PCP - referrals and SuluMedrol

[addicted2harleys]

I went to my PCP yesterday becasue I seemed to have more questions than answers after seeing my neuro.  I also wanted to get some more referrals and discuss IVIg and SoluMedrol.

I had asked him several months ago if I could go for PT as I thought it might benefit me with my weak legs and maybe slow the muscle atrophy in my thighs.  He had told me then that it wouldn't help.  Well, the more I thought about it, the more I kinda disagreed.  So, I asked him for the referral with the reason being that it couldn't hurt and I was willing to give it a try because I WANT MY LEGS BACK.  I told him I already researched the different PT centers in the area and found one that was very familiar with neuro issues.  He gave me the referral.

I also asked him for a referral to a neuro-ophthalmologist.  My reasons were that my eyes have progressively gotten worse ever since I first started having problems with them a year ago.  I told him I was not satisfied with my ophtho as I didn't feel he was doing everything needed to get to the bottom of it.  He just told me I have Dry Eye and put me on Restasis and OTC drops.  This is not helping.  I have double vision, blurred vision, pain when moving eyeballs and pressure behind eyes.  I also have a stabbing pain in my cheekbone area and had an instance of nystagmus.  He gave me the referral.

I got a referral for Speech Therapy last month and went for that already.  She says the flap in my throat is weak, most likely to neuro problems.  She gave me ways to help in choking on food and water.

I had asked for a referral for my hearing last month and got that, too.  I go for a hearing test on Thursday.  They do ABR and ENG testing there, as well, and depending on the results of hearing test, I may get those done, too.

My referral for UCLA was faxed in while I was there, so that is in the works.  I am suppose to call UCLA today to set up appointment.

My PCP talked to me for a while about my body going nuts for this past 2 months.  I told him about my 3 ER visits and why I went.  He feels that I am getting muscle spasms in the pelvic floor and that was the cause for the severe pain "down there" on my last ER visit.  

He told me he really feels like UCLA is going to be a good thing for me.  I asked him if we could go ahead and get started on the tests now (new MRI's, LP, nerve test) so that they would already be done for UCLA and he said no (darn it...I am tired of being patient!).  He said they would probably want to redo them all anyway and wouldn't want me to have to repeat them.  

We talked about the IVIg that my neuro mentioned.  I told him I was pretty much game for trying anything that might help me because I really want my life back.  He really wants to wait on that to see what UCLA has to say.  So, we talked about SoluMedrol.  He said he could give me a dose of it and see if I have any improvement and that if I do, then we can give bigger dose.  I said ok.  He only gave me an injection in the butt (damn, that hurt!), which was 500 mg.  Is that really going to do something for me?  My body has been going bonkers for 2 whole months now.  I don't feel a difference yet.

So, that is how my visit went.  What do you think?

Addi

[addicted2harleys]

Thanks, guys for reminding me that I did good.  Sometimes it gets hard to see that I am actually moving forward in finding the answers when I feel like nothing really concrete was accomplished.  Does that make sense?  It didn't to me.  lol  I know what I mean to say...just getting my fingers to cooperate. hmmm

Hopefully this coming up week will get my PT going.  I was hoping that massage type things were going to happen because that is what my legs feel like they need.  I find myself rubbing them almost all the time.

I am really confused on what is the right type of PT treatment is the best to get results and not harm further.  After I have my first appointment I will probably end up posting here to see what you all think.

The shot my PCP didn't do anything for me.  I have come to the realization that I truly have to sit back and wait for some relief.  I have been to the ER 3 times during this flare and seen my neuro and PCP.  No one seems to be able/willing to give me either enough of something or try something different.  So, I will just wait out the flare and hope I get as much mobility back that I had before it started.

D - Funny...my mom and I were just talking about UCLA and whether I will be my normal or in a flare when I finally get there.  It is pretty sad to hope that I am still flaring when the time comes...no one should have to be in that position.  You are right, it is a rough decision.  It baffles my mind.  I do know that I will not be going there anytime in the very near future.  I guess my medical file is being reviewed by the neuros there.  I am suppose to call them back on the 22nd.  

Who exactly do I go to to get EP done?  I had a hearing test and all my results were normal.  But, I am still having trouble.  I want a BAER test done but don't know how to go about getting it and wonder if I should just wait for UCLA?

