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Avatar universal

Persistent Symptoms, MRIs Tomorrow, Disconcerting E-mail

So last week my doctor prescribed four more MRI scans and blood tests (which my psychiatrist actually prescribed).  All the blood results were normal except three things that were flagged: slightly low phosphorus, high A/G ratio, and very high B12. (I've been taking B12 supplements.)  The doctor's comment on the labs was "normal."  Last year my brain and lower spine MRI were normal, except a slight disc bulge in L5-S1.  I didn't have a cervical or thoracic scan, but I will have those over the next week or two.

Several weeks ago when my symptoms from last year re-emerged and before the walking difficulty had manifested, I wrote to the MS Foundation.  I just got an email back from one of their experts:

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So my B12 is not low and I've stopped taking supplements, but am I wasting time and money getting MRIs?  I feel like I need the tests, but the above reply makes me question my own sense of logic.  I can ask my psychiatrist to up my dosages or try new drugs on me as that doctor suggests, but I am on Zoloft, Wellbutrin and Klonopin now and both my psychiatrist and I have the same POV that I shouldn't become reliant on prescriptions in the long run.  She does think my symptoms could be caused by anxiety.  If the MRIs come back normal again, should I just accept that I'm nuts and become a total recluse, because that's the effect these MS-mimic issues have had on me.  I don't go out when I don't need to because it often hurts to walk and sometimes my left leg doesn't cooperate.  I don't drive unless I have to because my vision goes randomly blurry or unfocused.  I don't feel suicidal or totally hopeless like I very often used to before I was medicated, but all these physical issues have only gotten worse.  I don't know how I'm supposed to will myself out of it and just carry on with life when everything is out of whack.

I should probably be posting this in a psychology forum and not here.  I'm just so frustrated.
8 Responses
1382889 tn?1505074793
I think the right question depends on what it is you ultimately have. Kind of a light bulb moment for the dr to connects the dots.

I agree with Sadie, the email to you was inappropriate. They cannot assure you of anything.  Disregard and keep moving forward with your tests.

The answer is out there. How are you feeling today?

Julie
1382889 tn?1505074793
I am not sure I understand this post.  Did I miss the email that the MS society sent you?

No, no, no, don't become a recluse, don't give up, no, you are not wasting your money on MRI's, and no, please, don't lose hope.

I am not familiar with the anti-anxiety drugs you mention but at this point, you are potentially close to finding out what is going on. You gotta hang in there.  I think the c and t spine MRI's will give your dr some direction.  Any other tests mentioned?  Has your dr told you what he/she thinks it going on other than possible anxiety?

Are you sharing your burden with any of your friends and family?  I would say based on what you are going through, frustrated is a competely normal reaction.

Julie
Avatar universal
Oh...I don't know why it didn't post.  I'll try again:

" "We appreciate your inquiry.  You came to the right place to inquire about the possibility that you have Multiple Sclerosis (MS).

First off, let me assure you that you do not have MS.  The diagnosis of MS requires the presence of MS plaques/lesions on MRI.  Given that your MRI's of the brain and spine were read as normal, then, by definition, you do not have MS and your symptoms are not from that condition.   So please put that out of your mind.

You did not report what your serum vitamin B12 level was but I have a number of patients with symptoms similar to yours that have had low normal serum B12 levels of between 200 and 450.  Accordingly, I recommend that all patients with a serum B12 level less than 450 take an oral B12 supplement of 1000 mcg daily.

Finally, you do have to face the possibility that some, if not the majority, of your symptoms are psychogenic.  If your current medications are not helping your anxiety and depression, ask your Psychiatrist to adjust them.

I hope this helps."
Avatar universal
Yes, everyone I know knows everything that's been going on.  I'm sure I'm really annoying and that some people must think I'm totally nuts.  My mom's cousin has some kind of disease that looks exactly like MS and she's now blind in one eye and wheelchair-bound and told my mom it sounds like I have MS, but my mom insists  I don't.  I've told my boss because I can't concentrate at work a lot of the time and I've actually fallen a couple of times and don't want him thinking I am drunk.  My family knows I am not comfortable driving because of my vision and because my feet go numb so often.

My psychiatrist prescribed CBC, TSH, thyroid panel, testosterone, free testosterone, lipids...everything normal except what was mentioned above.  Had an HIV test separately and that came back negative.  That's all the tests so far.  Two MRIs tomorrow and two more next week.  
1729090 tn?1310152943
here is my answer to you based on my own life....I have dealt with many health issues and lots of negative test results...just because they are negative doesn't mean you aren't sick...not that I'm saying it's all in your head because I am NOT....I am saying keep looking...you will find a diagnosis...have you had an EEG??? That was a test that gave me many answers that I was looking for...encephalopathy....many types many treatments but to know is a huge relief as I too felt like a crazy person!  Hang in there and keep asking questions!!!! I thought I'd asked them all but then a glimmer of hope when the right question asked!!
Avatar universal
No.  I had an EMG, which I'd prefer never, ever to have done again.  

What question did you ask that was the right one??
1493284 tn?1294879312
Who the heck is this person who's telling you you for sure don't have MS? He should've at LEAST qualified his statements.

For example: "First off, let me assure you that from what I have read, you almost certainly do not have MS. HOWEVER..."

And saying that MRI plaques are "required" is irresponsible. Also, he mentions nothing about Clinical diagnosis--- you're tripping and falling and your vision is going blurry-- what the HECK?

I feel for you, is ultimately what I mean to say. And I empathize with the self-doubt, shame, all of it.  Hang in there, friend. The truth will eventually set you free.

Sadie
1559533 tn?1308952161
Good luck,

Im going on 4 years of not knowing. I have several lessions but they all blame my history of migrains for that.

I do have low b12, and vit.d, a shout out of sjogrens and dismissed as a false pos with no other testing, I have had no mri changes. I have no visual disturbances....well some blurriness from time to time but mild I dont think mine is related. I do have dibilitating weakness, numbness/tingling, whole body feels heavy, fine motor tremors, stutter at times, crazy bladder at times, difficulty speaking even making sentences with brain fog, and weakness that keeps me limited to 2-3 word statements. But these all begin to reslove in days and maybe 2-3 weeks completely gone.

I have been told several times that its depression, anxiety, my pschy tried me on several meds and then suggested provigil wich I refused.

Funny I was a pschy nurse for 5 years and did not see these types of symptoms, well some as side effects from of the meds.

I with you on what im going through makes me crazy, sad and anxious, its not the other way around.

Have you had a sleep study and a full range of labs to rule out all other things like lymes.

Good luck
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