Hi ,
I have read a lot of the posts on this site and thought that someone might have the answer to my questions.
First, I will tell you guys my story.
The fall of '07 I got sick. REALLY sick. Neurological problems - dizzy, misjudging distance, hitting my head, leg and arm twitches, crawling skin, feelings of electric shock in my legs, arms back, exhaustion, sleeping all the time, feeling sick in any type of heat and so many more. So I went to my GP, she told me that it sounds like I have MS ( I was twenty when she told me this, yikes). She sent me for VEP EEG and noncontast brain MRI. The EEG was within the normal limits, the VEP was significantly delayed and suggested the possibility of demyelination. My MRI had an obstruction on it, but it appeared to be nothing. And no lesions in the brain.
To be careful she sent me to a neurologist. While I was waiting for that appt. my mom found that B12 deficiancy can cause these problems. So they did a B12 blood test, my levels were at 60. Very low. Very. They put me on B12 shots and things did seem to improve over the next couple months, still having symptoms, but not every day was bad some days were okay.
When I finally got to the neurologist, in January of '08, she was rude. Extremely rude and made me feel like an idiot, and put all my problems down to the B12 problem and the fibromyalgia. To humor my mother and I she did a contrast brain MRI and tested for lymes diesease. Both came back okay. And then the lovely doctor dismissed me as a patient sent me to a rhemotologist (???)
Later that year, I was passing blood. So I was sent to the GI specialist. They did scopes and they found I have celiac. Also I had diagnostic surgery to rule out endometriosis. And a barum test to rule out crohns. And I was sent to a rhemotologist to check for Lupus, and that was negative, just the fibro.
The September of '08 I had a relapse, really bad. and I went to my GI doc about it and she said that it was probably due to all the stress of the last year and it is to be expected. off and on over '08 I went to my GI to complain, just not feeling well and neuro strange things happening.
This January '09 things have started to get almost as bad as the Sept of '07, not as much exhaustion but everything else and more. So I called my GI doctor (who by the way is the only doctor that does not think I have lost my mind) and they moved up my schedule routine appointment. He told me to have the symptoms come and go is not typical of a B12 deficiancy and I am still waiting for the schyllings test to find out why I am lossing my B12, oh and I am also low in vitamin D (interesting eh?). Anyways. I showed him my VEP results and he was very upset that my previous neurologist had dismissed me, since as he says all of the symptoms of B12 def. are neurological. And he feels that I need to go to a new and better neurologist. He also told me that the damage done to the myelin due to the B12 def. takes a long time to repair, but should not be getting worse.
Hi one_word,
It certainly sounds like you are on the correct path. Very true that B12 deficiency can cause neurological symptoms which is why that blood test is included in initial testing when MS is suspected. Diagnosing MS is one of exclusion of other possibilities, but that doesn't meant that someone with MS can't have B12 deficiency or vitamin D deficiency. In fact, I have MS and was tested with a vitamin D deficiency last summer and have been working to rebuild my levels.
You may know already that Celiac disease can cause malnutrition and could explain vitamin deficiencies (ie. B12). Also common for someone with Celiac disease is to have another autoimmune disorder.
As for testing for MS, it is important to have MRIs done with and without gadolinium contrast which allows active demylinating lesions to be seen. When I first experienced optic neuritis, only an MRI of my brain was conducted (with contrast). When I experienced numbness/tingling, weakness in one arm, an MRI of my neck was conducted (without contrast) but then I was referred to a neurologist. It was then that MRIs of both my brain and and neck were conducted (with and without contrast) and lesions were seen.
So, yes, you should request an MRI of brain and spine if the new neurologist does not offer it. Depending upon the results, you might be required to undergo a Lumbar Puncture so that your spinal fluid can be tested for Oligoclonal banding which is a sign of active demylination.
Your gathering of symptoms is excellent. I might recommend that you organize the major symptoms and testing you've undergone on a timeline which will more clearly show the fluctuating patterns. Certainly, ask the neurologist what he will be looking for (and why) as well as what the other possibilities are besides MS.
Good luck with the new neurologist. You may not be able to alter the recommendations which you family give, but you can take the lead in seeking another opinion. Keep in mind that family members would not wish for you to be diagnosed with such a life-altering disease. It's difficult emotionally for them as well and denial is a common reaction. They also might just be trying to reassure you in an indirect way.
Hang in there and please do let us know how your appointments go. If you've got any more questions, don't hesitate to ask.
Lisa