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Post-op 5 months. Not what I expected, but there's hope!

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Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Mon Apr 14, 2014 2:21 pm

First topic message reminder :

Ok, I am finally here to update everyone on my progress 5 months after my surgery.   It has been a very rough 5 months, but I am still hanging in there and praying things will still get better.    A couple of symptoms resolved the day of surgery, others resolved afterward, and some still remain.    I really thought after those 2 tumors were removed, I would be feeling great.   That hasn't happened.

My labs since surgery have revealed a calcium of 10.2 with a PTH of 26.8; calcium of 10.0 with a PTH of 38.0; and a calcium of 10.2 with a PTH of 31.7.    I'm wanting with all my heart to feel I have been cured of this disease, but if Dr. Norman is right in saying adults don't live with calcium in the 10s, something is still wrong here.   My PTH is now half of what it was before surgery, when my calcium was at these same levels, so I hope all is well, but I still wish my calcium wasn't in the 10s!

Before I go any further here, I guess I will finally let you all know the good news I was speaking of yesterday.    The 7-month non-stop twitching of my right upper eyelid has FINALLY stopped!!!!    I also have been having twitching in all other eyelids and all over my face all day long.    At any point of the day, something would be twitching along with the right upper eyelid.    Those facial twitches were also completely gone for 2 days.   Yesterday they started again, but not nearly as frequently.    This is VERY big for me!   I was starting to imagine I had all sorts of diseases due to these twitches.    Now there is hope that SOMETHING is going right in my life!      I still have the intermittent twitches in my upper arms and thighs and nonstop twitches in both lower legs, but since the eyelid and facial twitches have resolved the way they have, at least now I can hope the others will be gone at some point also.       I do have a bit of a concern with this latest improvement though.    I had increased my thyroid medication several days ago.   I am wondering if that might be why the twitches subsided.    The reason I am concerned about this, is because when I increased the thyroid meds, my eyeballs started aching.    This happened once before when I tried to increase the dosage.    So I had to cut back to my regular dosage.    I am hoping it wasn't the extra thyroid medication that caused the twitches to stop, because if that's the case, they might come back now.  : (    

Now I will go through my symptoms and explain where I am with each:

The first symptom to go after surgery was the IBS.  The day after surgery, that was GONE, and that is a biggie for me!    I have suffered with this for about 33 years.

Next to go was the unrelenting running of my nose!    For about a year before surgery, my nose would pour nonstop for several days to a week or more, and I do mean POUR!   I couldn't leave the house when this would happen.    I also had extremely congested sinuses, so bad my teeth would ache.    My ENT doctor suspected the HPT as the cause for all of this.  She told me she had seen some very strange symptoms caused by this disease.    I think she was right on the money, because it was also gone within a couple of days after surgery.

My head had hurt every day to some degree for 3-1/2 straight years.    After surgery it hurt terribly for a couple of months.   It still hurts now, but it's not as painful, and it's not constant.  

I had a lot of trouble for a few years before surgery with an extremely dry left eye upon awakening every morning. It felt as if the eyelid was stuck to the eyeball.  I couldn't open it for about 15 or 20 minutes.     It is no longer like this every morning.   Most mornings I have no trouble at all, and the mornings it is dry, it is not as dry for as long.

My ears had been clogged up for a couple of years, and I'm guessing that is related to all of the added congestion of my head.   My ears are now clear.   I also have had trouble for a few years with my ear canals itching intensely and peeling.   This problem persists.

My neck pain has been 1 of the most painful symptoms.    For 3-1/2 years my neck has been VERY stiff and VERY sore.    At times it will cramp up very hard and stay that way for a couple of months before it will let up.    It will wait a little while and then repeat.    It is very painful to turn my head to either side.   It seems this will be 1 of the last symptoms to resolve.

My shoulders and entire back have been cramping very hard for 3-1/2 years also.     When they do cramp their hardest, it is very painful.  This will last for a few months, and then it will let up some.    I also would get very sharp cramps in my sides every time I would reach for something.    For a couple of weeks now, the severe cramping has stopped.    My back still cramps up when I sit to put on my makeup or when I stand for more than a few minutes, but it's much better than it was!

