Was in hospital -- exacerbation

Hi, all-

I have been exacerbating for about 3 weeks now.  My primary has been playing with my meds trying to give me some relief.  Yesterday I tried to get in to see him (cause my neuro *****) but he was double booked.  I did talk to his nurse and she advised me to go to ER.  My pain was just so very intense.  I had been at my breaking point for about a week, but crossed it yesterday.  The burning in my right arm, which was a new symptom with this exacerbation, was getting more intense.  And my normal squeezing, pressure pain in my legs was off the charts.  I have other things going on, too, but these were ones I could not push through any longer.

So, I went to ER.  The doc I ended up seeing was the same one I had seen when I had gone in last year for swallowing trouble...he labeled it as anxiety.  I got a little concerned that I was NOT going to get the help I needed.

I was wrong.  The same doctor that wrote me off last year, gave me validation this year.  Maybe it helped that I printed off the med page I had made on here (showed all of my doctors, tests results and meds I am on) and also my trackers and gave them to the nurse when I got there?  lol I was also in my wheelchair.

Remember, I am undiagnosed as of yet.  Yet, he believed that I had neurological problems and saw I was exacerbating.  He gave me IV Solu-Medrol and and something called Toradol (I told him I prefer not to have narcotics, if possible).   He also recommended nerve test on arm for carpal tunnel (sp?).

When I left the hospital I was at least in a manageable pain level and did sleep through the night (haven't done that in a while).

I went to my primary today and that went well, too.  I didn't think I could love and respect this man any more than I already do, but it happened.  He is pushing through my referral to USC MS Clinic....referred me to audiologist and speech therapy for dysphaxia (you mean it is NOT anxiety??).  He upped my Lyrica, Doxopin and Baclofin.  He sat and talked to me for over an hour about the symptoms I am having and smirked at the carpal tunnel.  Oh, I also got more Solu-Medrol.  He also got an exception with my insurance for meds so I don't have a 7 limit a month...which hadn't been working for me.

I also talked to him about whether or not I have been ruled out for sarc and Vitamin B12 deficiency (I wasn't sure).  I have been...plus many other things.  He told me it is a definite that I have neuro problems.  He, again, told me I am in limbo and while it is so hard for me and he is truly sorry for that, he says we just have to keep treating the symptoms that we can until something shows up.

So, while I still feel like crap physically and am feeling sorry for myself for having lost SO MUCH....I am flying high on the inside.  Validation and respect can do so much!

Just thought I would share that with my new forum family!

Addi

[HVAC]

I hope they continue to help.

Alex

[jensequitur]

It's good to know they're trying to help, right?  

[RedFlame]

sorry to hear how much pain you have been in--hopefully the ER docs will continue to be helpful when you need them.  I think you will get what you need at USC.  I am from California and took some of my undergrad classes there.  Oh how I wish I lived there now!!!

[Zacksmomi]

Welcome back Addi,
Sorry to hear that you still don't have a dx, but relief is good for now.  Keep up the fight girl.

Big Hugs
D

[addicted2harleys]

Thanks, guys.  ;0)  I feel like I am heading in the right direction.  My MRI's here have been on a 1.0T and USC has a 3.0T.  That is my goal right now...too get new MRI's on a 3.0T.  And I have been hearing some good things about USC.  If I don't get my way that route, I plan to head up to San Fransisco.

Redflame...I used to live in Brighton...only for about a year before heading down to Ohio.  I like it better over there.

D - How are you??  Didn't you go to doc this week?  Relief is good for now, I agree.  I am keeping up the fight though and glad you gave me some things to check with my doc.  Thanks.  Big Hugs back~

Addi

[sllowe]

Niiiice!!!!!!!!! I mean, like you say, it really is terrible to deal with increased symptoms, but this sort of action is spectacular.

Onward for you!!!!!!

And, so good of you to have your paper and tracker info at the ready!

Hope you get some more of those restful nights :)
-Shell

[addicted2harleys]

Thanks, Shell!  

I am really happy with the way this site has things available for us to use to keep track of things.  And then be able to print them out for our doctos.  I love it!

I am feeling better by the day.  My pain has decreased, which is a major plus for me.  Still can't walk, but hopefully that will change.  

Thank you all for the wonderful support and advise you have all given me!  I really feel that this has helped me go in the right direction doctor-wise.  ;0)

Addi

[Celery47]

Hi Addi!

I am so sorry to hear about the serious pain :(  I hope you'll keep on feeling better, with the drugs!  Also, so glad to hear there's something making you feel good INside - I agree, oh, it means so much when doctors actually take you seriously, so important, and this sounds good!  I'm rootin' for ya :)

Hugs -

Louey

[addicted2harleys]

Thanks, Louey.  My pain has gradually gone back down to my normal level.  Though I would like it to disappear forever, I am willing to accept this level as I have had it for 5 years now.  I really am feeling better with each new day.  Thank God!!  I was really, truly unbelievably miserable there for a couple weeks.  Just need my legs back now!

Hugs,
Addi