Marathon Runner with neurological symptoms

[RunninGirl123]

Hi, I posted this in the Neurology community, but was suggested to repost the question here as well:

Here's the original post:
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Hi everyone.

I'm a 32 year-old female, married with two kids, and have been having some strange neurological symptoms lately.  

It first started back in December, when my nose started tingling and felt like it was "asleep".  I also was having problems with dizziness at the time as well, but since I'm prone to sinus problems I wrote it off as clogged sinuses.  It wasn't until January, when my fingers (mostly my pinky and ring fingers) on my hands, and my feet started all going numb, and I got some bouts of severe vertigo that I started to think I may have a problem.  In addition, my husband noticed about this time that I was driving strangely (I would swerve without any reason to).   It took me a week or so to get in to see my family physician, and by this time I was having muscle spasms/cramps all over in my body (my hand, tricep, calves, feet) over and over again.  There was a point of two days when one of my legs went almost entirely numb (my husband was pinching me as hard as he could and all I could feel was pressure, not pain, kind of like having an epidural) and I was having trouble even walking across my house because my leg wouldn't move right and it felt heavy, and these same two days I was having problems breathing and swallowing from time to time.

The doctor ordered a bunch of blood tests and an MRI of my brain (without contrast).  My blood work came back with the only thing abnormal was a moderately low (27) level of Vitamin D, but still within normal range (he now has me taking a Vit D supplement).  The MRI came back normal as well.

I went back to talk to the doctor last week, and by then most of the symptoms had improved for the most part.  He told me that because of the wide-spread nature of my symptoms (being that they were from my nose to my toes) that it was either a metabolic problem or a problem in my brain.  I could either take a "wait and see" approach, and see where the symptoms went from there or he could send me to a neurologist, as he was out of ideas.  I opted for the appointment with the neurologist.  My appointment with the neurologist is still a month away, and, after a few weeks of "good days" I'm back to having the tingling, spasms and vertigo again, along with a bit of blurred vision.

I'm a marathon runner and am currently training for the Boston Marathon.   For people who don't run marathons that might not seem like a big deal, but, for me, it is.  It took me several years of hard training, running 70 miles a week, to finally get a fast enough time to qualify to even run this race - there is no way I'm not running it.  I know it may seem trivial to people, but it's very important to me - being a marathoner is a major part of who I am - and I don't want to lose that part of me.  But the marathon is only two months away, my appointment with the neurologist is still a month away, and I'm fairly certain I'm not going to get an answer on that day - that more tests are in store for me before I get even close to an answer.  Is there anything at all I can do right now?  Would trying an antibiotic on the off-chance it may be Lyme Disease be worth it, in the meantime while I'm waiting?  Or maybe some of the medications for fibromyalgia (since I have a family history of that)?  I'm terrified that I never know how I'll feel in the morning when I wake up, and if I'll be able to walk across the house normally, let alone go on a 20 mile training run.

A bit more background info:  Cardiovascularly healthy, I usually run 40-60 miles a week.  Am a lacto-ovo vegetarian (but all my protein and Vit B levels did come back fully normal in the blood work).  Had a hysterectomy (due to endometriosis) 5 years ago, have been on depo estrodial ever since.  History of migraines (mostly triggered by hormones and heat - but really only get maybe 3 a year or so), chronic insomnia, and sinus infections (had turbinate-reduction surgery in 2007).  Low-ish blood pressure (my normal is usually right around 90/60).  Family histories of both fibromyalgia and ALS (Lou Gherig's).  I do, often times, run in the mountains near my home, so I'm sure I have been exposed to ticks - but I've never noticed one on me or seen a rash.

I've noticed my "bad days" are more prone to happen the two days following a long run or a hard hill or speed training run.  While I run I do tend to have more of the numbness, tingling and leg spasms happen, but I run through them.  I've also noticed an electrical shock feeling down my leg to my foot that happens occasionally when I run, that I haven't had at any other point.