My upper arms, thighs, and fingers of my left hand have all been very stiff and painful for 3-1/2 years.    My arms and thighs are still very painful, but the fingers will have some good days now.

I had a lot of arthritic-type pain in my thumbs and wrists for a couple of years before parathyroid surgery.    This stopped completely since, except for the arthritis pain in my right thumb, but a few days ago, it all started again.   I think some of the pain in the right thumb is due to aging.     Twelve years ago I did have arthroplasty surgery on my left thumb.   I was hoping that pain was gone for good after that surgery.    I am very disappointed that I am having pain there again.    I guess time will tell if I need more surgery for this problem or it it is being caused from the HPT.

Another VERY painful symptom I've been dealing with is the plantar fasciitis.   I also have severe burning, throbbing pain in the big joints of both little toes.   And I can't forget the pain on the bottoms of my feet.  It feels like I'm walking on golf balls most of the time.    This all started exactly a year ago, and it is still going strong!   Although, I am now able to walk without crutches, so I guess I'm a little better off than I was.   I still have to limp when I walk, but I have noticed a few times I was not limping at all, so hopefully this will continue to improve.   Standing is much harder than walking, even though walking really hurts.  I still can't stand for more than a couple of minutes without needing to find a place to sit down.

My shins and forearms ached a lot before surgery.    The forearms have stopped, and many days the shins don't hurt at all, but they still do hurt a little some days.

The acid reflux is finally improving!     I thought that would never stop!   I was hoping immediately after surgery, when the calcium was supposed to drop, this symptom would resolve.    Since my calcium didn't really drop all that much, I thought it was going to last forever, but it is finally calming down.   I stopped taking all proton pump inhibitors a few months ago when I learned they could cause muscle cramps.   Muscle cramping has been 1 of my worst symptoms, and I didn't want to add to that problem!      I now take Gaviscon on the days that I might get some burning.   Most days I don't take anything.   For several months after surgery, I would have severe burning every time I ate.  It didn't matter what I ate; I would still burn badly.    That doesn't happen anymore.  

My hair had been falling out badly for about a year before surgery.   It continued to fall out for about a month after surgery, and then it stopped.   However, from the looks of the new hair growth after surgery, it looks like the majority of it started to grow back in immediately after surgery.   I know that doesn't make much sense, but my body never makes sense!   Smile 

I had a lot of trouble with ocular migraines before surgery.   The week before surgery, I was having 1 of these things every day.   The day before I left for Tampa, I had 2 of them!    During the 5 months since surgery, I have only had 1.     Quite an improvement!!

My hips and knees used to throb at night when I would try to sleep.   I know, that makes no sense either.    They would ache so badly, I wouldn't be able to sleep.   That is all gone.

For a few years before surgery, I had a lot of trouble with hot flashes.  Yes, you could probably blame some of those on menopause, but I was having a hot flash every 20 or 30 minutes all day and all night long!!     That is 1 heck of a menopause, wouldn't you say?!!     After surgery these greatly diminished.   I now have maybe 1 or 2 most days.  

I'm still not sleeping normally, but I am no longer waking up every darned hour all night long!    Since surgery I have slept for 5 hours straight once and 4 hours straight maybe half a dozen times, but most nights I sleep for 2 or 3 hours at a time.   Still only sleeping about 5 hours total a night, which I am hoping will improve soon, but, hey, 2 or 3 hours at a time is MUCH better than waking up every hour, so I guess I will survive!

My weight is finally starting to come off.  I don't know if this was HPT related or not, but before surgery no matter what I did, the weight just wouldn't budge!    I don't know if this will continue or not, but for a few pounds have recently vanished.

I think this pretty much covers where I am 5 months after surgery.      If I get a chance today I will take a picture of my scar and post that too.   It is barely noticeable now.    The big golf ball-sized lump is completely gone.  That took a few months to go away.   I know they say it is normal to have this bump after surgery and that it will go away in time, but when it's on YOUR neck, I guess it's normal to think it just might not.    It does!  

So even though my journey is not over yet, I am better off than I was before surgery, and if I know if I can keep marching, I will eventually reach my goal of good health again!     And I WILL keep marching!!

