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

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!    

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

Great news, Audrey - only just seen this post today.

We'll be waiting to hear all the details!

Love from Tigerlily xx

Thanks, Tigerlily. I am thrilled about this! I'm afraid the news might not be good, but at least I'll know what's going on.

You know I'll be posting all about this appointment when I get home next week.

Audrey

Good news Audrey! Hope the journey isn't too difficult and you stick to the chair like glue until you get some answers!

Love
Brigitte x

Thanks, Brigitte. I think I might have to take my granddaughter's softball bat with me to this one!    Hopefully, my doctor will be a very nice, caring doctor who enjoys speaking with me, takes his time, and really wants to help. Those are very hard to come by, but my fingers are crossed.

Audrey

Yes, expect that, Audrey, and you might be able to "magic" one up.
I do hope so.

Love from Tigerlily xx

Well, a bit of good news today. My PA's office called. She did order the test for Lyme disease! It's in the mail. I was so afraid she might be getting tired of me requesting different tests, she might just decide not to do this for me. I wonder if maybe she too is thinking Lyme's might be a possibility considering my symptoms. Will be going soon to have more blood drawn for this. I'll be surprised if I have any blood left! I'm starting to feel like a pin cushion!

I haven't received the results yet from my last bloodwork. That was for cortisol, prolactin, and sed rate. I will post as soon as I receive those results.

Had a wonderful afternoon with my oldest granddaughter today. She came down to swim with me. We had a great time swimming, playing, and chatting. Her birthday is next week. She will be 12. I am sure going to miss these times when they are grown.    I still feel like crap, but my heart feels wonderful! What a great day!

Audrey

Glad you had such a great day, My hats off to you and Jasmine sounds like you have your hpt warrior armor on also. I understand now what you mean on the lyme disease. Good luck on the test.

Great news that you had such a great day with your granddaughter, Audrey.
The spirit was willing and the heart felt wonderful - that is fabulous!!

Good luck with the Lyme test (and the others). I got to the stage of being tested for Lyme as well (negative) as I was bitten by something in the Frombork !!      (in Poland!)

It would certainly answer some questions for you, though.

Love from Tigerlily xx

Well, my latest lab results have arrived.    I'm a bit disappointed.   I thought for sure my remaining symptoms and the new ones (total-body muscle twitching and muscle weakness) were being caused from a pituitary problem.  It looks like they are not.   When my cortisol was tested 3-1/2 years ago, it was 19.8.   Normal for my age is 4.0 to 22.0.  I thought for sure it would be higher this time, but it was not.  It was only 12.2!  

I also thought my prolactin might be high now.   It was 7.1   Normal is 2.0 to 20.0.    

My sed rate is still slightly elevated at 22, down from 25 last month, which is surprising since my left knee has been swollen and throbbing for a couple of months now.   Normal sed rate is 0-20.

My B/C ration is elevated at 27.  Normal is 6-20.   It was 25 last month.

My glucose has risen from 89 a few months ago to 97!   I'm guessing that might be from taking so much D-mannose (even though it is said not to be readily absorbed by the body!) to prevent UTIs.   So now I might not have as many UTIs, but I'll end up diabetic?!!!

My magnesium was not tested this time, but it will be in a few days when I go for more bloodwork ordered by my endo.

There is a bit of good news!   My calcium was 9.2 for the second time since surgery.   However, it is always much lower when checked in a panel (as I have mentioned before on the forum) than when checked separately.   The last time it was 9.2 within a panel, but it was also tested separately at that time, and it was found to be 9.9.    Well, at least I know it hasn't risen and is probably still at 9.9.   It would be nice if I also had a PTH to go with this calcium check, but that was not tested this time.   That will be tested in October before my next endo appointment.

I am happy to know I don't have a pituitary or adrenal tumor, but I would sure like to know what the heck is causing all of this muscle pain and weakness, joint pain, muscle twitching, muscle stiffness, tendon pain and stiffness, and extreme fatigue!!!    Are these symptoms all a normal part of HPT recovery?   Are they due to my thyroid possibly not being properly treated?   What is causing them?!!

I will be going in a few days to be tested for Lyme Disease.   My endo has ordered thyroid function to be checked again at that time also.   I guess if nobody can figure out what is wrong with me, it will either get better on its own, or I'll just have to continue suffering and die with it all.   Darn it, I was having a good day until I saw these results!  One more dead end.