Got a lot of things running through my mind today.  Trying real hard to stay positive but I feel it slipping today.  I think I am just tired in my mind...you know?

Addi

[RedFlame]

I agree with Ren and D about the PT.  The massage and the deep tissue wand thing was mostly what we did.  She also stretched muscles manually for me---I can't tell you how good that felt.  We also did some traction but I think that was harmful.  The massage is heavenly

[rendean]

Go Addi!!!

You done the redheads proud! I am so glad you stood up for yourself and got what you needed (almost all that you needed).

Your PCP is great!!!  He truly listens to you. He's a keeper!

As for PT, make sure that the PT is "neuro literate" just as Zack's mom said. You should massage out the knots in the muscles, then stretch them before you work them. If it hurts or spasms my PT tells me to stop. Her reasoning is that she is starting me off with baby steps and if the muscles are spasming then they aren't ready and/or I  am in a relapse.

Go forth and conquer!!!!!

Ren

[Zacksmomi]

Ok I have some opinions here (I know shocked right)
I agree the shot was to pacify you and would do not much for MS, but if it does help you, that is a good indication that your inflamation is (in addition to most likely MS) from one of the other things you are looking into that are relieved immediatly by steroids.  If you do feel any better, call and ask for a dosing of prednisone and see how that helps.

Take it from me, you DO want the UCLA Dr to see you at your worst as I learned when I went to UCSF right after 5 days of solumed. It is a hard decision to make...do You continue to suffer, or get help and risk not getting a dx because you are looking great when UCLA sees you.

As for PT, you need a PTist (haha made that up) who understands spasticity.  My first PT did not get it and had me do exercises and try to strengthen the muscles all the while making me unable to do anything else but PT cuz it wore me out soooo bad.  I now have a PT who massages out the spastic muscles.  She explained that it is important to get proper blood flow to the injured muscles before you exercise and strengthen them.

Waiting is the hardest part, but you are sooo much closer to an answer to at least some of what is going on.  Hang in there girl.  I know its tough, but so are you.

D

[RedFlame]

YOU TO GIRLFRIEND!!!!

You continue to amaze me with your positive attitude, tenacity and patience (even though I know you hate waiting).  You really did a great job with your visit and stuck to your guns.   Good for you!!

You are really taking charge.  I can't wait to hear how your PT goes as well as your Opthalmalogy appointment and all of the rest.

I know you have waited such a terribly long time Addi.  It sounds like you have a really good PCP that cares about you and knows what a tough time you have had.  

(((Hugs)))

[addicted2harleys]

Thanks, ess.  I agree in that he did me good.  He always does.  I wouldn't trade him for the world.  I hope his approval of all the referrals will get to the bottom of this, too.  He was the first doctor that has taken me seriously.  He is also the one who has given me relief from my symptoms and requested many tests.

I think he was pacifying me with the shot, too.  He knows I am completely miserable and tired of the waiting game.  He also knows I have been doing a lot of researching and supports me in that and this forum.  ;0)

Patience has not always been one of my stronger traits.  lol  This process is really testing me and somewhat building it.  

It seems like as soon as my neuro saw clinical signs and I got my referral started for UCLA, all my patience went out the window.  ;0/

Thanks,
Addi

[essdipity]

Actually, I think your PCP did a lot for you. All those referrals are good! Congrats, as you will get to the bottom of things, I hope.

As for the steroid shot, there I think he was pacifying you somewhat. I'll be surprised if it helps much, but it shouldn't hurt either, so that's good. He probably doesn't want to do 'treatment' since you are being passed to UCLA, but he obviously believes you and is taking you seriously.

Try to be patient as this unfolds. Not easy, I know!

Best of luck,
ess

[addicted2harleys]

lol  I was thinking the same thing, but he actually said he is glad to see me being my own advocate...so did his nurse.  So, that made me feel better about bombarding him.  ;0)

No taper dose or anything yet.  He said he wanted to see if the one shot helped me out first.

Addi

[missy72450]

LOL. I bet your PCP does not want to see you coming. Good for you. If you do not stand up for yourself no one else will. I think the solumedrol would have been better IV but hopefully you will feel better. Did he give you any by mouth to follow it up?