Audrey


Last edited by Little Audrey on Mon Apr 14, 2014 8:49 pm; edited 3 times in total

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Mon Jun 09, 2014 10:45 pm

Yes, thanks, Brigitte!    

I have been researching extensively now for 3-1/2 years.   It has become second nature to me.   I love a challenge, and I love solving mysteries, so this is right up my alley.    And besides, I LOVE feeling well, and since my doctors can't seem to figure me out, I keep working on it myself!!    I was thinking maybe I wouldn't have the need for so much research after surgery, but it looks as though it will continue for a while longer.

My appointment went well today.   I was able to accomplish what I set out to do.   My main goal today was to obtain orders to test for serum cortisol and prolactin.   I have both!    My PA didn't want to order the 24-hour cortisol saliva test yet.   She said if either the serum cortisol or the prolactin is elevated, she will then order the 24-hour cortisol saliva test.    I told her all of my remaining symptoms are a perfect fit for a pituitary or adrenal tumor, which is why I was requesting both tests.   I am really leaning toward the prolactinoma.  

We discussed the 10,000 IU of vitamin D3 that I started taking daily on the 13th of May.  I told her I started taking this because I saw that my vitamin D level was only 40 on my last labwork, and also because it seemed to diminish a LOT of my muscle weakness after being out in the sun for a few hours.    I mentioned that I also felt the need to boost my immune system to get me stronger to get through this recovery.    She wanted me to cut the dosage in half.   So I will, but I really don't want to.

She was not happy that I couldn't get an appointment with the neurologist she referred me to, until the middle of August.   She was very concerned with my very weakened muscles and the total-body muscle twitches.  She was happy that the muscle twitches have just about totally resolved in my face and resolved quite a bit in my upper arms, but she really felt that I needed to see the neurologist much sooner.   So she gave me the name of another neurologist.  She told me to keep that appointment with the first doctor in August, in case I should need a second opinion.   I will call tomorrow and try to get an appointment with the new neurologist.   I did mention to her that muscle weakness is a symptom of elevated cortisol.

She was also concerned that I am still not sleeping well.   I still only sleep for a total of 5 hours.  I usually sleep for 3 hours and then for 2 more.    I told her that is a big improvement from before parathyroid surgery, but I know it's still not good.   I told her I had just read yesterday that inability to sleep is also a symptom of elevated cortisol.   I can't wait to see those levels.

I didn't ask her to check my ferritin.   I wanted the chance to go over all of my old labwork to see what those levels were in the past.   I didn't get that chance before my appointment, darn it!     If i see that the levels have risen over the years, I will call and ask that she add that to my other lab slips.

I told her I was really hoping it would be elevated cortisol that has been causing my terrible breast pain for the past 8 or so years.    I have not been able to get a mammogram due to this darned pain!    I did talk my gynecologist into ordering a breast MRI several years go, but I am way over due for a check now!   My gynecologist told me that they don't insurance providers don't like to pay for breast MRIs before a mammogram is performed.    I was very lucky.   My provider did pay in full for the MRI!   I don't know if they would want to do that again though.   I hate to ask.   Maybe I'll run this by my PA at my next appointment.   If my problem should turn out to be elevated cortisol, and we can take care of that problem, maybe the breast pain will resolve, and I will be able to get a mammogram.   I am not a big fan of mammograms.   I think they're barbaric!   But since nobody can come up with something better, I guess I would go!  

She was happy that my last serum calcium was finally under 10.0, even though it was only 9.9.    I told her I wasn't happy that the PTH rose to 42, but that those levels are acceptable on all of the normograms and charts, so I guess I should start thinking of other causes for my remaining symptoms.

I told her about my eye appointment a couple of weeks ago.   I told her I decided I should go get the big, cloudy, floating things in my left eye, the double vision, and the dry eyes checked out by a professional.    I told her how the optometrist did the entire exam and didn't see ANYTHING abnormal.   Then when I asked him if the cloudy things would resolve on their own, he redid the exact same exam and then told me he saw a very small cataract in each eye!    I told her that he told me I would need surgery in the fall, which surprised me because I didn't think they performed cataract surgery until the cataracts are ripe, and mine were very small.   We both agreed that I need a second opinion.    I mentioned to her that blurry vision is also a symptom of a pituitary tumor.

