Symptoms sound on target but once again I am no doctor. Are you stating that you have no atrophy or lack of coordination in your gait? Showing no signs of atrophy means nothing. Obviously since you run you keep yourself in shape. Cyclist shape, but good shape...:). If an MRI is not stating anything based on brain and/or spine I would pursue the LP so I could have an answer. Also with the gait, that means nothing either. MS folks normally have a couple of things in common--numbness, pain, dizziness, and uncertainty. Hope all goes well with you and best to you on what they find...
When I was originally diagnosed I was given two MRI's and a Spinal Tap....sorry for not posting everything in the original reply...
MS is a hard diagnosis. Only an Neurologist who specializes in MS could diagnose you. It is possible to still have muscle tone and coordination. There is a woman with MS who climbs mountains. Have they suggested a LP? It is what finally gave me my diagnosis. I have no dramatic symptoms at least none that can be seen. My reflexes are off. I did not even know I had neurological problems. I am still athletic. Then again it may not be MS.
It's quite possible that you have some nerve damage without disease activity. Paresthesia and numbness in the extremities could simply be an impingement on the spinal cord.
If you really want to be sure, get an MRI with and without contrast - this will show up new lesion activity.
However, without any evidence on the MRI to prove things one way or the other, I would skip the spinal tap. It's a lot to go through, and if it's negative, then you've gone through it for nothing.
Whatever this is doesn't mean I'm giving up. After my neuro suggested MS, I thought my running days were over. I took down my medals, my posters of the 2 Boston marathons I've run and numerous bib numbers I had displayed in my house. Today, I decided that I'm not giving up that this is not MS. It just has to be something else. I'm a new dad. I'm an athlete and I refuse to accept an MS diagnosis with such a remarkably clear MRI. I'm having a blunt conversation with the head of the radiology department tomorrow about the benefits of a contrast MRI. My original scan was on a T3 machine.
I did suggest a LP to my neuro but he asked that I get the gad MRI instead.
BornToLose - why so sure my symptoms are on target? My PCP says this could be trauma from various back injuries.
With that, I have scheduled an appointment with a MS specialist at UPenn. Not until October but this is the hand I've been dealt. A clear MRI (from what I've read) rules out MS in 95% of cases.
Welcome to the MS forum. The impact of running like you marathoners do, could really mess up your spinal column and cause tons of short-circuiting of signals. The training is brutal - my boss for 8 years is a marathon runner
Did the neurologist give you a reason why he was thinking MS??
I know this is a lot to absorb and being faced with the prospect of MS can be devastating even before you have a dx. Good for you to be proactive and follow your neuro's advice and move on to the next step of testing and doctors.
There are lots of runners with MS - and all sorts of other active sports too. Don't give up anything sooner than you need.
Honestly, I don't trust my neurologist. Luckily for me - one of my best friends is a doctor and she's been helping me out. She's an OBGY but she has connections that we're working on at the UPenn MS center. I understand that there is a slight chance of MS with a normal MRI but I'm seriously starting to doubt this neurologist. He won't refer me anywhere until I get the gad MRI.
This is all so frustrating but I know this is the card I've been dealt and I need to stay strong. I do not beleive that I have MS and if thats all I have right now - I'm hanging on to that.
Java, I have no clue. I am no expert. All of our symptoms vary, but everything you have described; I have felt. It could be anything. Like Lu said about the impact of running and such. I have MS, Java and I am athletic. I do BMX, road bikes, skateboard, and workout like a insane crackhead. Regardless of what you have, its not going to change your outlook; at least it shouldnt, nor is it going to alter what you do in your life. I hope that your's is sports related. If so then awesome. Hang in there and I hope for you the best which is nothing related to ms..:)..jason
Jason - I, too was a BMX junkie. Amazing how the sport has evolved since I was doing it in the 1980's.
