Symptoms

[Ginosmommy]

Being newly diagnosed I guess everything to me seems like it could be associated and I always feel like running to the Neuro to make sure it's not a new symptom or something that was mis-diagnosed. I don't want her thinking I am a total flake and I know certain Neuro's don't feel that all symptoms of MS are actually due to MS.

For instance before she even diagnosed me my hands started shaking noticably, she said it was from the steroids that I had been on - but I had been off of them for over a week when I complained of it. I work with someone with MS and she says she has that happen a lot. I still have that feeling of my hands shaking but it's not noticable all the time.

So my question to you guys and girls is what are some of the symptoms that you know are associated with MS that you would not nessessarily run to the Neuro about? ie, things that are not a flare up but the stuff you deal with on a daily basis. (Like I know weakness in the muscles and fatigue are some of the most common)

The reason I ask - I was diagnosed with Tiezes Disease last year because I was complaining of a sore/tender chest, shortness of breath and trouble swallowing. They put me on Ibuprofen for the inflammation and said if it doesn't go away to come back, well it did clear up a little after about 2 months. Now all of a sudden I have it worse and when I asked the Neruo about it she said to go back to my PCP, whom I don't trust more than I can throw. I heard many of you explaining similar things and I was curious if it's just one of those things that will be sticking around?

[jensequitur]

My basic rule is that if it interferes with my daily life, I call the neuro.  Last time I called the neuro, I had this really bad spasticity in my left calf - the muscle kept spasming.

And my hands used to shake all the time, but it's gotten better as I've gotten over my last flare.  So I think your neuro was mistaken about it being from steroids.

What you'll find is that your neuro wants to invent reasons for your symptoms that aren't related to your MS.  This is peculiar, but they all do it.  I've gotten used to it by now.  I use the 3-times-a-charm rule - if I find three separate references on Google to a symptom, then I'll regard it as reliable data.

[Lulu54]

You are out of limbo, but are now in that great area of wandering and wondering, trying to get your bearings and living with this MySterious disease.  It will take you a while to figure out when it is necessary to call your neurologist.  

Keep in mind that symptoms that come and go are not something that most doctors want to know about.  It is those symptoms, and especially new ones that you have never experienced before and they last more than 24 hours, that concern them.  

If your relationship with your PCP is not a good one, then it is probably time to find a new doctor.  You will be spending more time in medical consulations, and many will be with your PCP.  You need that person you trust with your health to be a person you can feel comfortable with.  Obviously, you don't feel that way.  Please ask around and make the move.  I know that's not easy, because I had to do that too.  But it is so satisfying to now have a PCP who I feel comfortable working with on all aspects of my health.

I know next to nothing about Tiezes Disease - hopefully someone else will chime in here.

be well,
Lulu