Audrey

Was supposed to have my first appointment with the neuro on Tuesday, but they called and canceled. Doctor went home sick. Probably went for care at the golf course!    Nah, golf course is probably too soggy.

Hubby was not too happy, as he had worked a half day (6:00 to 10:00) so he could take me to this appointment. They called and canceled at 10:30! Appointment was at 1:20.

They told me the soonest they could see me was July 28th. I hung up the phone and was not happy. I called back to see if I could get something sooner. The woman told me someone had just canceled, and they could see me at 8:40 the next morning (yesterday). I called my husband to tell him of this. He said there was no way he could take off another morning, so I'd have to change the appointment. Double     I called back to change the appointment. They said they could see me next week. I called my husband to tell him, and he said, "Well, if you really want to go tomorrow, I can probably take off." Triple      I was not about to call them back AGAIN, so I will be going next week. As my muscles twitch and jerk, and I feel like I'm going to collapse, I march on! Well, maybe I'm crawling on, but I'm on my way none the less!

Ok, back to my cleaning here. The big weekend is nearing! Lots of fun and exhaustion with family the entire next week!! Can't wait to see my brother and sister and some of their kids! Haven't seen them for a year.

Audrey

Oh, Audrey, what a pantomime or a cat-astrophe, more like      !

But next week will soon be here - so march/twitch/crawl on for now. It sounds like a neuro problem to me. Don't forget that pituitary adenoma can sit on cranial nerves and cause twitching - that's what I'm looking at for the moment.

Take it easy with the cleaning - enlist help where you can. Heck, PAY for help if you can!!

it will be a wonderful family time - do enjoy it!

Lots of Love from Tigerlily xx

What a series of   for you Audrey! At least you do have an appointment not too far away. 

Have a lovely weekend with the family and take care of yourself. 

Love and hugs 
Brigitte xx

Well, the 4th of July holiday is over, my siblings and their families have all gone home.  It has been one of the most exhausting couple of weeks of my life, but definitely a couple of the most fun!!!

I was dealing with yet another UTI this past weekend, which was very painful, but once I finally caved in and started the antibiotic, it very quickly became bearable, and I could enjoy the rest of the time with my family.   I guess the D-mannose is obviously not going to work for me in preventing these things.  I don't know what I'm going to do.  I really don't want to start taking a daily antibiotic.   Unless I intend to do that for the rest of my life, what good is it going to do?   They're just going to return as soon as I stop.  Oh, how I wish somebody would figure this out and help me!!!!!    I do think there is some deformity with my bladder that is causing the problem or maybe the position of my bladder that is causing the problem.    The infections stopped for 3-1/2 straight years when I had a bladder lift 8 years ago, then they started again.  My doctors tell me my bladder is still where it belongs at this time, so that is not the cause.    I don't believe them.   I'm wondering now about maybe diverticuli as the possible cause of the recurring UTIs.    I need answers!   I think I need a new urologist who is willing to find the cause of the infections instead of just treating them!

I did see a neurologist for the first time on Thursday.   The appointment went ok, I guess.   I was not thrilled with this man's personality, but he himself was not well, so I'm hoping that was why he was not very friendly.   He seemed to have to struggle greatly to smile during the visit.   I decided I would give him another chance, as I don't always judge people totally by first impressions, but I was doubtful that he would be one of my favorites.

We discussed my total body twitches first.  I explained that the twitches are still present in some areas, but they have subsided greatly.   I told him that the severe muscle weakness in my arms and legs is still present but has also greatly improved.   He had some GREAT news regarding all of this!   He told me he does not think I have ALS or Parkinson's!!!    This was such a HUGE relief!!    He said he too feels that it all is probably being caused as part of the recovery process of the HPT.   He suggested several other possible causes, and he ordered some bloodwork to either rule them out or confirm them.    Among his suggestions were thyroid issues (which I do have), lack of sleep (and that's a REAL possibility), vitamin deficiencies, and Lyme disease.    I have a script to be tested for Lyme disease.  I've had it here for a few weeks, but wanted to wait to go for that test until I saw the neurologist, to see if he wanted to also rum some bloodwork.   I figured I'd just get it all done at once.