Well, there you have it.   One more appointment under my belt.   I don't see any more in the very near future, but that doesn't mean there won't be any.  : )

Dr. Aud


Last edited by Little Audrey on Tue Jun 10, 2014 10:17 am; edited 1 time in total

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Kathi209 on Tue Jun 10, 2014 2:31 am

That is great news Audrey, you do have a wonderful PA. I am glad your fighting for your health. I want you to know I think you are one classy lady. I seen some of the posting on the other forum but I guess I missed the end. Sorry that happened. As they say across the pond chin up. And you rock.

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Tue Jun 10, 2014 2:49 am

What a sweet thing to say, Kathi. You just made my day. Thank you!

Yes, that was quite an experience with the Facebook support group. As I stated on there, I think I was just really shocked! I don't think I've ever had anyone say that to me in all of my 61 years! That's ok, though, I know she has some serious issues. All is forgiven.

Again, thank you for the kind words!

Audrey

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Tue Jun 10, 2014 3:42 am

Great news, Audrey, that you and your PA are taking such a step-by-step integrated approach. Something very positive is bound to come out of this for you.

Love from Tigerlily xx

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Amanda Lynne on Tue Jun 10, 2014 7:25 am

Well done Audrey
You manage to keep so strong and fight everything that's thrown at you. I'm so glad your PA is on your side and I'm sure she will get to the bottom of this.
Good luck with your blood results and the neurologist appointment.
Love Amanda xxxx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Brigitte0 on Tue Jun 10, 2014 8:06 am

Audrey, I'm so glad your PA is on your side and really helping you through all this. You *will* get to the bottom of it all eventually and get better. Best of luck with it all. 

I only joined the Facebook support group recently and I thought it was you in the middle of a mess but you are, as Kathi said, a classy lady and dignified and honourable too. I'm a bit overwhelmed by that group: it's too big and scary! I'm too much of an anxious personality: I could never have opened up to them as I could to everyone here. I'm so glad to have found this forum because you all feel like friends. 

Take care of yourself and keep fighting! 

Love 
Brigitte xx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Jasmine2 on Tue Jun 10, 2014 9:33 am

Yes, I agree with you Brigitte about the Facebook group, I much prefer our forum.  I only dip into it now and again to see if I can learn something new, but I have to say I found it hilarious that our lovely Audrey was told to F off by another member (who was summarily removed needless to say), sorry Audrey but it was just so funny...I can just picture your face ..... 

Jasmine x
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Amanda Lynne on Tue Jun 10, 2014 12:02 pm

I can't believe what I've just read, how horrible, I'm glad I never joined the Facebook group. Poor Audrey I bet she didn't deserve that, what on earth was that person thinking.
It would never happen on this forum we respect each other's views far too much.
Rude rude rude and as you say Jasmine I can imagine the look on Audrey's face   pale  affraid  Mad 
Stay on here girl with all your friends  Smile
Amanda Xxxx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by lozza on Tue Jun 10, 2014 12:31 pm

Hi Audrey,

I haven't joined this facebook and from what people are saying I won't, support is about encouragement, understanding. I like this forum as people give me good advice and genuine support.

My GP said to me recently " you know you have a rare disease "- my response was " I don't want a rare disease, knows one understand this, you get no help from hospital and I have been left in the wilderness for the past year "- I think she was a bit shocked by me reaction.

This forum has helped me with the "wilderness" - you don't need people to be rude, when we are facing all of this.

some people are just horrible, this forum offers support/ help unlike others.

Audrey, don't take no notice of people words.they are no worth it.

I always think of Kipling "IF" He certainly knew humans .

