet environment in which nerve damage can heal, thereby relieving symptoms (such as spasticity). But that's not a guarantee. Many people on DMDs still need to take symptom-treatment medications. So a diagnosis of MS -- and starting a DMD -- is no guarantee that your symptoms will resolve or that you'll feel any better. Those symptoms may need to be treated separately with symptom-management medications. And, as I went over earlier, you don't need to have a diagnosis of MS to start on those medications.

            Originally posted by tarheel13 View Post
            I don't know if this is the "hug" - I thought that was only in the stomach area?
            The "MS hug" is believed to be caused by spasticity of the muscles between and around the ribs (http://www.nationalmssociety.org/cha....aspx?nid=1158). As such, the symptoms are experienced around the ribcage/chest/upper back, not around the waist/stomach (although pain can radiate to that area). Spasticity can occur anywhere, but the term "MS hug" applies specifically to the ribcage area, or the area where someone would usually be "hugged." So, wherever you got the idea that the MS hug occurs around the waist, you should disregard that source. Across the chest, under the armpits, is consistent with the MS hug.

            Maybe your doctor at the student health center will be able to prescribe an anti-fatigue drug and/or an antispasmodic for you while you're waiting to the the neurology specialist. And, hopefully, the specialist will complete the testing needed as part of an MS workup. At a minimum, maybe that doc can prescribe some symptom management medications for you.

            Sometimes it takes literally years for the body to give up enough clues to make a diagnosis from. Patience is a virtue, and sometimes a person has to work at developing patience. It's frustrating to have to wait, but sometimes that's just how it goes.

            Caution: Not proofread before posting.

            Comment


              #7
              Hang in there! The road to diagnosis of MS and other strange issues can be so long and frustrating.

              I agree with the previous poster and hope that has helped you better understand MS.

              Definitely ask for some drugs that can treat your symptoms. There's no reason you should keep suffering, and your neuro or a regular doctor at the school's health center should be able to give you something to try!
              Symptoms Oct 2009, Dx Feb 2010. betaseron 2/10-2/12. Copaxone 3/12- present.

              Comment


                #8
                Tarheel,
                I am glad you have been doing yoga and I would hope you are getting some benefit from it. There are so many people in the U.S. who have low vitamin D. Even though your levels are at 55, I would supplement at a low level. Your doctor would probably disagree. Why not ask?
                The next thing you need , as Redwings said, is a couple of MRI's. I had about 4 of them, prior to being diagnosed. Without completing the McDonald criteria, you don't know what you have going on. With all that you have going on, I would work to improve my diet and exercise regimen. Good luck

                Comment


                  #9
                  Hi Redwings,
                  I was not "operating under assumptions," I merely had questions in which I wanted to hear from other patients, rather than just going by the medical textbook, which can often leave out "real world" inormation and experience. But thanks for clearing everything up.

                  THanks, Jerry. I am seeing a specialist specific to MS next week; my dr at student health cannot give me anything for fatigue - I have a feeling those drugs are widely abused here on campus. She wanted the neuro I saw on thurs to do the evoked potential test, and he didn't - so hoping this one does.

                  Comment


                    #10
                    Originally posted by tarheel13 View Post
                    Hi Redwings,
                    I was not "operating under assumptions," I merely had questions in which I wanted to hear from other patients, rather than just going by the medical textbook, which can often leave out "real world" inormation and experience. But thanks for clearing everything up.

                    THanks, Jerry. I am seeing a specialist specific to MS next week; my dr at student health cannot give me anything for fatigue - I have a feeling those drugs are widely abused here on campus. She wanted the neuro I saw on thurs to do the evoked potential test, and he didn't - so hoping this one does.
                    Where are you going? Are you in NC?
                    Disabled RN with MS for 14 years
                    SPMS EDSS 7.5 Wheelchair (but a racing one)
                    Tysabri

                    Comment


                      #11
                      Hey tarheel13,

                      Just wondering what the outcome of this was, as I am im a very similar situation at the moment.

                      Mimi

                      Comment

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