He did diagnose me with peripheral neuropathy.   I could tell something was wrong by the look on his face when he was performing the tests for that.   I don't know if a disease or other disorder is causing this, or if this is just the way I am made.   All of my life (and this is going to sound strange, I know), I have enjoyed sticking myself with needles, pins, and other sharp objects.   I also noticed when pressed sharp scissors or knives to my skin, it didn't hurt.  It actually felt good.   I also have always enjoyed stabbing my gums with my fingernails, and I enjoy dental shots in my mouth.    My mother used to call me a masochist.   She told me to stop hurting myself.  I always told her I was not hurting myself.   These things actually felt good.  She thought I was nuts.     I had always said that maybe my nerves were very deep because of this.   I really had no idea why I was like this.   Also, many times throughout my life I have been burned on hot pots and pans and my iron, because I can't feel that I am being burned.  By the time I feel any burning sensation at all, it is already blistered.    I jokingly told the neuro it's too bad my neuropathy isn't worse, because then maybe I wouldn't ever feel any pain at all!  

I had a discussion with this doctor that really ticked me off.   He asked me if I have been having any fevers or chills.    First I mentioned that over the past year or so, if I go longer than 4 hours without eating, I get VERY cold.    It's so bad I'll start to shiver.   Sometimes I get very busy working on something and don't realize it's time to eat.  That is, until I get extremely cold and uncomfortable.  Then I'm reminded.   I told him that over the past few months, I also have spells where I feel feverish for weeks at a time.  When I check my temperature, it's around 98.6 or 98.8.   I mentioned that my normal temperature is only 97.1, so I'm guessing when it is at 98.6, I probably do have a little fever.   He told me that 97.1 is a normal temperature.   I told him I realized that, as it was MY normal temperature, but again I suggested that when my temperature rises to 98.6, which is also considered normal, I probably do have a slight fever.   He got a little snippy with me at this point and said something VERY stupid.   He said, "That's not a fever; 104 is a fever!"    I could have continued arguing with him, but what would have been the point?   I knew I wouldn't get anywhere.     I just sat there and stared out the window.  I'm sure he could tell I was upset.    

The main reason I was not thrilled with this guy is that he didn't seem to want to hear ANYTHING I had to say.    He was only interested in what I had filled out on the papers they had mailed me before my appointment.    Before my parathyroid surgery, for 3 straight years, I had a very sharp pain in my left temple.   I would think a neurologist would be interested in that.    So I mentioned that to him.   He barely lifted his head from looking at my papers, sort of glanced over at me, and then looked back down and continued reading.   He never said a thing.   This is not my kind of doctor.    I wasn't able to discuss much of anything with him.   He examined me and told me what he thought.  The end.  

As I said earlier, I had decided to give him 1 more chance to redeem himself, so I proceeded to make a followup appointment with him.   I did ask the woman at the desk if I could see him at his other office, as that location is much closer to our home and easier to get to.   She told me that he didn't have an office at the location I was asking about, but he did have an office in another community, which is also not close to our home.    I opened the door to the waiting area and asked my husband to come in to discuss this with us.   He said he really didn't want to travel to that location either, but he said he had just overheard someone in the waiting area saying they saw 1 of the doctors in this group at a location about 1 mile from our home!    We inquired about this.   Turns out this doctor does have an office right up the street from us!    That worked well!    So I now have an appointment with him in August.    If I don't care for him any better than I do the doctor I saw on Thursday, I still have an appointment with yet another neuro that I made about a month ago.   I won't cancel that one yet, just in case I'll still need to see that doctor.  

So I guess this was a good appointment since it ruled out 2 things that were greatly concerning me, ALS and Parkinson's.    I have 1 uncle who had Parkinson's and is now deceased.    I have another uncle who has Parkinson's now.   They are both my dad's brothers.    This was really frightening me!

I will be going for the new bloodwork on Tuesday.     Onward we go!!

Audrey

Hi Audrey
Glad you have been told that you don't have ALS or Parkinsons my Father had Parkinson's & Dementia when he died, awful disease.
I'm not sure what to say about your appointment I just hope he knows what he is talking about and tests you for everything.
The needles and sharp things is a bit strange  
Let's see what happens with your bloods on Tuesday.
Sorry it's a bit brief but I'm having trouble with reading stuff and converting it into anything I can make sense of in my brain, as soon as I read something it gets jumbled up and I can't take it in. Don't you just love this brain fog   
Amanda xxxx

Thanks for your reply, Amanda. Yes, I know first hand that Parkinson's is awful! I watched my uncle suffer for years before his death. I'm so sorry to hear that your father was inflicted as well. That must have been hard for you to witness.

