Pulmonologist Appt today

[ericaj]

Hey Guys -

Well I had my appt today with the Pulmonologist - no matter how I feel going in to see her, I always feel great coming out, albeit happy to see her again in the fuiture. How many Drs can you say that about? Honestly though she is great and easy to talk too.

The results are in .. Sleep Study results show the Periodic Limb Movement Disorder and she put me on Mirapex - what you told me about Nan but I am happy that she choose this med and not one of the anxiety ones. Nan, can you tell me anything about how you take your Mirapex? She startted me on a baby dose and when I see her in a month she will increase the med, she wants to start slowly and started me on a "baby dose" at 0.125mg so we'll see how that goes, hopefully i'll sleep better now and start to feel better. ..

A good thing even with being sick the latest Pulmonary Function tests came back no change on the Lung problems. The last ones where only 2 months ago but hey any good news is good!! -- Especially considering e/t I see the Drs. they find another problem..

Monday is the Genetics appt and my Dr. continues to believe that there is possibly something underlying to cause all these problems. But if Genetics doesnt neccessarily come up with something then she said she may refer me to Neurology - she believes though that we'll find something.

Not the greatest update, but if I think of something else i'll post again i am being notoriously forgetful today!!

Erica
PS: any suggestions on the PLMD or Mirapex welcome!!

 

[Abbanabba]

Hi Erica, hopefully the Mirapex will help your sleeping, which will hopefully make you feel a little better in general (..there's nothing like decent sleep to help the system recover and mend..).

Glad the lung tests came back OK, although I do share your frustration at feeling dreadful and all the tests saying there's nothing wrong with you (..although now I've seen my last test results, I'm bl**dy sure it's my heart, regardless of what they want to tell me otherwise!..). I'm glad you've got a doctor who's prepared to keep on pushing for answers for you. Hopefully she'll find something soon.

Sending positive thoughts your way....
Anna : )

 

[ericaj]

Anna

Anna

Hi Anna -

Thank you for your kind words ..

It isnt so much that we don't have answers to the lung problems - we have the answers (Restrictive Lung Disease) just that the numbers havent changed to much since the last PFT's 2 months ago. I have the problem of them knowing what the problems are, but waiting for the Genetics eval. to see if there is something underlying that is causing these things with nerve problems, joint stiffness, heart and lung problems, etc. So have some answers
thankfully my Drs. are treating the things they can right now and some of the things will be treated with time.

My Drs. are a great bunch, although my Lung Dr. is fastly becoming my support system and my favorite.

I hope you find some good Drs. soon!!

Erica

 

[Harrybaby666]

Hi Erica...

Hi Erica...

I am so glad that at least they are getting somewhere with finding out what's wrong with you...I agree with Anna (Abbanabba) that nothing is more fustrating than knowing that something is wrong with you, and yet the tests say otherwise. I hope for only the best news for you when you see your Dr. again....Harrybaby

 

[Nan]

R:s/plmd

R:s/plmd

Hi Erica, glad you are taking Mirapex. I tried lots of meds before taking it, and it worked immediatly.....you need to take it at least 1 1/2 hours before your symptoms usually start. If they only happen while you sleep, then take it 1 1/2 hours before your bedtime. Some folks need two doses, one earlier on, and one a couple of hours later.

Sure hope this finds you feeling better soon. When you can sleep without mini arousals from the PLMD (that you might not even be aware of) you will probably feel a tremendous difference in how you feel and function during the day.

Let us know how you are doing.

Great that you have such a good doc!


Nan

 

[gijanet]

No info..............

No info..............

as usual, but sending loads of hugs and prayers. Hope and pray you get some answers soon. Hugs.

 

[ericaj]

Nan and Janet

Nan and Janet

Hi Nan,

It is curious that you say most people take 1 dose several hours before they go to bed and that some people need to take 2 doses several hours apart several ahours before going to bed. My Pulm has started me on the baby dose of the Mirapex but at 3x's a day. I wonder now if that will always be at 3x's a day or if as she gradually increases the dose she will re adjust it down to 1 or 2 doses a day vs. 3x a day. How did you start out on it? At what dose?
Thanks for your kind thoghuts Janet - hugs and thoughts are jsut as important as advice I think!!

Erica

 

[Nan]

Hi Erica,

I started out with .125mg (same as yours) but once a day, about 2 hours before I went to sleep. I have currently worked my way up to 1.5 mg one at 5pm and 1 at 8pm and another at 10pm if I am still having problems. I can also take a .125 at 3 in the afternoon if needed. I am one of the unlucky ones considered "refractory" in that I keep needing more meds to control the symptoms. My movement disorders neurologist has been wanting to start me on another med along with the Mirapex (Neurontin) but I have been holding off....don't want to take any more meds. I may have to re-think that as I couldn't even sit still in my office today for a conference!

This does NOT mean this will happen to you! Most folks do just fine with a small dose of Mirapex or Requip. And your doc is perhaps just wanting to make sure your levels of medication are at a good level in your system when you need them by taking it 3X a day. That is clearly a good dosage to start with. You should feel some relief right away. Your doc seems like a keeper!

