Hi again,

I have so many questions, but i guess that's what this forum is all about!

I have no dx, but MS is slightly suspected.

I have 2 questions please!;

1) when you come off oral steroids, even when at the end, do your symptoms come back straight away?

I've been on a low dose, and I have 3 days left on quarter of a tablet.
The pins and needles are back today already and my pinky has gone numb like it usually does pre-steroids.

2) It seems like my ' sensory thermostat' is not working. My hands and feet felt like they were burning up earlier. My kids felt my hands and they were hot, but my feet were cold!
Sometimes when my feet are hot, I can feel the really cold tile floor with my 'good' foot, but my 'bad' foot can't feel the cold - it's just warm-ish.

I can also feel cool in bed (it's winter here!) but then my legs feel like they're burning and are hot to touch.

My symptoms always get worse with heat (bath, in bed, heater on too hot, and once even doing the dishes!!)

Des anyone else have these things going on, and are they MS-like symptoms?? (I know the heat-making-it-worse thing is).

thanks,
Michelle

Welcome, Freesia/Michelle!

Wow, sounds like you could be flaring!

I've only been on steroids once, but the sx did not come back immediately.

Might be time to see a neuro if you haven't already. Good luck to you.

My symptoms did not come back after oral steroids. I was working towards the end of a relapse. However, some do find their symptoms increase or get worse before improvement is seen...if improvement is seen.

Steroids are not helpful for sensory symptoms. Many neuro's won't even prescribe steroids for sensory symptoms, they either won't help or only offer temporary relief.

I have had many times where my feet are freezing yet my husband will feel them and the are warm to him. I rarely go barefoot, the floor as well as the carpeted areas can feel cold on my feet which will actually cause pain.

There is also the possibility of residual symptoms or symptoms that come and go.

Your symptoms could be MS related, however, there are numerous disease/disorders which could also cause those same symptoms.

My MD wont do oral steroids. He will only do IV steroids.

I am sorry that you are continuing to have an issue, but if you are in a true flair you may need bigger help than the pills. I would make an appointment with your MD and discuss it.

I am one of those that roasts in bed at night. I get way hot, and am miserable. I have done this since I was a kid. anyone who slept beside me claimed it was like sleeping with a furnace. I do find that when I am in flair, I am incredibly sensitive to heat, including my own. I cant iron, wash dishes, or walk to the mail box when its hot and I am in flair.

I would make an appointment with your MD.

I HATE this stupid disease.

I hope you feel better

Never been on oral steroids. Sorry I can't help you with that question.

I have the broken thermostat problem too. We have sweatshirts and blankets stationed for when I get chilly. Been debating for a long time whether or not to get slippers for when only my feet are cold. I have a tendancy to overheat when I do stuff like dishes. I'll sit under a fan for awhile to cool off, and then I get cold.

Sounds like your "bad" foot is experiencing a decrease in sensation. That is the numbness I have. Sometimes I can't feel the difference between hot and cold. We have a mark in my shower of how far to turn the knob so I don't get the water too hot since I also experience this in my hands.

Definitely talk to your doc about this. Hang in there.

I have had IV steroids twice about 4 years ago. Symptoms never went away but it might have stopped a bit of the progression.

Don't stress about it, give it time. If you are on an exacerbation, you need to ride it out. Keep a diary about what is happening to document the symptoms and in a week, call the neurologist for another appointment.

Self diagnosis is not good and doctors do not always handle neurological problems quickly. You are a unique person. MS is not necessarily an easy call for a doctor. Sometimes it needs time.

I am sorry you are going through this. I wish there was a good answer. Ask your doctor for something that may help the symptoms, like neurontin.

My hope is that once you document your symptoms, the doctor will be better able to figure it out.

Like Aarcyn, I have only been on IV steroids 2 times in the past 3 years. In fact, I have only been on IV steroids twice since being diagnosed 3 1/2 years ago. I did not notice a decrease in symptoms right away. It still took a while for the symptoms to calm down.

I don't have the internal theromstat issue so I have no advice for you on that. The sensory issues I do have and for me, the Neurontin helps that for the most part. However, I have burnt my left hand/arm several times without feeling it and had a big delay in the message reaching the correct part of my brain. I can't feel hot/cold accurately with my left arm/hand (but I can definitely feel a pin prick).