I hope Kipling words offer some comfort to all of this who are dealing with parathyroid.

best wishes

Lozza

If—
If—
By Rudyard Kipling 1865–1936 Rudyard Kipling
(‘Brother Square-Toes’—Rewards and Fairies)

If you can keep your head when all about you   
    Are losing theirs and blaming it on you,   
If you can trust yourself when all men doubt you,
    But make allowance for their doubting too;   
If you can wait and not be tired by waiting,
    Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
    And yet don’t look too good, nor talk too wise:

If you can dream—and not make dreams your master;   
    If you can think—and not make thoughts your aim;   
If you can meet with Triumph and Disaster
    And treat those two impostors just the same;   
If you can bear to hear the truth you’ve spoken
    Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
    And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
    And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
    And never breathe a word about your loss;
If you can force your heart and nerve and sinew
    To serve your turn long after they are gone,   
And so hold on when there is nothing in you
    Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,   
    Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
    If all men count with you, but none too much;
If you can fill the unforgiving minute
    With sixty seconds’ worth of distance run,   
Yours is the Earth and everything that’s in it,   
    And—which is more—you’ll be a Man, my son!
Share this text ...?


Source: A Choice of Kipling's Verse (1943)

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Tue Jun 10, 2014 12:52 pm

Well, let me make it clear that I do much prefer this forum to any other group!   That will never change.   You are all like family to me, and this forum means more to me than you will ever know!     I joined the Facebook group in hopes that I might be able to help others.   I will NEVER abandon this forum!!!

Yes, I have to admit I was VERY stunned when that happened!    It was very apparent immediately that she was very high-strung and had a lot of anger issues.    

She posted her first comment.   We were all replying to it.   Then a very sweet woman posted a question for another member on that thread.    The "nasty" woman slammed her and said, "If you want to speak to someone else other than me, start your own thread.  Don't post on mine!"     Oh, my goodness!    When the sweet woman noticed that remark, she asked why SHE was being singled out, since we all join in and post replies to anyone we wish on any thread.    The nasty woman was very rude and continued to  repeatedly criticize her remarks, telling her to let it go, and that she didn't join the group just so people could bash her for something she said.   She didn't think her remark telling the sweet woman not to post on her thread was rude.  I commented saying that her remark did sound harsh, but that we all understood she was having a bad day, and I hoped tomorrow would be better for her.     Later on in that thread, the sweet woman, being forgiving, asked the nasty woman if they could just forget it and be friends.   Then the nasty woman said, "You Americans just don't have a sense of humor."   Well, that really ticked me off that she was trying to make it look like the sweet woman was at fault here!     So I posted, "Oh, but we do.   Your comment to ____ did sound harsh, and it was not funny.  However, you did explain that you were having a bad day, so we all better understood why you posted it.  I hope you're feeling better today."    Her reply was, "F--- off!"    I just sat here stunned for a few seconds.   The sweet woman didn't notice that comment immediately.  She kept posting, asking the nasty woman to be her friend.    I then posted that they can all be friends if they like, but I will not be friends with anyone who speaks that way to me.    Then the sweet woman noticed the F--- off comment and told the nasty woman she owed me an apology.  The nasty woman said there would be no apology, because she did nothing wrong.    I decided it was best to get my butt out of that conversation.  So I stopped posting.    The sweet woman said if the nasty woman was not going to apologize to me, she was leaving too, and she did.    Just a few minutes later, one of the moderators deleted the entire thread and banned the nasty woman from the group.   WOW!!!     I'm not used to being told to F--- off when I tell someone I hope they're having a better day!!    Yikes!!!

As I posted on that page yesterday, it is actually funny now.  Hmm...........then I guess we Americans DO have a sense of humor!    Laughing   I do feel badly that we won't be able to help that woman in any way now to get through this terrible disease, as she obviously needed a lot of help, but I don't think she was willing to LET anybody help her.    I think the moderator did the best thing by banning her.   I can only imagine what other things she might have said had she been allowed to stay.     I survived.   I just hope she does.

Lozza, LOVE the poem!   Thanks for posting.

Audrey

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Amanda Lynne on Tue Jun 10, 2014 1:14 pm

Audrey you are a saint still feeling sorry for that woman X
Yes you Americans do have a sense of humour we can vouch for that as you've got all the silly British sense of humour we've posted on here and joined in. Especially the fanny pack comments !!!!! Laughing 
Lozza I have always loved the poem If by Rudyard Kipling.
 Laughing 
Nice to have a bit of culture on the forum cat I couldn't find a culture Vulture smiley so it had to be a Cat !!!!
Amanda xxxx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Brigitte0 on Tue Jun 10, 2014 1:36 pm

Yep, definitely a saint and a doctor and a dignified, classy lady with a sense of humour Audrey! 