Well, I did want to clarify that I don't sit around and stab myself all day long. : ) I just seem to get burned fairly often now because I don't realize I'm touching something hot.

As far as your brain getting jumbled and not being able to make sense of my post, I would like to say that maybe if my post didn't look more like a book instead of a forum post, it might have been easier for you!    I'm sorry it was so darned long. Believe me, I also understand about the brain fog. My brain still is not functioning normally, and it is very frightening. I'm hoping, at this point, that there is something else going on other than the HPT crap, or I just may end up in Tampa again! Although, if that would fix the remaining symptoms, I'll start packing! I have no memory, my brain is all fuzzy, and I can't concentrate on anything. This could be caused from several things. I just hope they figure out soon what it is!

Audrey

Hi Audrey

Have a look at the peripheral neuropathy pages on www.patient.co.uk
to see if there are any clues there. (Charcot-Marie Syndrome??)

The first thought with peripheral neuropathy is diabetes mellitus Type 2, but I expect you've been tested for that. Might be worth getting tested again, as peeing a lot is a symptom, as are poorly feet.

It does sound as though there is something else in the background - maybe connected to the paint episode.

Hope the new doc comes up with something. Not having to travel so far will be a bonus, too.

Love from Tigerlily xx

Hi Audrey

I'm sorry there are so many things going on, but it can't be bad that some things have been ruled out.

I've been in a bit of a pickle these last weeks and the brain fog stuff is at the forefront of everything, so forgive me for not saying more. It's just that by the time I read down a long post, I can't remember what was said earlier and the more I go back and look, the less I seem to be able to grasp a meaning to anything. I can't catch up with myself. I think the sun makes me worse and I've gone off it. I know you'll understand, but I just want you to know that even when I'm not around much, I do try to read everyone's posts and I'm with you in spirit and wishing you lots of love and hugs. Hugs are good and I can do good hugs!

Take care and good luck with what comes next.

Love and (more) hugs
Brigitte xx

PS Has anyone noticed that lots of us are feeling quite pants at the moment? I'm both encouraged (that I'm not going crackers alone) and appalled (that nothing much is going right for everyone. Or if it is, it's drearily slow).

And if it wasn't for spell check, this whole post would have been gobbledegook and confused you all!

If it's any help, Everyone, Mercury has been going backwards in the heavens for some time. Silly twerp has only just righted himself and is going forwards again now. Being the god of communication, all of it can get terribly mixed up when he goes backwards, so we now have the fall-out of his retrograde period to deal with!

Simples! (Not!)

Love from Tigerlily xx

Well, no wonder we're all screwed up!!!   

Yes, Tigerlily, we have been watching my glucose for years. About 8 years ago it was up to 112. Normal at that time was 70-110. It was flagged at that time. I was diagnosed as prediabetic. Diabetes does run in my family, so we've been watching this. However, since that time 6 years ago, my glucose has continued to fall. I have not changed anything at all, except that in that time I have lost about 12 pounds. I haven't changed my diet any either. I'm guessing that might be from the thyroid meds and getting my thyroid functioning a little more normally. This past February my glucose was 89. In March it was 95. In May it was 92. And in June it was 97. I did have my A1c checked a couple of years ago. Those results were normal. I don't know the results right off. I'll have to look it up. I'm not liking the looks of that 97 glucose level. I am wondering if my glucose has gone up a bit due to the amount of D-mannose I've been taking for UTI prevention. I know they say D-mannose is not readily absorbed by the body, and it is simply flushed out. I am wondering if that is true.

Thanks for the love and hugs, Brigitte. Yes, I understand perfectly what you are saying!! I can't keep my own matters straight. It's very hard to try to totally grasp other people's problems. Sometimes our brains and our bodies just won't let us do the things we'd like to!

