Wait for neurologist?

My PCP diagnosed MS in September, but I can't get in to the neurologist until late January. If it were you, would you ask the PCP to at least start some prednisone-type treatment in the meantime? My symptoms fluctuate a great deal, making me think this relapse is nearly over, only to have the symptoms reappear. Your thoughts would be greatly appreciated.

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15 Replies

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  • I have found there's allot of waiting for appts. I had first symptoms at end of June, went to ER, Ortho doc. Took over a month to get first neuro appt and he was a dud. He did give diagnosis (over telephone) then told me "I'd had long life, so why was I upset?" Well, at 68, I want to keep going for a long time. He did refer me to other Neuro that I really like, but there again, it's a waiting game for new MRI's, blood tests, spinal tap. Those are all done and now I have to wait until Dec 19 appt. to get results. The first 2 docs did give me 2 rounds of high dose prednisone type meds. They helped my arthritis, gave me mood swings and did help reduce the intensity of the tingling, needle and pins feelings in my ribs, legs and feet. They've worn off now and with cooler weather, my feet feel like they are in blocks of ice.

    I have never been symptom free since June. Symptoms just seem to vary intensity and increase as the day goes on. Hope you get some relief and answers. Lynn

    #Calfeechick

  • I'm so sorry there are so many of us waiting and waiting. It seems to be a common problem.

  • I waited and the neuro NP was even my student at the time! Hang in there!

  • My question to you is have you gone to this neurologist before? If not you should find another neurologist, ask your PCP if they can give you another neurologist and I would ask your PCP any questions you have. Remember you are your own advocate. I found that out on my own, when I had diagnose myself I got rid of my PCP and found my neurologist by asking others that had MS who there's were. Good luck.

  • Hi.

    MS is an illness that no one is in a rush for... or so it has been my experience.

    I can't see there being any major downside to getting juiced up with some steroids ahead of the neuro to see if it checks inflammation in the relapse you're experiencing. If it were me, I'd go for it.

  • greaterexp since you haven't seen the Nero yet, shop around to see if there is one that can see you sooner. As far as predsodon you really don't want to take it unless absolutely necessary. But talk to your PCP about what's happening and see what he suggests, he might even get you in sooner.

  • Hello, me personally I wouldn't recommend steroids until you have a diagnosis. Steroids can mess with your body functions a lot, so stay away if you can until. Now about the delay to see a neurologist, you might have to find one on your own. Three to four months is a long time if you're having issues. Contact the MSAA to get referred to a neurologist. Stay proactive and keep us informed of your situation.

  • did they take spinal fluids? and did you have a mri yet?

  • Yes, the MRI of the brain in Sept. showed MS. That was ordered by my PCP.

  • Check with the National MS Society. They have a list of Neurologists that know MS. Call them and they will send you a list for your area.

  • I'm sorry for the run around with your doctor. I agree with everyone here, try to find a different/new neuro, if possible obtain copies of your MRI for the doctor because they will try to make you get another one

  • Steroids can have good or bad results. For me, they were amazing the first couple days then I went back to not feeling below my waist. Bummer! If you can, wait till you see a neuro and ask if the dosage is right for you

  • I would have waited 3 months to see the neurologist of my choosing, but I got lucky and got in on a cancellation. Is there a reason why your GP referred you to this specific one, I wonder. I wasn't offered steroids and my issues were going on for 8 weeks by the time i got in.

    Here's some info on steroids: overcomingms.org/ms-a-to-z/...

    When the flare seemed to end, it did just as you say, better enough to give me hope, then back to crush it all. It does end though!

    I hope yours ends soon!

  • Thank you so very much for the article on steroids. I may pass it on to my PCP to see if that should be considered. I've done only a little reading, and there still seems to be much difference of opinion. It's good to be armed with facts. Bless you for your help.

  • You're welcome!

    Yes, so many opinions, lots of drug studies, limited lifestyle studies, some amazing personal stories of dealing/healing/living life, and tons of reading for you to do...I'm riding that bus now :)

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