And I did have another bout of strange things happening to me last winter.  Looking back on it now, I think it may have been related, but who's to know for sure.  Back then it was severe fatigue, and all over weakness, again with the nose tingling, and my husband said that I would confuse my words - things wouldn't come out the way I'd mean them - or I'd completely lose words in my vocabulary.  They did blood tests on me back then as well (all negative) and it was written off as Overtraining Syndrome.

I'm scared as to what this all will turn out to be in the long run - but I'll deal with it.  I know that all the testing I'll be put through will take time.  I'm just a bit panicked right now, for my own selfish short-term reasons, that probably don't make sense to many other people.  =)

Anyway... any advice from anyone?  

[RunninGirl123]

My insurance finally approved the MRIs and other tests last week.  I went and had the MRIs (full spine, with and without contrast, and brain with contrast) done on Wednesday.  I got a call from my neuro's nurse first thing on Thursday saying that the Dr. wants to see me ASAP - the MRIs had turned up something - but she doesn't want to tell me what until she sees me in person.  But she did say to tell me that it isn't "a tumor, stroke, or aneurysm".  Of course, their office was closed today, so the soonest they could get me in is Monday afternoon. =(  

Considering the urgency of the doctor wanting me in, I'm guessing the news isn't good - and waiting for 4 days to find out what it is is torture.  But at least it seems like there is an answer to be had, so I suppose I should be grateful for at least that.

I'm hoping it's something that would cause my symptoms and show up in a MRI, but could be fixed - like maybe a CSF leak or something - but I'm fearing that MS is a definite candidate.

[mrswillie]

If the people in your neuro office work hard at it hopefully they can get your insurance company to  pay for it. Maybe this new healthcare junk will actually help you get what you need if it passes. Good Luck. I hope you get some answers and some relief.

[RunninGirl123]

Thanks.

I actually had my appointment with the neurologist on Wednesday.  She said I had decreased sensation in both my feet and part of my back.  She told me that she is definitely concerned about MS, and also my spine (maybe a disc or a CSF leak) and wants to get MRIs done of my spine, and another done of my brain (with contrast this time), along with a lumbar puncture, balance testing, more blood work (including a test done for lyme disease).  She also did mention the possibility of it being a migraine-related problem, but definitely wants to rule out all of the other more significant problems first.

Problem is I just got a call from the doctor's office, and my insurance is refusing to pay for any of the MRIs and other tests - claiming them "unnecessary".  =(  The neuro's nurse said she's sending them files and is going to fight for me for it, but right now, who knows if I'll be able to get any of the tests done.  We already paid for the first MRI out-of-pocket (as our insurance deductible for the year), and really don't have thousands and thousands of dollars to get these things done. =(

[mrswillie]

You mentioned a history of migraines. Many of these symptoms can happen with migraines. Tingling, vertigo, mixing up and losing words all can come with migraines and migraine disorders. Your neuro will help you sort out if it is migraine, other neuro, or metabolic. Sorry that was not much help because you want an answer now but you will probably need to wait for your appt. Best of luck to you.

[Fishingaddict]

Sounds to me that you may have an electrolyte imbalance, esp since it happens after your hard days of training.

Most people don't get the RDA of potassium (4700 mg)- and many runners think that gatorade/sports drinks will help them, but in reality, it's only 35 mg per serving.

It's an easy blood test to get it checked.  I would get it checked when your symptoms are present.

[want2bik1]

My belief is that Neurological diseases are caused by toxins in our enviroment.  Hal Huggins wrote a book "Solving the MS Mystery" which explains this.  If you have a lot of amalgam (mercury) fillings this could be the problem.  If you are getting alot of vaccination (mercury) that could be the problem.  If you are living in a highly industrial area you might want to look at the air or water quality.  If you believe this to be the problelm you could get the book "Prescription for Nutritional Healing" which will recommend things you can do to help with the sympthoms you have.  The only thing I can suggest is look at the enviroment your body is in and try and eliminate as many of the toxins as you can.  A good diet of raw fruits and vegetables will give your body the vitamins and minerals it needs to deal with the toxins.  The book I recommended will give you a list of natural supplement which might help.  If you want a change in your health you have to change what you are doing.  Just have to experiment until you find out what works for you.