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335728 tn?1331414412

Feeling better, can breathe easier at least!

Hello friends, well I am feeling better as far as the breathing goes, I can breathe easier today and whatever the problem was seems to have let up a little.  I still have a problem speaking and I am still getting breathless when I do too much but that is why I am having the lung function test on the 28th which is only next Monday so hopefully I will be ok through the weekend and I promise that if it gets worse again I will go to ER.

In the meantime, last night at about 7:30 I started to have those da** icepick pains but in my left temple.  Usually I have them in my right temple and the droopy eye on the left side.  Well by about 11:00 I was in rough shape from the pain and stopped on the way to bed and looked in the mirror.

I was fully expecting to see a beautiful princess looking back at me (you know what pain can do to you right?) and what a shock I got when I saw the ugly stepmother with the left eye drooping worse than it ever has before!

This really is making me angry and I need to vent so here goes!

When my husband asked the bone headed dr. last year if this drooping eye and pain from the Paratrigeminal Neuralgia is ever going to go away, the bone head responded with, "of course, just wait a few months".

Well, I have waited almost a full year and it is not getting any better!  As a matter of fact, I feel almost as though I am starting back where I began last February.  The only reason that I may not be is that they have cut back my meds and I am at day 15 since they cut back my meds and I am having trouble already!  I also noticed that from the top of my nose to the inside of my left eye, there are five little wrinkles that have joined my face!  These certainly did not appear overnight, they are obviously from the droopy eye hanging around soooo long without a break!  I have told the new neuro that the ptosis has not improved since February but she didn't have an answer.

I am also delighted that I can welcome back the Burning Electric Shocks (hey, that would be a good name for a band eh?) in my heels with a vengeance!  It seems that they have been coming back regularly since day before yesterday and da** they hurt!

I have to tell you that it is not very often since this has all started that I have broken down in front of my hubby but the pain in my head was so bad last night that either I do that or slam my head through the picture window!  I am SO SICK of all of this!  

I realize that there are people out there that are a lot worse off than I am and they are more than welcome to join my pity party but all I want is someone to help me!  I have been looking for a new g.p. and there just is no g.p. in my area or within 20km that will take a new patient, especially one with MS (mostly because they admit that they don't know enough about it)!  

My g.p. and my neuro don't even think that my symptoms are related to MS...WTH is that all about?  So do they have any suggestions as to WTH it is??? Of course not, lets just reduce her meds and throw her back in the pile, maybe we will find what it is, maybe not...

Thanks for letting me vent...I just feel very angry and somehow ripped off today...ARRRRGH!!!

P.S. I have added a photo to show the ptosis of my left eye...don't know if you will be able to see it or not.  I can count the wrinkles on the picture and they ain't pretty, mind you neither is the picture but I have no makeup on and like I said, all I saw in the mirror was the ugly stepmother (but no kids involved!)
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Avatar universal
SENDING YA PRAYERS.

I'M GLAD YOUR BREATHING IS IMPROVING,THAT IS THE MOST OF IMPORTANCE.

YOU VENT SWEATY,IT SEEMS THAT WE HAVE TO TRADE OFF ONE BAD SYMPTOM,ONLY TO GAIN 3 OR 4 MORE ANNOYING ONES..

YOU GET A GOOD NITES REST IF POSSIBLE

SENDING YA CYBER HUGS

T
Helpful - 0
335728 tn?1331414412
Hi Suzanne, I get the joke and I think it's a good one...made me laugh anyway!!

I was thinking about calling my neuro's nurse to ask if they know any g.p.'s that would take me on as a full time patient.  However, I am going to wait until after I see my current one on the 6th and see what she is going to offer me.  

I have had a pretty crappy day today and I am feeling pretty rough...the left side of my face is completely numb and that is something new for me.  I had a few hours there of really severe nausea and I got cold and I still have not warmed up, wondering if I have a fever but never remember to by a thermometer...duh...

I will talk to all hopefully tomorrow, by the way, the breathing is doing well tonight, but the icepick is back...sort of feel like playing a game of rock, paper, scissors,...if I can't breathe it's because breathing is bigger than the ice pick and if I am having ice pick pain it's because it's bigger than breathing etc.

I'm going to go to bed now...have a good night all and take care!

Rena705
Helpful - 0
Avatar universal
I'm glad you can breathe, it allowed you the ability to vent. It's a joke, get it?

Seriously, I am so sorry you are going through this. I am new to this MS, and learning the terminology. You are going through a LOT and you have my sympathy. :-(

Thank God above for your husband and his going to the appts. with you. Does he have an objective point-of-view on where to go, what to do? My hubby doesn't say much, but when pressed, his ideas have merit. You've reached a wall and now you need to knock it down and move forward! The year is young, let's get you some resolution.

I'm in Connecticut, don't know much about metric, but 20 km doesn't seem too terrible to go to get some honest-to-goodness help for you! I once had to deal with endometriosis and the CT dr's were not helpful ("have some wine, relaaxxxxx"). So I researched endo online and flew to Georgia to an endo specialist. It took some doing with referrals and all, and I had to keep papers for tax purposes, but push had come to shove.

Push back Rena!

Suzanne



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