Multiple Sclerosis Community
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Avatar universal

very odd symptoms...would love to hear your comments

Good Morning All,
51... feeling sick... and lost at times.  I've read your threads for a while and have posted at a few other forums. Hope you don't mind for the long post but trying to make sense of new dx of b12 deficiency at 159.  History: Lifelong felt healthy as a horse only periodic migraines, allergy/sinus infections, tingling legs/arms episodes, eyesight normal with floaters. Health issues weren't ever a problem. Have very high pain tolerance and haven't been one to take meds for much of anything.  Not even OTCs.  Basically active, always profound love for family/friends, great job...a definite optimist.  Was an avid runner and rode bike much of my life until injured knee at age 40.

10 yrs ago developed eyelid twitches that lasted for days and days and legs heavy when walking.  Restless legs during rest.  Didn't think too much of it as I was working alot of OT and chalked it up to not getting enough rest.  Intermittent heaviness in legs ever since.  Reflecting back as teenager I awoke once with complete paraylsis..both legs and literally crawled to get out of bed.  Home alone at the time and normal feelings returned back approx. 30 min.  Was just a kid and of course didn't take anything serious then.

Severe fatigue started approx 5 years ago when I found myself taking 4-5 hr naps every Sat & Sun.  Periodic swollen lymph leftside back of neck and underarm.  PC wasn't concerned at that time.  Yearly physical mentioned severe fatigue and GYN dx was post menopausal with premarin as rx. Felt better off and on for only a few months but the fatigue slowly crept back in.  2 years ago sudden strange symptoms appeared out of the blue mainly on upper left side with add'l new symptoms cropping up and initial ones subsiding.  

Started with left chest pain radiating from front to back and periodic clavicle swelling, underarm lymph swelling... that went away and shortly after came body wide migrating twitches, nerve pain, numbness/tingling, internal vibration, pins/needles, bee sting/type pain on lower legs, hands/feet severe burning sensation as if ben-gayed, short-term limb paralysis upon waking, painful broken blood vessels appear w/no apparent reason on insides of arm, hands, ankles, legs... intermittent blurred vision/bottom of letters are shadowed, periodic forgetfullness.  Nighttime driving, lights are very bright with halo appearance.  Have felt as if I've been poisoned or have a slight case of the flu many days out of the year.  Some weeks worse than others.  1 year ago-novacained feeling face left side, eyelid now won't spontaneous blink, eyebrow droops slightly if mild paralysis, vision comes and goes... and the list goes on and on.

Tests began 2 years ago repeatedly for lyme, cat scratch, RA, aCL, Lupus, all thyroid panels, diabetes... the usual CBCs...normal... X-rays, CTs, Cardio, Venous Dopplar, Lymph node biopsy underarm... all normal.  CRP-High. Year ago nerve conduct tests, MRI....normal for Myasthenia and MS.   2 months ago Rheum ran another full panel of assays and found b12 deficiency without anemia.  CRP showed normal at this time.  Sure don't like positive tests but to have validation of my malaise was like the heavens opened up!  A few docs and others in my world suggested stress, menopause and more or less... said "we're getting older" as the culprit.  I've found that docs see me as a professional and do not look sick and that I have the usual signs of aging.  Recently saw neuro-ophlamologist, a doc who was older than the hills... but I figured "ok, good he'll have experience!".  :) .... Eye exam, balance and reflex tests... normal.... annnnnd... all the old fart could talk about was how great my body mass index is and told me I was getting older and to take water aerobics. ???   hmmmmffffff..... needless to say I'm pretty certain aerobics of any kind won't fix my crazy novacained face and eyelid and some of this other stuffola going on.

I know B12 deficiency is uncommon and seen in underpoverished nations and vegans.  Since my other labs are good and I have a cast iron gut, no heartburn or IBS symptoms... Not sure why my body is not absorbing b12.  Docs are pretty vague since they don't have a clue.  Wondering about b12 and MS.  Rheum says he still thinks I might have lupus and since MS was mentioned... even tho negative... he says MS is a possiblity and to see return to see him again in 6 mos. 6 mos is along time feeling like the devil.  

Again... my apologies for the long post but 2 years of relentless symptoms is a long time.  

Your comments on my book here will be very much welcomed.  Looking sooooo forward to hearing from you.

Have a great day everyone!

4 Responses
198419 tn?1360245956
Hi there,

Welcome to the MS forum.  No worries on length of the post.

We have discussed B12 and MS here on our forum, but I'm just not versed enough to speak about it. I know it can cause a lot of problems though.  

After only one brief read, it does seem to me that you have or had more than one thing going on in the past that may not necessarily be related to each other.  Not being a Dr. that is just my gut instinct talking.

As far as what your rheumy says about MS and lupus and to returning in 6 months, I agree that is a long stretch when your body is not cooperating.

I don't see any harm in making an appt. sooner and then coming out point blank to the Dr. and reiterating what is going on, and then followed up with a question, like, what other test do you have to run to find out what is wrong with me?

Welcome again, and see you around!
338416 tn?1420049302
I think with your problems with swelling, and your broken blood vessels, it's likely to be something like lupus.  MS is a neurological disorder that can cause paresthesia and facial weakness, as you describe, but so can myasthenia gravis.
Avatar universal
I've found that many specialists don't seem to want to see difficult to diagnose patients perhaps because they take up too much of their time ...and so the long stretch for return visi.  To date, I've been told what I don't have going on and not what I do have.  I return to my PC in two week for b12 labs. One neuro who did conduction tests and mri said I definitely have something going on and not to stop at him.  I spoke with PC about going to med center where there are a triage of docs and I he's all for it but wanted to wait until after the b12 repeat comes back.  

Thanks do kindly for your replies!  Have a great day.  
198419 tn?1360245956
You are very welcome.  Good luck w/the b12 - hope it's gone up for you.  

Would be good to get up that collection of study results to have w/you if you are able to get into that triage of docs at the medical center.

Have a nice weekend!
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