What to do?!?!

[seal]

For the past several days, I've had worsening symptoms, TN, muscle weakness, shoot pains in fingers, worsening fatigue. Called Neuro . Office staff called me back. "He doesn't know why you're having these symptoms, and can refer you to Cleveland Clinic (4 hours away!).

That blew me away!!! I asked if he had my chart>? I let the staff know I have MS and these are not uncommon symptoms for MS. Asked if I could see Neuro. They would be happy to give me the next appointment which is in January!!!

He's my only option in town. Right now, Im crying between pain and frustration.

Are my symptoms so off the wall? I didn't think so.

[22cyclist]

I am so sorry this is happening to you. It sounds like you are in a flare and could possibly benefit from some IVSM. Does he have a specific secretary or nurse that you could talk to about this? Sometimes bypassing the front desk staff can help. It sounds like some of the information got lost in translation, or you just do not have a good neuro. In the latter case, take the referral to the Cleveland Clinic. Many people have to drive a few hours to see their MS specialists for good quality care.

For now, I suggest you go to the ER. At least they will treat you with some steroids, and will call your neurologist to suggest what to do next, or you will see a neuro in the ER.
Either way it is better than suffering at home.

I wish you the best of luck...don't let this just drop, its your body, you know something is going on, keep pushing. An ER visit is in order.

Let us know how it goes, OK?
Lisa
Moderation Team

[rdmc]

As Lisa said, you can go to the ER.

But if you don't want to go to the ER and your neuro's the only neuro, you might start with your GP. See him, explain your problems, if he can't help you with prescribing IVSM, you could ask him to give a call to the neuro. If the neuro/neuro's staff get a call from another doctor's office, they're more than likely to get you in.

I know that sounds sneaky, but usually when you are in bad shape, and need to see the neuro, and his staff gives you the "our next appt is" line, it's so darn frustrating because you don't know if the info is coming directly from the doctor, or if they're fully explaining the symptoms to the doctor.

I once had (emphasis on "had") a neuro whose office I called for weeks because I had a symptom (facial spasm and tic) that wouldn't ease up and opening my mouth, eating, or talking was getting harder and harder. The staff kept giving me the line like you're getting...I had a 6 month appt. scheduled and it was coming up in a couple months, and that's all they could offer, they said. I asked to be put on a cancellation list but to no avail.

So I happened to be at my pump dr. for a refill, and she saw the problems I was having with my face/mouth. Next day I get a call from my neuro's office saying they wanted to see me right away. Found out later my pump doc had put a call into my neuro, and voila...instant time in the schedule for an appt. for me.

So that may be a kind of round about way of getting an appt. , it's just sad that we have to revert to that to be seen. Like I said, that neuro is now my former neuro, but it doesn't sound like you have much choice where you live.

And once more, if you're having trouble coping with all the acute symptoms...head to the ER, sometimes it's our only choice.

[KatieAgain]

Please do not pass up on the referral to the Cleveland Clinics Mellon Center. You can have both a neuro and a MS Specialist long term. When I lived in Ohio, I had a local neuro that handled immediate concerns, but my MS Specialist was at the Waddell Center in Cincinnati. It worked great.

[seal]

Thank you all!

Thanks guys for your suggestions.

I do think, like 22cyclist stated, it could be a matter of terminology. As you all know, it's hard to put into words all the different sensations we have.

I'm waiting for Neuro to call back. If they don't by the time I get off work, I'm headed to ER.

I just want someone to adjust my meds. I'm on very low dose Baclofen (10 mg x 3 daily). The spasms are making me nuts, and hurts like heck., and seem to be getting worse, which, of course, sets everything else off.

I'll let you all know what happens

Thanks again for all your great advice.

[seal]

Played phone tag with Neuro Friday, then office was closed over weekend. Luckily (?) I think the spasms were a pseudoflare. The all day, all the time" issues are now down to just everyday "normal"

The problem is he wants to see me on Wedsnesday. But when I talked to his nurse, she stated Neuro doesn't think my symptoms are MS related.

The problem (the biggest problem, anyway) was the muscles in both my arms felt like they were "contracting", this went down to my fingers. Also, intense pressure on around my eyes.

I realize part of the problem (as we discussed earlier) is my inability to tell Neuro what I'm feeling in ways that make sense to him. I say "feels like contractions", but, would spasm be a better word. Like I said, I know what I'm feeling, but it's so hard to put into words.

Also, from reading other posts, I think I may also have Autonoic Nervous System Dysfunction (explains my stuffy nose when I have certain issues). I'm not sure if I should bring this up when I see him on Weds. I realize his squezzing me in for the spams.

So, I guess my question is how to comminicate what I'm feeling

Sorry so long, and, as always, I greatly appreciate any help.