Love a bit of Kipling, Lozza -  thanks for that. 

My Internet at home has been cut off a day early; it's supposed to be tomorrow when we say goodbye to Sky who have been rubbish! And since our 3g connection is also rubbish, I probably won't be able to get onto the forum for advice, sadly :(I fell apart at the GP this morning but he was wonderful and is going to chase the Endo to find out what's happening as he's not being kept in the loop. More blood tests next week to stave off the little men in white suits coming to cart me away, I hope. I really am falling apart at the seams Sad

My daughter has taken me out to lunch so have a brief Internet connection :)Lovely daughter cheering up her depressed mum! 

Love to you all whilst I'm out of internet action! 

Love 
Brigitte xx

It's really difficult writing this on a mobile phone!!
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Tue Jun 10, 2014 2:21 pm

Well, you're all very sweet, which is why I love every one of you so much!    

Yes, we do have some good laughs on here, don't we!   That is what has kept me going on my worst days.  I will never forget the fanny pack discussion!  One of my favorites!    

I don't think that woman on Facebook understood that we are ALL suffering, but it doesn't help to get nasty with others.   Sometimes we all need to have a good cry, but then we emerge and laugh again.   We don't tear everyone else apart because we're miserable!    I think she has just sunk so low, she is having trouble getting back up.   That is so sad.

Brigitte, it's ok to fall apart at the seams.   We are all here to sew you back up again!!    Sorry you're having a bad day though with the appointment and the internet.   I'm sure the lunch with your daughter will help to cheer you up.  Hope the day greatly improves for you!    Now, please don't tell me to F--- off!    Laughing 

Amanda, LOVE the culture cat, or was it Tigerlily who invented the culture cat!   Can't have too many cats.   This from a woman who once owned 6 of the dear, little creatures.

Ok, I have something funny to share.   My daughter-in-law called me this morning to see how I was feeling.  She's so sweet!   I ended up telling her about the Facebook incident yesterday.    We talked for quite a while, and then before we hung up she told me to have a good day.   Guess what my reply was?!   Yep, I told her to F--- off!    I bet she's still laughing!    Of course, I didn't actually say the word, I did say F--- off.      Laughing is such good medicine.   I'm sure we'll both feel better all day now.  

Audrey


Last edited by Little Audrey on Tue Jun 10, 2014 8:57 pm; edited 1 time in total

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Meggy on Tue Jun 10, 2014 8:32 pm

Good grief, that's not what you expect on a support group. Even if you know you've done nothing to deserve a comment like that it can you leave you quite shocked so well done you for being able to joke about it. I hope you know her name cos if she's looking for support she might end up on here, she might end up liking you tho if she reads more of your posts:-)

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Admin on Tue Jun 10, 2014 9:32 pm

Meggy wrote:Good grief, that's not what you expect on a support group. Even if you know you've done nothing to deserve a comment like that it can you leave you quite shocked so well done you for being able to joke about it. I hope you know her name cos if she's looking for support she might end up on here, she might end up liking you tho if she reads more of your posts:-)

Mr & Mrs Admin's 'puter has a large delete button ready to be used if necessary ;-)
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Meggy on Tue Jun 10, 2014 9:36 pm

I'd better watch my step then:-)

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Admin on Tue Jun 10, 2014 9:48 pm

Meggy wrote:I'd better watch my step then:-)

Don't worry. It is a special delete key just for this forum. 
There are two padlocks and we each have one key.
The delete button is programmed to only recognise Hadleigh's (the dog) right front paw print.
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Amanda Lynne on Tue Jun 10, 2014 10:48 pm

Do we get a warning first Very Happy 
A xxxx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Admin on Tue Jun 10, 2014 10:50 pm

Amanda Lynne wrote:Do we get a warning first Very Happy 
A xxxx

Yes, Hadleigh will bark three times.

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Wed Jun 11, 2014 1:01 am

Wow, I'd better watch my language!  silent 


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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Wed Jun 11, 2014 9:09 am

Hi Lozza - just a quick reply to a while back on this string - it was nice to be reminded of all the words to IF - so uplifting.

