I feel like I'm insane..

[zenhound]

Undiagnosed, limbolander here. I've been having a variety of symptoms since Dec/Jan 2010. They've almost all been sensory to this point--numbness, pain, buzzing, vision issues. A few weeks ago I was lying on the couch when my left calf muscle seemed to tighten up out of nowhere and point my toes downward. I thought it was super weird but it didn't recur so I didn't think too much of it.

Then yesterday I walked from my apartment to the light rail station. Prior to this point, it has been warm enough for me to ride my scooter to work, but during the winter I use public transit. It's exactly half a mile from my house to the station, and in the past it's never been a problem. Around 8 months ago, a friend visited me and we walked all over the city with no problems (in fact he asked me to slow down as I'm naturally a fast walker). Well yesterday by the time I got to the station I was exhausted. And as a bonus, the calf muscle in my left leg had tensed up or seized up or something and was very tight and painful. Last night I had my partner rub it and he confirmed that it was really tight, but he said not to worry since it was a muscle issue and not a nerve issue. Today the same thing happened on the walk to the train.

So I have no idea. I saw my neuro a week ago and felt like things were relatively okay. She pretty much tells me not to worry and that the things that have been happening to me aren't indicative of anything necessarily. Then again she did say my leg reflexes were more brisk than those in my arms. She offered to do a nerve conduction test, but it just sounds so painful. My MRIs have all been clean. All blood work has been normal. I've been supplementing vitamin D, b12, and b6, and today found out that my B6 is too high (as a result of taking the B complex they told me to take, d'oh).

I just feel insane with this whole thing. I don't think I'm exaggerating anything. If anything, I think I am underreporting symptoms because of the whole stiff upper lip thing and also because if I've had a drink or taken a pain pill or anything unusual when something occurs, I toss it out. This leg thing and the being wiped out by walking half a mile... I dunno. I mean, I get that I'm not in great shape and don't exercise as I should. But I'm also 33, should I be winded by a half mile walk? This is all just so frustrating.

Anyway there probably aren't any good answers, I am mostly posting in frustration. I just wonder if a leg muscle cramping up like that after so little use could be a sign of MS, or is it just a sign I need to exercise more. Am I focusing too much on things and imagining things that aren't there? I don't feel like I can trust myself to be a neutral observer anymore. I'm not an anxious person, but all these things happening to me are quickly getting me that way. Arrrrggh.. I am glad I have therapy in a couple days!

[Ndobbins]

Thanks drsdonthelp & zenhound. Today is good so far. I pray the same for you two!
Nancy

[zenhound]

Well, I guess I should clarify. Part of the reason I'm not getting the nerve conduction test is that I'm a big baby, which I readily admit. The other part is that the neuro said she doesn't think it will reveal very much at this point. She says all the abnormalities I have are minor. I mostly agree with that, until this leg thing started. My plan was to wait until things were worse since maybe it would be more likely to show up on a test. Bad idea?

[RedFlame]

It looks like you are already received some great ideas and support.  I just wanted to reinforce when Audrey said about the nerve conduction tests.  They aren't painful at all.

Keep pushing until you find answers!

Red

[drsdonthelp]

I can relate to you both when you say "no one wants ms, but at least to have a lesion show up could explain everything." Some people might think that when you have a normal MRI be happy that you don't have lesions, BUT,, when you know something is wrong and nothing but an MRI that the docs. rely on so heavily is your answer,, then of course at the point you don't care if it shows up, YOU ALREADY KNOW!!! YOU JUST WANT TO MOVE ON WITH YOUR LIFE BEFORE SOMETHING BAD HAPPENS!!

I pray for you both that you get your answers soon! Nothing worse than waiting.
Pamela

[zenhound]

Thanks for the responses. It's definitely more of tired and not winded. Feels like oh my god I have to sit down before I fall over. And the left calf is extremely tight and painful. If I was just out of shape I would think the right one would be the same way, but who knows.

I can so relate to just wanting answers, Nancy. Every single test comes back normal normal normal. I wish there had been just one lesion on the MRI so I would be able to tell myself I know what it is and move forward (even if the neuro disagreed). How sick is that, lol. I too don't want MS--does anyone?--but it seems like that's one of the last options yet there's no evidence for it.

Bob I'm at Kaiser unfortunately. They don't have 3T MRIs or MS specialists, so that's fun.

I haven't had much in the way of balance issues. (I feel like I should add "yet" to that...) A couple of nights, back when things first started, and I was out walking the dog, I felt like I was unpleasantly drunk and was going to fall over. But since then nothing.

The dog brings up another point, which is that I walk him 3-5 times a day and never get exhausted. I guess maybe because he stops every few feet to sniff. I suppose the sustained effort is the difference.

[Ndobbins]

Meant to tell you in case you couldn't tell, I am an undiagnosed limbolander too. My husband gets edgy when mention MS. Honestly I don't want it but just want to know what the heck it is so I can do something to stop it! Just an answer & not another test!!!!

Nancy

[Ndobbins]

We could start a club!

I have a lot of the same symptoms you have & same frustration with the neurologist.

I actually starred going to a chiropractor hoping it was a pinched nerve causing the neuroapthy in my feet & legs. Still no answers.

The nerve conduction test isn't that bad or maybe my legs are so numb I just couldn't tell. Walking is challenging & I know my body is stiff from fear of falling.

Sounds like you are having muscle cramps. Mine happen out of the blue & can be very painful.

Take care,
Nancy

[COBOB]

Tightness....My right calf spasms so bad by foot pints straight down. I actually tore a muscle in my calf according to my GP.

Bob

[huff1711]

I haven't experienced tightness with my symptoms. Only leg issues I've had was weakness, tingling, numb, and each leg wanting to walk in front of the other like I had been drinking. Also them giving out on me if I did a lot of walking. It's like someone just chopped them out and I'd go straight to the ground with no warning.

Chad

[COBOB]

In my case I resort ti wall walking because my legs give up.  I can still get 10 miles on the recumbent bike.  Walking seems to take more energy because of maintaining balance.

Bob

[Audrey_M]

Are you winded or tired after your walk? Could be an important distinction.

The nerve conduction test sounds scarier than it really is. Given your symptoms and the fact that your neuro brought it up, I'd go for it, as it is just another tool in the diagnostic kit.

The other part of having the test done is that if tests run so far by your neuro aren't giving her anything to help towards a diagnosis, she is using her best judgment in terms of appropriate tests. If you feel that the test is not appropriate, then part of a good relationship with your doctor is to ask that question. If you are nervous about it, be honest with her and express that so that she can hopefully calm your fears and explain how this will help aid in the diagnostic process.

It's a two way street with doctors, as in any relationship.

Hope you find some answers soon.

Audrey

[COBOB]

I'm kind of in the same boat as you (but a little older - 48.)   My partner and I have been known to walk all over down town Denver.  Of late, some of the walks seem to take it out of me.   I have had pretty much sensory symptoms, including Optic Neuritis and Trigeminal Neuralgia.  At least in the case of the Optic Neuritis, the VEP proved something was going on.  My first MRI had only one lesion.  I have the buzzing in my feet and in my left arm.

Not sure who you are seeing, but I'm being seen over at CU HSC.  Part of the Rocky Mountain MS Center is there.

Bob