Got the positive DX

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Got the positive DX

Postby Just_Me » Fri Nov 20, 2009 7:10 am

But I have a few questions I forgot to ask the neuro...
If you get sick - do you see a regular MD or do you go to the neurologist?

Those with bladder issues - are there any meds to help? Have you ever been given an ok to take Phenazopyridine (sold over the counter as AZO Standard to help stop bladder spasms and pain during a UTI)

Gonna go have myself a pity party now :(
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Postby LoveActually » Fri Nov 20, 2009 2:32 pm

I'm sorry for the diagnosis. Excuse my crappy memory but you live in CA right? Did you go to Loma Linda? Anyway, I say that to say, if you need to talk to someone please feel free to give me a call. Just let me know and I'll PM you my number.

I don't know about the bladder issues but as far as getting sick and who you see, it would depend on the illness. For example, right now I feel like my heart is beating way too fast. I'm starting to freak out about it and will probably make my way to Loma Linda (where my neuro is) if it doesn't stop soon. But if I have a cold or flu type feeling, I would go to my GP.

Always, ALWAYS, share everything amongst all your Docs. Have everyone on the same page about how you're feeling, what the other said, and medications you are taking.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Just_Me » Fri Nov 20, 2009 4:05 pm

Thank you, I will PM you & give you my number as well. I appreciate it a lot. =)

Yeah, I'm in Palmdale which is about 30 or so min East on the 138 from Victorville. I did go to Loma LInda & saw McNulty. Traffic was light so it was only about 60 min to the freeway offramp. Did he tell you he is leaving in Jan or Feb? :cry: He seemed like a good doctor...then again I don't have much to compare him to. He talked about Copax & Rebif & asked if I wanted info on all the drugs and I said no. I figure I can find any info online anyway. I chose Copax because I"m more likely to remember daily meds than 3x a week.

One thing I forgot to ask the doc & he did not bring up is what will happen down the road... I've been avoiding doing much research so maybe its just as well.

I have a call into my GP who is young and good at listening. Since Loma Linda is so far I want to talk to him about his being aware (or not) of the MS meds and symptoms and hopefully I can go see him if something comes up (like bladder issues) and get follow ups with a neuro less often.

Anyway, thanks again. I'll PM you next time I get online.
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Postby LoveActually » Sat Nov 21, 2009 11:22 am

I started the Copaxone about a week after my diagnosis and he pretty much knew I was going to start so he scheduled another appointment with me in December just to see how I'm handling everything.

He did tell me he was leaving and he set me up with Dr. Giang, who's also a MS Specialist and supposably much more experienced than him. I met Dr. Giang's nurse but haven't met him. I meet with him in February and I originally picked Dr. McNulty over him because Giang's schedule is packed and I didn't have much patience to wait. I guess now, I can wait 3 months for an appointment if it isn't urgent.

I asked him, "What now?" and he pretty much said that at this time I'll need to get yearly MRI's to check the progression (or hopefully non-progression) of my lesions and that was about it. He said if any issues came up to give him a call but other than that, just keep on living.

I liked him a lot too and it sucks to see him go. However, I'm happy I'm still at the same facility and being seen by someone who may be better than him. And this way, I'll get another opinion after Dr. Giang reviews my charts. :)
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Just_Me » Sat Nov 21, 2009 8:17 pm

Any side effects from the medicine? And how much is it costing you or does insur pay for all of it? I have Blue Cross & have no idea yet what they will pay but I found out the cost without insurance is about $2700/month!!!!!!!! :o How do people afford that?

I like the idea of going to Giang next appt for the reasons you said but I don't like that he is so busy. If you set up an appt & can't make it, it'll be months until another is available.

One good thing, McNulty liked the quality of the MRI pics so I know I can continue going local for that.

Did McNulty give you an email address? I forgot to ask that too. I want to send him an email with all my questions in writing so I can remember without getting distracted. One thing he told me is if I had an attack to go to the hospital for steroids. I didn't think of it then, but I wonder if steroids help in an emergency, why aren't they used in treatment? Or what about antibiotics?
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Postby LoveActually » Sun Nov 22, 2009 1:07 pm

I've mainly had site reation side effects and that's all. Right after the injection I get some swelling and redness but it goes away after about 30 minutes. I can still feel all my shots (16 so far) and what I mean by that is I can still feel a little lump. You can check out my blog to see the site reaction from my first & second injection. Both were in my arms which are the worse.

Go here to see...

http://tinyurl.com/yftlas4

Yesterday and Friday I experienced what was probably heart palpitations. I called the nurse at Shared Solutions (Copaxone) and she said that heart palpitations are a possible side effect of Copaxone but that she thought it was odd that I started to get it almost 8 hours after my shot. She said it may be the Copaxone or it may not. Either way, she eased my mind a bit and they went away soon after my phone call.

Then I got them again yesterday, again about 8 hours or so after my shot. Part of me thinks I'm nuts and just freaking out over nothing but I swear I feel something. It also feels shaky in my chest, kind of like vibrating. I don't think it's related to the Copaxone though.

Check out my other link below and you can see my Copaxone bill. It's for a one month supply. Thankfully, I have probably the best insurance in the US so I only had to pay $0.09 of an over $2,600 bill.

http://tinyurl.com/yjdnstr

My blog has a lot of truth in it about Copaxone and everything else I've been through. Some of it you may not want to hear but it is really easier than I expected it to be. And just know that you have a fellow MS'er just 30 minutes away (maybe 20 the way I drive) and we can get together and complain or eat :) whenever you want. LOL!

Oh, and I've heard that steroids help treat a flare up of symptoms in MS but they don't have long term effects so they can't help control future relapses. I've also heard that when you come off of steroids, it sucks. Very fatigue, weak, and who knows what else.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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