Love Tigerlily xx

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Mon Jun 16, 2014 9:02 pm

Well, I had called the neurologist my PA referred me to. Had to make the appointment for the end of August. He couldn't see me any sooner. I couldn't imagine going through the entire summer with all of these muscle twitches and muscle weakness in my arms and legs, wondering what the heck is wrong with me! So my PA gave me the name of another neuro. I called her office. She is retiring me and not taking any new patients! So my PA gave me the name of ANOTHER neuro. I called his office. He can't see me til the middle of July. That is better than the end of August, but still not what I wanted. So I got on the old, trusty internet to find my OWN neuro! The first one I called couldn't see me til the middle of July. The second one I called was the same, but they wanted a referral before they could make an appointment. My PA is not in all this week, so I couldn't get a referral until next week, if I chose to make that appointment. Oh, my goodness, the day was not going well at all!! My left leg is KILLING me today, and one of my little kitties has a very swollen eyelid today, so we're all a mess here, which was not helping my day any! I found yet another neuro, whose office is only a few miles from my home. The girl told me they couldn't see me til............yes, you guessed it, the middle of July!!! She asked me if I could hold the line. I did. Another girl got on to talk to me. She asked me all of my symptoms and then asked me to hold. She came back on the phone and asked me if I could possibly get over to a Pittsburgh hospital next Tuesday!!! I told her I would go ANYWHERE if someone could see me!! So I made the appointment! Looks like I won't have to wait the entire summer to find out what is going on with my stupid body!

By the way, the twitches seem to be doing somewhat better. They are still all over my body, but they are less frequent now. The muscle weakness might feel a little better for a couple of days, but then it gets bad again. I still feel like there is some sort of nerve disconnect in my arms and legs at times, and they will jerk. I have been having quite a bit of trouble with nausea. I didn't have this symptom before my parathyroid surgery. I really think there is something else going on here.

I have been on the internet checking out Lyme disease symptoms, and I have just about all of them! I have over 20 of them. I realize that a lot of these same symptoms are symptoms of many other diseases and disorders, but I really want to be tested for Lyme's. I called my PA's office today to request this, but that was when I found out she will be out for the week. I really don't want to wait til next week to be tested. I left a message with her nurse. I'm waiting for a return call. I do hope one of the other doctors there will order this test for me.

I don't have the results yet for the cortisol or prolactin tests. I'm very anxious to see what they look like.

So the day is looking a little better than it did this morning! I can't wait to talk to the neuro, and he better not tell me it's menopause, fibromyalgia, or my weight causing all of this! I am not in the mood to listen to that crap again!!!

Audrey

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Kathi209 on Mon Jun 16, 2014 9:34 pm

Wow Audrey that is great, taking the bull by the horns and seeing a neuro next Tuesday is great. You must have a ppo I have this wonderful hmo that is part of my benefit package when I retired. Its good I don't have to pay for it but bad as I need a referral for everything. Let us know how it goes. Boy I hope you don't have Lyme's. Good luck Kathi

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Meggy on Mon Jun 16, 2014 9:38 pm

Excellent news. Take a big stick with you, barricade the door and refuse to let them out until they have found out what's going on (better take a flask and sandwiches in case it takes a while!). Fingers crossed it's good news.

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Mon Jun 16, 2014 10:02 pm

Thank you both. Actually, I'm hoping it is Lyme's, because that can be cured. The other alternatives cannot be. I know the procedure for curing Lyme's is rough, but at least there is hope for that. I'm praying that the twitching is all due to the HPT recovery. It would be nice if the muscle weakness is too, but I've not heard of anyone yet who had that problem post-op.

And I thought this summer would be 1 of the best of my life! I figured I would have the HPT behind me and be feeling great! What a huge disappointment!

Yes, I was very lucky to get this appointment so soon! I still can't believe it. I don't think I've ever been so excited about seeing a doctor. I really need to know what is going on! I am not used to sitting on the sidelines, and I've been sitting there WAY too long! I want to play, darn it!!! By the way, I think we'd all make a great team, wouldn't we?  Smile 

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Re: Post-op 5 months. Not what I expected, but there's hope!

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