Right!!!??? The tricks these dudes do nowadays is amazing. Hey you remember the old bear trap pedals back in the day? Talking about scars on the shins..hahaha. What did you have? I was and always will be a Redline guy. For my road bikes I have a Trek 1200 and a Trek Madone 5.2. The madone is freaking sweet....type soon...
I think you've got the right attitude - no reason to freak out just yet. Definitely get the MRI with gadolinium, and then you can move on from there.
Me, I was pretty sure I had MS six months before diagnosis - it was just a matter of getting the tests done.
I agree with jensequitur,
With all your marathon running, you could have some disk damage/nerve impingement that is causing the trouble. But it could be MS. It is hard to diagnose, and a lumbar puncture really is a confirming procedure after the MRI's.
I always thought my troubles with legs and other hurting, numb body parts was from all my years as competitive athlete, and it probably is due in part to that. However, I was diagnosed with MS last January. It took about 20 years of odd symptoms to get a confirmation.
Keep in shape and by all means keep moving. But watch out for overdoing it. You do not want both physical damage from too much training and MS if you can help it.
Good luck to you and I pray you don't have MS!
Have you had an MRI with a 3.0 Tesla or stronger? If your MRIs were only 1.5 Tesla, then, like Quixotic1, you could still have MS lesions that just didn't show up but which might show up on a 3.0 Tesla MRI. Also, do your symptoms worsen with heat? That is a peculiarly MS symptom. Hate to say it, but ALS can also present with symptoms like yours. B12 deficiency is another possibility etc. etc.
Lulu sent me this website for other conditions that can have MS-like symptoms:
As you can see, there is lots it could be.
Take a deep breath: It may be a while before you find out as those of us who have spent years in a horrid place we call "Limboland" can attest!!
Yes, my MRI's were done on a 3.0 Tesla machine. They were also read by a personal friend of mine that is the Director or Radiology. Clear as a bell. As my PCP put it - "It's probably the clearest brain I've ever seen." So I guess there is some solice in that. I doubt ALS a great deal because this has been going on for over 6 years. Besides - my EMG would have picked up ALS. It was normal in my arms and leg. ALS causes lower and upper nerve disturbances. I researched the **** out of that. I know 2 people that had it and one passed away within a few years. I would think that after 6 years - something bad would have hapened. It's been ruled out 100% on me. I just had a B12 shot the other day. My levels were slightly low being a vegetarian.
Good news is that I finally get to see an expert tomorrow at UPenn here in Philadelphia. An appointment canceled tomorrow at 1pm and they are sliding me in. He's not an MS doc but he is well rounded. Nervous - yet excited. I've been waiting for months to get into UPenn. It's great to have friends in high places. Yes, I agree that Limboland *****.
I'm running tonight after work. I don't care how bad I feel. I'll let you guys know how the appointment went.
Jason - I have a Schwinn Jay Miron now. I used to be a Haro guy back in the days. My MTB is a Schwinn Homegrown Pro. I was a flatland guy for a while but then we built a killer half in my backyard. We used to have a blast on that thing all summer.... Oh, the days...
Well, I got my answer. No MS. I have a B12 defficiency. Thank you all for your suggestions and comments. I wish you all the best of luck and will be donating to MS research.
Wow! I'm so happy for you that it is something that can be so easily resolved! Maybe that's what I have too. Maybe just trying B12 shots would be a good idea for me. I think I read that MS patients often also have B12 deficiency as well as vitamin D deficiency.
If the B12 supplementation does not improve your symptoms, you might consider getting a 3 Tesla MRI of your THORACIC spine. I noticed in your original post that you said you had MRIs of your head and cervical spine. Well, sometimes the MS lesions appear ONLY in the thoracic spine as was the case with Quixotic1 who founded this website. You might find MS lesions in your thoracic spine (if the B12 theory fizzles out). I'm surprised your team at UPenn didn't mention that. Also, you might have spinal cord compression somewhere along your spine, so additional spinal films could be helpful (only if the B12 supplementation doesn't work).
Hoping all your symptoms resolve soon!