Avatar universal

Marathon Runner with neurological symptoms

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?  
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Avatar universal
consider spontaneous spinal headache for unusual neurologic symptoms.
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Avatar universal

I'm so sorry you're having to go through the same thing I did. =(

Let's see... an update.

I did run the Boston Marathon.  I was okay during the race. =)  I mean, it was definitely hard, and I had my hand go numb the whole race and some muscle spasms, but I made it through. ;-)  It was a wonderful experience.

When I got home I had the spinal tap done, and it turned up kind of inconclusive.  I didn't have the O-bands one normally has with MS, but did have a high level of proteins in my spinal fluid.  My neuro told me she was classifying it as an isolated event.

When I was waiting for the spinal tap results I made an appointment with an MS specialist (my previous neuro didn't specialize in MS and I figured if the tests came back positive it would be better to have a specialist). I decided to keep the appointment, just because it's better to be safe than sorry.  The specialist did an evaluation of me, and took my medical history and she and her nurse practitioner both felt that even if my spinal fluid didn't come back with the O-bands that there were too many things going on with me, and at different time frames, to have it be an isolated event.  The neuro told me that the dizziness, vertigo and cognitive problems wouldn't have been caused by the lesion in my spine, and she was certain I was having problems in my brain that the MRI just wasn't picking up for whatever reason.  She told me in her opinion that I have MS, even if she can't clinically diagnose me with it yet, but that she's "virtually certain" I'll be officially diagnosed with it within the next few years.  

She recommended that I start on the disease-modifying drugs, and had me do a round of IV steroids.

I've been on Avonex for a few months now.  Hopefully it will help in the long run.  I'm still having problems that come and go.  Lots of numbness, but thankfully the pins and needles, tingling, crawling sensations have stopped (they have me on amitrytaline for that), and I still get muscle spasms occasionally.  And I just had a check-up with the specialist again today, and it seems that the earaches I've been plagued with over the past few years are probably MS-related as well.

I seem to get a lot more tired when I run now. Since running is such a mental sport, I'm not entirely sure how much of it is really physical and how much is mental.  More than likely it's a mixture of the two.

I'm still running.  I'll be running the New York City Marathon in November, then I have the Boston Marathon in April and Big Sur Marathon in May.  The doctors have all told me to keep running - that it will keep me healthier longer. =)  But they also said to make sure that I stay cool as I run and to not push as hard as I did before.  

So, Tammy, keep on running.  =)  You can do it.  And keep your spirits high.  No matter what it turns out to be - marathoners are strong, and strong-willed people.  You'll make it through it. =)

Best of luck to you with finding out what exactly is going on.  If you ever need someone to talk to, I'm around. ;-)
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Avatar universal
hello, my name is tammy and you could of been writing this about me.  i'm also a marathon runner i'm 35 yrs old and have to young girls and have been expreincing numbness that has spread to all my limbs and head.  when i run i can feel it go number expecially on my arms.  i get really dizzy and also have eye problems for example car lights hurt my eyes so i wear shades even a night.  i'm also lacto-ovo vegetarian.  all my blood work has come back normal and my mri has also come back ok but with no contrast. my speach some times comes out wrong.  did you do the marathon and were you ok i also have a marathon coming up next month and want to run it.   can you pls let me know what you have figured out so far. thankyou, tammy
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Avatar universal
hello, my name is tammy and you could of been writing this about me.  i'm also a marathon runner i'm 35 yrs old and have to young girls and have been expreincing numbness that has spread to all my limbs and head.  when i run i can feel it go number expecially on my arms.  i get really dizzy and also have eye problems for example car lights hurt my eyes so i wear shades even a night.  i'm also lacto-ovo vegetarian.  all my blood work has come back normal and my mri has also come back ok but with no contrast. my speach some times comes out wrong.  did you do the marathon and were you ok i also have a marathon coming up next month and want to run it.   can you pls let me know what you have figured out so far. thankyou, tammy
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Avatar universal
You go girl!  I am happy you are doing what you enjoy while you are going through a difficult situation.  Hopefully everything will work out for the best for you.  STAY STRONG.  
If it is MS sounds like it is in an early stage.  We will just have to wait and hope for the best.  