By the way, All this started for me right after my AVR....while I was still recovering from surgery!

Let me know how you are doing with the Mirapex.

 

[ericaj]

Nan, help..

Nan, help..

Hi Nan,

I can't report good things my first day on the Mirapex but maybe if I am lucky it is just because of the underlying cold I have. Had a terrible, terrible headache earlier tonight, where my vision was all messed up (i could barely make out anything and I was at work!!) and my entire left upper side was numb, it was hte most aweful experience I have had in a long time!

I also took my dose of the Mirapex this morning this afternoon and then I am skipping tonight as I am utterly frigthened of this happening again. I didnt realize I should take it closer to bed time with the 2 hours in between.

I am going to try and get ahold of my Dr. and see about gradually increasing up to 3x a day, see if maybe the first week I can do one dose, then 2 doses then up to 3 a day like you.


I guess I should have asked her about how exactly to take this med. I jsut figured take it the same as my Midodrine which is a really strict schedule. .. Take the first dose of Midodrine upon waking up, then 4 hours later take 2nd dose and 4 hours after that take thrid dose, but have to keep 3-4 hours in between final dose and going to sleep. Nadolol is only once a day between 3-4 and now the Mirapex! Ugh!

Scared to have that loss of vision and headache and sensation again. Scared senseless. ...

Erica

 

[Nan]

Hi Erica,
I am so sorry that you are having such a hard time with the Mirapex. Yes, you need to call your doctor right away! I looked up the side effects of Mirapex, and one of the possibilities is double vision. That must have been very scary.

It is, of course, possible, that it was not the Mirapex....have you ever had migraines? That can cause some strange visual problems as well as a headache. Only your doc can probably sort this out.

If it was the Mirapex, there are other options!

Let's hope it was just a one time experience and that it won't happen again.

Hang in there, kiddo! Let me know.

 

[Nan]

Erica,

I have been thinking about you and I really think you should call your doctor before you take any more Mirapex....just to be on the safe side. Don't try and dose yourself. If that was a reaction to it, it was a fairly significant one.

Please call your doctor before you take more!

 

[ericaj]

Nan

Nan

Nan-

I guess I am going to have to call her. I called in sick to work today as I am frightened of this happening again. I did skip the last dose last night and today have the same feelings as I woke up with yesterday, like a sinus'y feelin
as if it is in my nose/head. So I am wondering if it is just from this cold. Not sure if I should go up to the urgent care first and see if it is a sinus infection or if I should call my Dr. first?? I am hoping this will find you relatively soon.. I very much appreciate your help!!

Erica

 

[ericaj]

talked to them

talked to them

Hi Again Nan,

Well I jsut talked ot hte Dr. on call in the Pulmonary clinic - I realy wish I could get ahold of my own Dr. but she's not on call. - Anyway this Dr. thinks that it is significant the problems I had but that it doesnt sound like it is from the Mirapex. She said I should call my Pharmacy ask them about the symptoms and/or call my Dr.

I talked to hte Pharmacy and they said also it doesnt seem like it would be from hte Mirapex but that it may be and to keep on taking the med for now and on Monday talk to my Dr. especially if I get those symptoms again. That my Dr. might just lower the dose even more for now to start or switch it all together. I hope it is just a fluke and not the Mirapex though. Apparently that is a very normal starting dose. Pharmacist said to that I should take it evenly spaced apart t/o the day.

Don't know now should I call my PCP and make sure it wasnt something else significant?? The Dr. on call in Pulmonary said I probably should make sure it wasnt something else causing it, pharmacist said to wait and see. Me, I don't have as bad of a headache as yesterday but it is there behind my eyes even w/out having taken the 3rd dose last night. But ears are also feel clogged up from cold, should i go to urgent care about that.. grr...

Erica

 

[Gnusgal]

If for nothing more than peace of mind, you may want to head in to Urgent Care. I know it's not what you want to hear (and probably not what I would do myself, because I'm stubborn, as you know), but it's what you would probably tell ME to do if I were in your shoes... So, take your own advice . Get some peace of mind so that you don't cause yourself MORE problems... My prayers are with you (as always)!

 

[ericaj]

back from er

back from er

Hi Niki,

I am back from the ER/Urgent Care and they did give me a shot of Tordol for Migraine and a prescription for a Migraine Med and instructions to f/u with my Dr. next week. My headache is still there but I think I may just go and try to take a nap now. Hope to catch you on sometime today/tonight!!

Erica
PS: I hope your movie was good??!!

 

[Nan]

Erica,

I am so glad that you went to the urgent care! Hope that you are feeling better soon. I was wondering if it could have been a migraine...they do seem to be able to cause all kinds of strange symptoms.

Still a good idea to touch base with your pulmonologist....if you are not feeling an awful lot better by Monday.

Please feel free to PM me any time!

Glad things seem to be a little bit better.

 

[ericaj]

Hi Nan,

Just got an email from my Pulm. she gave me permission to stop the new med until I get over this cold and/or until after the Genetics appt. monday. Which I think I will do. I took a nap and slept off most of the headache some is still there stubbornly hanging around. Should go pick up the Migraine script, yuck.

Erica