Looking for some opinions and advice

[bmxtuffy]

Hi. I am a 40 year old father of two who has not yet been diagnosed. I have never used a forum before, however my wife thought it might be a good idea in order to get some feedback. I really want to be as open as I can about what's been happening to me as I feel that will get me the best advice. Two years ago I was diagnosed with a primary anxiety disorder which I finally got under control in May of this year. I was going to the gym, enjoying a new job & had lost some weight. In June I was diagnosed with sleep apnea & began using a CPAP machine. A few weeks later I began to experience dizzy spells (which I have never had before) & suffer from cognitive difficulties. I was having trouble remembering things, focusing & it felt as if my brain was shrouded in a fog.

After a couple of weeks of enduring this I went to my GP & was told that my blood pressure was low (I used to have hypertension) & I should stop taking my BP medication. That was all good news until my dizzy spells & cognitive spells continued. Long story short... I ended up in the hospital for a week & was diagnosed with Orthostatic Intolerance. A week after coming home both of my calves began to ache all of a sudden (it came from nowhere) then three days after that the aching dissapeared & suddenly both of my feet began to buzz. The buzzing has never left me since & my legs ache pretty much all of the time. A couple of weeks after the start of the buzzing and aching I was told that I have restless legs & periodic limb movement disorder & was promptly put on Neurontin. Things only really got worse after that. Two weeks ago the brain fog that I had suffered in July returned (it was so bad that I really couldn't do my job effectively), i also noticed a fasciculation in my left arm, which has now progressed to all over my body (legs arms & back). In addition to that my right arm has spasmed twice as I was drifting off to sleep.

I saw my GP & Sleep disorder specialist the other day & they both mentioned the possibility of MS. I had an Brain MRI at the hospital in July when all if this started, which was normal. I have also recently had an EMG on my feet which was again normal. I am having blood tests done & I'm scheduled to have another MRI in two days. I am acutely aware of how powerful anxiety is & understand fully it's affect on the body. However what I am experiencing is different & I know that somethings just not right. I am trying to be pragmatic about what's happening & would appreciate any feedback. Does what I have mentioned seem typical of early MS? Do feet constantly buzz & legs ache? Do my earlier MRI & EMG results bode well for me? Are cognitive difficulties common early? Are body wide fasciculations common? My arm spasming as I was falling asleep also concerns me. Is that also a common early symptom? Any advice would be greatly appreciated as my wife & family are incredibly concerned for my well being. All the best & kindest regards. Rob.

[Heta78]

Sure sounds like some of the symptoms I have experienced. My anxiety was off the chain when I was first diagnosed. To the point where I had major panic attacks when I was in stores (especially crowded ones or those with florescent lighting). I had dizzy spells where I felt like if I didn't focus really hard on not passing out, I'd just fall over. Cog fog is also a common symptom. Did they perform an MRI of your spine as well? My lesions are only in my brain but I know some who only have them in their spine. Have you had a spinal tap?

Unfortunately the "be your own advocate" mantra is very necessary. Be persistent until you get an answer. I was lucky and was diagnosed within a month but my first exacerbation was major and definitely pointed to MS right away. The tests were mostly done as confirmation. But, Rob, keep in mind that we're all very unique with MS and I've yet to meet two people who's stories are identical. There's a good chance that you'll get this all figured out and if it is MS, it is not always the most awful diagnosis. I've learned to live with mine and 3 years later, feel really wonderful these days. Most of my coworkers have no idea that I have MS and even my closest friends forget because it's fallen into the background. If you want someone to chat with about it, send me a message and I'll give you my email address. I don't check these boards often, I was just on here searching to see if anyone else had issues with episcleritis (redness of the eye) and saw your message. Keep yo' head up!

[lyndacarol]

I am having blood tests done & I'm scheduled to have another MRI in two days.

Welcome to ThisIsMS, Rob (bmxtuffy). You asked for "any feedback;" here is mine:

Your symptoms are common to many conditions, MS is only one possibility. The other more likely possibilities must be ruled out first before an MS diagnosis can be made.

Concerning your blood tests… I suggest you request your own copy of any test results so that you have the actual number results. (My memory often fails us. It is useful to have the actual numbers.)

Thorough screening for a possible B-12 deficiency (one of the possible causes for your symptoms) should be among the first blood tests your doctors ordered. This should include (1) a serum B12 test (or the newer, more reliable HoloTc test), (2) RBC folate test, (3) a serum homocysteine test, and (4) a methylmalonic acid test (many experts consider the urinary test form to be more accurate than the blood test). The outdated serum B12 test alone is not adequate to uncover a B-12 deficiency. (Also, do not take vitamin B supplements before testing as this will skew test results.)

I highly recommend this 50-minute documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their latest book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)

Please notice that "Orthostatic Intolerance" is in the list of Signs and Symptoms at the end of the video. Your other symptoms are in this video, too.
We wish you all the best. Please let us know how it goes.