Please keep us posted.  
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464076 tn?1371537417
Good luck and I hope you win the marathon.  I am also going through the same issues as you and waiting for doctors and tests. Saying a prayer for a good prognosis for you. God bless.
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Avatar universal
An update:

I had my appointment with the neurologist.  The MRI showed a lesion in my cervical spine - basically as high up as the spine goes.  Right now they're classifying it as a "isolated demyelination event" or "clinically isolated syndrome".  They drew more blood from me to check for ANAs that can indicate an auto immune problem, they're also testing the blood for lyme as well.  I have an appointment scheduled for a spinal tap to check for proteins and other stuff as soon as I get back from running the Boston Marathon - the neuro didn't want me to have any chances of side effects from that ruining my race and said it wouldn't be any harm to wait two weeks to get it done.

Anyway... so as it stands now I'm still in a waiting game I guess.  Is the lesion an isolated fluke thing, or is it just the first of many and an eventual diagnosis of MS???  Who knows.  I guess we'll have a few more answers when this next round of labs all come back.
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Avatar universal
I am so sorry you have to wait to get news that probably does not sound great.  Try to relax until then.  From reading your information your symptoms sound suspicious of MS.  Of course I am just guessing.  Or it could be something the physician wants to under control before there is a big problem.  Thank goodness your insurance came through for coverage.  

Please keep us posted.  You are too young for all of this, but you sound like a very strong person, mentally and physically.    

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Avatar universal
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.
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Avatar universal
So I 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. =(
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Avatar universal
Keep us posted.  Hope you get your answers soon.
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Avatar universal
Thanks you guys. =)  I hadn't thought of calling the neurologist's office to check for cancellations.  I will definitely do that.  Great idea.  I also had another person tell me that the symptoms can are similar to those she had with a CFS leak and she suggested I get an appointment to be evaluated by a physiatrist (I had never heard of this type of doctor before that point) while I'm waiting to see the neurologist, because he may be able to offer some more direction, so I'll try that.

I was unaware that you needed the contrast to see MS lesions.  =(  Considering that my symptoms are closest to those of MS that's a bit upsetting that my Dr. didn't order them with contrast then.  And, yes, I also wondered why he hadn't ordered one of my spine as well.  Hopefully this will be something that the neurologist will check first thing (and hopefully our insurance will cover it - it wouldn't shock me a bit to have them tell us they already paid for an MRI and won't pay for another...).

I think I'll call my family practitioner doctor and ask him about getting tested for Lyme Disease and possibly getting an antibiotic on the off chance it may be that.  I'd hate to go through months and months of this only to find out way down the road that it's Lyme Disease and can be so easily resolved.

I've never heard of Myasthenia Gravis - I suppose that's a possibility too - as I suppose guillain-barre syndrome could be as well.  And I'm sure many other things as well.

Yes, I'd love to hear back the reports from your doctors.  Thanks so much for your input and I hope the best for both of you.  I'll let you know what turns up. Oh, and thanks for being so understanding about my slightly crazy running desires. =)
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Avatar universal
That is how it started for me; having alot of the symptoms you are having.  I had started getting back into shape, etc. and all of a sudden back in August 2009 I started getting all these strange symptoms.  I was checked for Lyme's, first MRI brain with contrast was ok, ENT testing was clean, etc.  I thought to myself something is wrong and they are not looking in the right direction.  Finally, I requested from my Family physician an order for an MRI of my cervical spine and another MRI of my brain.  Guess what, I have a herniation c4c5 level with possible Chiari Malformation.  I will see a NS in March.

I can COMPLETELY understand what you are going through.  You take pride in you physical fitness and love running.  If you are an independent person and something like this happens it is like snuffing your life out.  You are not being selfish; you just don't want anything getting in the way you want to live your life.

