Love the Dr's response

[Tracelyn]

I have been on Gilenya for 8 months and at the last visit she told me to let her know if I have any changes in symptoms.

Well lo and behold I started experiencing the phantom vibrating on my left side below the waist and above the knee. It kept happening for a few weeks and I finally sent her a note to let her know.

I get a response back asking me 3 questions
1) How is my glucose levels? ( I am not diabetic)
2) Did I quit smoking yet? (Nope, not yet)
3) Am I taking my D3? (I am still taking it)

So I respond back to her with my answers. Exactly as she asked them.

I get a final response saying that well smoking is not good for MS (heck, smoking is not good for anything), and she increased my D3 dosage.

No other responses... nada.
I am now having problems with spacisity in my left foot, where the big toes point straight up and the other are pointed down. If feels like my food is trying to fold in half in the middle long wise.

I know there are many things that are not good for me, and smoking is bad. However a nervous breakdown is not going to help my MS either.

I lost my mother in December and I am struggling to maintain my household and take care of my Dad's. I work full time and am very active with my grand children.

If they do not listen to me at my appointment on Monday I might just go postal and let it fly. I am not seeking drugs.. I was taken off most of my medications in the past 18 months. I now only take zanaflex, gilenya, D3 for my MS. I do not want more meds, but I do want to be prescribed steroids when it is obvious a flare up is occurring.

[onlyairfare]

Were you asking the doctor if you should be prescribed steroids? Had you mentioned anything about glucose in your note to her?

This isn't clear to me from what you wrote, so perhaps it wasn't clear to your doctor, and thus her response to you was unhelpful.

I do hope that on Monday you get the answers you seek. Please let us know how your appointment goes, and I hope you feel better soon.

[BigA]

Stop Smoking. It's one of the few definite things we know about MS - that smoking makes it worse. You'll look old before your time too... and stink... and waste a lot of money. There's just no way to get around it. Get addicted to the gum or vape - anything is better. Please.

[fishead]

Yes the smoking is bad for you....BUT your Doc needs to take care of some more important issues... stinking is not a crisis situation!!

[pennstater]

Some neuros don't like to prescribe steroids for sensory symptoms. Is yours one of them?

Hope you feel better soon.

[pshrink]

Hi Tracelyn
Saw your original post, and one thing leapt straight out at me: a big toe that points straight up can often be the sign of a spinal problem.
Take a look at "Babinski's Sign" on Google, etc and you will see what I mean.
Don't get it mixed up with Babinski's Reflex - which some people manage to do.
Either one of these is a clear indication of a neurological problem, and needs the appropriate specialist - not a General Practitioner.
G

[Tracelyn]

Either one of these is a clear indication of a neurological problem, and needs the appropriate specialist - not a General Practitioner.
G

The doctor is a MS Specialist. It just bothers me that she herself told me to contact her with any changes..to respond like she did.

[Tracelyn]

Thanks for referring me to the info on Babinski's. That is almost exactly what I am experience with my left foot.

I had no idea how to really explain it.

[tl-tr3]

Sorry

about your symptoms you are having.
My experience has been that steroids are RX'd to restore function. I avoid them as a last resort.
Plus they have same side effects & a few extra as the symptoms they are prescribed to treat.

[Tracelyn]

I am with you on hating steroids!

However, just afraid of any progression of this darn disease. I have been stable for a few year and seems like since I went on Gilenya things are changing. However, that could also be due to the stress I have been under since my mom passed away in December.

[angel22_99]

One of my biggest pet peeves about this freaking disease is how hesitant EVERYONE (even me) is about attributing problems, especially obvious nerve problems, to the neurological disease that we have been diagnosed with.

Now before everyone jumps in and says things like: You can still have diabetes, plantar faciatis, whatever, and MS too...I know...but if you have been diagnosed with MS, treat it like a part of the disease first and if it doesn't work, look elsewhere.

I told my neurologist at my last appointment that my knees and ankle joints have been feeling stiff lately...so he said that maybe I have arthritis...at 39?!?! He says, yeah, you are a little young...WHATEVER!

Drug seeking? I have my next neuro appointment Thursday and you bet your sweet bottom that I'm going to be asking for some drugs (I am on Gilenya too, by the way). When I over-do it during the day, I get these extremely painful electric shock pains in my feet running up my legs at night. This usually starts right as I sit down and try to relax--it starts a vicious cycle. I'm sure I will get the oh, it's not your MS, it's X, Y, or Z. I am going to tell him that I don't care, make it stop.

Oh, and about your smoking, tell everyone to go to heck I am overweight and everyone tells me how my disease will get better if I lose the weight. I'm sure if you could stop smoking you would just like if I could lose weight I would too! Shame and stressing me out about it only makes it worse.