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Questions about heat intolerance and spasticity, etc.

Hi everyone, I saw an MS Specialist on Friday, and he is pretty sure I have MS. But my MRIs were done without contrast, so I have to have the contrast done before he will make the official diagnosis. He said if I have even one enhancing lesion anywhere on my brain or spine, the diagnosis will be made.

For the most part, my symptoms fit the MS puzzle. However, I have two questions (I plan to talk to my neurologist after my MRI's with contrast are done, but wanted to hear some experiences from the MS community as well):

1) Heat Intolerance - my symptoms are definitely worse in hot weather and high humidity, and I've noticed I really don't tolerate the summer weather lately. However, I've also heard that people with MS can't usually take hot baths or showers either, but for me I don't have a problem with hot showers - does this mean I don't really have heat intolerance?

2) spasticity - I have had a problem with my trapezius muscle, neck muscle, right arm, and right side of back (and my right calf muscle to some extent) being in a CONSTANT state of rigidity. They are hard as a rock, and it doesn't just seem like tightness or knots, like they are truly always in a flexed state. Nothing helps. My neuro said MS can cause this. But every time I read about MS spasticity, it is really described as the legs and arms only. Does what I have sound like spasticity, or does anyone have something similar?

3) and a last one - how many people with MS get optic neuritis? Are there people with MS who dont have optic neuritis? My eye exams were normal, although I have had blurry vision a couple times when I got overheated.

Thanks in advance!
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Avatar universal
Hi and welcome to the forum.

I don't understand your needing to have an enhancing lesion for an MS diagnosis. Or at least I don't understand your needing to have one now. An enhancing lesion is new--maybe 30 days old or less. If you've had an. MRI where a lesion that shows now was not apparent on an older MRI, then that demonstrates that you have dissemination in time, meaning that your lesions have appeared at different points. That's one criterion for an MS diagnosis. You already have another, which is dissemination in space, because you have more than one lesion. But anytime you have more lesions than at a previous time, that fulfills the criterion. It doesn't have to enhance. I personally have never had any enhance, though I've had increasingly more lesions, and that's likely just due to the the timing of the many MRIs and the luck of the draw.

As to heat, possibly showers don't bother you because a part of you is always cooler, not being in the direct line of hot water. Otherwise I don't have an answer for you. But not every MSer has heat intolerance.

And I have never had optic neuritis, though I've had MS for quite a few years. ON is often but by no means always an early symptom of MS. I had visual evoked potential testing that showed a problem with my right eye, but I've never had pain or any other eye symptom. MS is a disease of the central nervous system, which is a big place to say the least, so the things that can happen are many. No one has them all, or even most of them, I'm happy to say.

ess
Helpful - 0
11305938 tn?1417998533
When diagnosed I had not had ON. I did get it on my most recent relapse and went blind in my right eye. Over time it improved but I am still legally blind in that eye.

I also suffer from spasicity but it was a more recent symptom as well. It is very pronounced in my right leg and I have trouble crawling into bed because it won't bend and other things similar.

My neurologist prescribed baclofen to help but it really just depends on the day and time.

Heat intolerance iis a problem for me. Usually it takes a bit of time bbeFore I am affected. For me though my legs don't work when this happens and I am paralyzed from the waist down. This is in extreme cases or when I have an infection.

I used to be able to handle baths as long as I didn't stay in for more than 15 mins or so. Thhe last time I overstayed my welcome and my legs stopped working and I couldn't get out. After an hour annd many attempts I was able to roll out and pull myself to my living room. ALL you can do iis take everything in stride. Everything is so unpredictable and out of our control. We have to learn to adapt and realize that we can't control every situation.

All the best,
Bbarb
Helpful - 0
Avatar universal
Hi there, I have never had an MRI with contrast and still got my diagnosis after one MRI of the brain only so I am not sure why your neuro needs an enhacing lesion.

I did have 2 attacks, brain lesions in numerous sizes in about 4 different places as well as many o-bands from my spinal tap have you had a spinal tap?

As for heat intolerance mine can be brutal but mostly warm showers and baths don't hurt me unless I am overheated to begin with.

I have neck issues but not sure if they are related to bicep spasticity and I did have a new small disc protrusion at c 5-6 so that might be a better reason for my neck issues.

My presenting symptom was vision related but not optic neuritis and 2 years later I still haven't had it.

Best of luck,

Corrie
Helpful - 0
1831849 tn?1383228392
Hi MC

As ess said, it's likely that your doc is trying to satisfy the dissemination in time component of the McDonald MS Diagnostic criteria. I tays that for it to be MS you need to have at least 2 attacks, at least 30 days apart. All lesions will show up without contrast. In the presence of contrast active lesions, including those that have been active i the last 30-40 days, will light up. If you have some lesions that light up and some that don't you meet the dissemination in time criteria. Without contrast you would have to wait a minimum of 40 days, have a second MRI and look for additional lesions v. the first MRI.

ON is not a requirement for MS. I've had MS for over 20 years and have never had ON. For other reasons, my optic nerve is examined at least once a year. There has never been anything wrong with it.

Heat intolerance is, like everything else related to MS, a personal experience. I'm in your category. I love taking hot showers and they have never caused me any problems. On the other hand, if I walk for 30 minutes or so my core temp rises to a point where my legs stop working. It doesn't matter whether it's 90 or 32 out. It's my internal core temp the determines my heat intolerance.

You spasticity is more proof that we all have our very own version of MS. Words like 'typically' and 'generally' are included in lists of symptoms because no 2 of us have exactly the same disease :-)

Kyle
Helpful - 0
14636444 tn?1435609335
I am like you my spasticity is really bad and it is mostly in my neck , back and arms.
When I wake up in the morning my muscles are so tight I have to roll out of bed and begin to move very slowly.I find valium and baclofen works but does not help with the fatigue also get a lot of migraines I take Relpax for that. I can take a hot shower but not a bath, never had much problems with my eyes compared to others with ms. My problems are mostly pain ,stiffness,and exercise intolerance. Mowing the lawn for 20 min makes me feel like I went a round with Mike Tyson .I have to make sure that what ever activity I do whether its walking or fishing I have access to something to reduce my body tempeture like a swimming pool or ice packs.I keep my house air conditioned at 67f that helps a lot.
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