Try to bump your NL appointment up.  Given your family history, you definitely need a thorough assessment.  Meanwhile, your family physician can test you for Lyme's and other blood work.   Make sure you are getting an MRI of brain with CONTRAST if it is repeated.

Keep us posted.
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Avatar universal
I have been having some similar symptoms for about 6 months.  I had a strange sensation/phantom taste in my mouth and dizziness/vertigo at first.  Then I started having blurry vision along with other strange visual symptoms- flashing lights, "tracers," and difficulty focusing on one object for longer than about 3 seconds.  I have strange sensations on the left leg, arm, neck, and back, like an electrical pulse (that goes along with my pulse), and sometimes just a slight weakness.  I never had numbness like you, but some days it's difficult walking up stairs.  It feels like I'm dragging and my legs just need a good stretch or something... but, that never actually helps.  My left hand and left foot have had tingling episodes. I also have a lot of upper back pain, bilateral leg pain in the back, and headaches every morning (feel like sinus headaches).  I also have good days, but it's only like 1-3 days in a row, then i'll have a lot of bad days in a row.

I'm 26, F and also used to run a lot (not near as much as you). I was running 4 miles 3 times a week.  I'm tall, lean, and usually eat healthy. no drugs or smoking. So, I understand how devastating it is to not have the normal ability to exercise and be as active as you want to be.  I just don't feel like exercising anymore, although I notice my symptoms are better for the rest of the day when I have a good workout, but then they come back with a vengeance that night or the next day.

I was referred to a neurologist despite having a normal in-office neuro exam with my family practice dr (you know, where they ask if an object is sharp feeling, and test your grip strength).  The neurologist ordered an MRI with and without contrast and a Visual Evoked Potential.  I don't have the results yet, but I'll keep you posted if you're interested.  

Also, I would call the neurologist office once a week and ask if there are any cancellations and see if you can get in sooner.  I couldn't wait a whole month!  

After doing a lot of research, I came up with some options for my symptoms that you might want to inquire about with your neurologist:

Multiple Sclerosis- this is I'm assuming what you had the MRI rule out, but I'd be concerned why there was no contrast.  You need contrast to see the plaques, which could be really small...also, you could press for an MRI of your spine, since plaques can happen there.

Myasthenia Gravis- the eyes and limbs can be affected, but numbness/tingling are common symptoms.. so, you might want to mention it.  Although, I couldn't bring myself to mention any possible self-diagnoses to the neurologist, because, I realize he would probably get angry with me and assume I'm a hypochondriac looking up everything on the internet! which, of course, anyone with weird symptoms would do, but it just looks bad to a physician for some reason. which is why i like nurse practitioners better =)

Fibromyalgia- apparently it can cause some strange sensations and visual disturbance. since i have unexplained pain, this is more likely for me... i don't think this fits for your description though, as you have marked numbness, which should not be a symptom of fibromyalgia..  

B12- obviously this was ruled out for you, as it was for me too. but, it could have been.

Lyme Disease- I tried an antibiotic and it did seem to help with some symptoms- like, some of the neck and back pain went away, along with some sore throat flair-ups I was having.  but, nothing else went away.I had gone camping and my dog had a massive deer tick infestation around the time my symptoms started, so I thought this may be related.. but, I never had a rash or saw a tick on myself. I took the antibiotics, but like I said, my improvements were slight, and really were probably totally unrelated to my neurological symptoms.  I think this would be worthwhile for you to try. Also, you can request a blood test to look for lyme disease.  I didn't do this.. but, if my MRI and VEP are negative, I'll ask for one.   http://arthritis.webmd.com/antibiotics-for-lyme-disease

Lastly, some odd metabolic problem could be causing it.  I have a history of IBS-type symptoms so, i could be just having odd issues somewhere.  Certain foods seem to trigger my disorientation/dizziness more.. I don't think it really could be responsible for visual symptoms.  But, a metabolic issue like that would be really hard to track down, so the easier route is to make sure the primary problem isn't neurological... then, if you get the other things crossed off, try out this route.  That's what I'm doing anyway.

That's some advice.  Hope it helps.  Update us.

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