Audrey

I'm feeling the brain fog too, big time, and seemingly talking scribble and in riddles! Mr Jasmine and I are relaxing and watching the tennis and a short while ago I looked over to him and from out of nowhere said "have they given you any indication what time you have to be at the hospital?" It felt as if I was hearing someone else saying it - the words were coming out of my mouth but it had no meaning. Mr J gave me the "yer what .....?" kind of look and I burst into tears. If I'm honest, whilst it might sound comical it actually scared me, and I'm still feeling uneasy about it. It's the first time it's happened like that - I'm always getting muddled and mixing up my words and forgetting what I want to say but I usually know what I mean and remember eventually, but this was something else, like 'automatic speaking' that mediums or spiritualists do, as if someone was speaking through me if that makes sense. Very unsettling.... and last night I had the noise in my head again in the twilight between wakefulness and sleep, this time it was like one long ring of a phone. It jerked me back into wakefulness as I was expecting to hear the phone ringing but it wasn't, it was a phantom noise. Scary stuff. Hope I soon get the results of my MRI.

I suppose it's all relevant to the fact that I have been very symptomatic lately, lots of bone pain in my hands and arms and today I'm sooooo tired, my legs feel like lead and I feel spent and exhausted. We're all having such a tough time at the moment, I agree! For goodness sake Mercury get your a*se in gear!

Jasmine x

Jasmine it's spooky I'm having very similar problems I was sat down last night with other half and I asked him what time you getting up for work tomorrow, knowing full well it was Sunday and he wasn't working. I knew it was wrong and it was nonsense and yet I couldn't stop saying it and I even said well what time ? When he said what do you mean? 
It's not the first time and I too have had a good sob when I can't explain what's going on. It's so frustrating it's like someone else has taken control of my body.
I had a weird noise happen this morning like a bang I went down stairs and checked everything out. Went into utility room and smelt a burning omg the boiler had caught fire inside the cover !!!!!
I now have no boiler until Friday. Thank god we still have Imersion heater ( probably wrong spelling !!!) otherwise we would be in big trouble.
I hope you get results of MRI soon and you get to the bottom of this. If you get the answers I might be right behind you.
Take care lots of love Amanda xxxx

Isn't it strange how our paths seem to be running so parallel with shared experiences for several of us, like the universe is pulling strings to bring us together to share the journey - there I said it, the J word, next I'll be rattling on about the roller coaster we're all on lol.  But we are aren't we ..... it's one scary, bumpy, up and down, emotionally and physically turbulent ride of a lifetime! Never did like roller coasters .......!

Jasmine x

Oh and that's another thing you've reminded me of Amanda, I often smell burning and turn the house upside down looking for the fire, and drive my family mad asking if they can smell burning, and of course they can't! Sorry about your boiler Amanda, bet that's one time you wish you had imagined it, scary! Thank goodness you found it before it caused even worse damage.

Jasmine x

Share the champers and cake at The Ritz - more like!!

But this is all very odd. At least Amanda's noise was something tangible - and thank god you went to investigate, Amanda! Sorry you've no boiler, but it was best to try and source the origin of the noise.

God knows what the origin was of the gunshot I heard recently - should have looked out the window - I expect the neighbour was prostrate on the front lawn and they'd cleared him away by the time I looked out in the morning!

The things about the hospital and getting up for work are also at least relevant to your present situation. Don't think you're going potty ladies, just well-immersed in it all at the moment. And your phone ringing, Jasmine, was probably Bangalore on the wrong time scale just wanting to check that you were in so they could call again later to take control of your computer!

You're right though, it is a roller coaster ride, and some of us defo seem to be riding in the same car.

I'm not belittling any of it because I'm hearing things too, and it's quite worrying when your endo says yes, that is a symptom of a pituitary problem so we'll put you in for a pituitary MRI, and if nothing shows up you might have a brain tumour, so then we'll pass you on to a neurologist.

I'm not so sure that medics are allowed to say that to you as blankly as she did. I've convinced myself that she did it because she was badly wrong on the PTH front and was getting some sort of revenge. (Anyway, I'll deal with her later.)

So worry not, Ladies. I think it's just a combination of Mercury retrograde, and everything coming to a head - so to speak, sorry.

We're all in this together and we have so much loving support on this forum that we shall all be fine eventually. But as you say, Jasmine, it's been a long ole journey so far.

Lots of Love from Tigerlily xxxx

All VERY interesting! I don't have time to comment right now. I'll be back later to do so. Getting ready for my urology appointment today, which I am NOT looking forward to. Will be discussing (and probably arguing) with the doctor as to why it is probably not a good idea to take a daily antibiotic, but also trying to figure out how to stop the recurrent UTIs if I don't. Oh, woe is me. So tired of appointments and tired of a body just that refuses to function normally.   

Audrey