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Hi Everyone

Post by Amanda Lynne on Thu Oct 23, 2014 1:08 pm

Hi All
I just thought I'd pop on to forum and give you a brief update on what's going on in the world of FHH.
Before I do that I'd like to say I have been trying to keep up with all your stories and have missed you all loads. I hope you are all progressing on your way to better health, whether it be pre op or post op.
Well I haven't got much news I'm afraid, I got a letter from Endo together with my Genetic results tis reads as follows.
Heterozygous mutation identified......... (Sounds like I'm a Mutant Ninja Turtle) alien (nearest I could get to a turtle)
Mutation details : 
GENE: CASR
LOCATION: Exon 7
DNA DESCRIPTION: c.2065G>A
PROTEIN DESCRIPTION: p. Val689Met (p.V689M)
CONSEQUENSE: Missence

None of this means much to me apart from it confirms I have FHH. 
The Endo didn't know any more than me but wouldn't admit that and kept saying FHH does not have symptoms.
In her letter to GP (I was copied in) she states that this patient is very frustrated about her ongoing symptoms but that she has explained that FHH would not really explain these (so why has she then ruled out another PTH adenoma !!!)
She has written to my Rhumatologist as she now thinks the balls in his court especially re the neck/head pains. 
However she has arranged for me to have a short Sycanthen test as my 9am Cortisol test was 381 nmo/L (this means nothing to me)
I think now she has the kudos of diagnosing a FHH  patient she now wants rid of me.
I have emailed her saying yes I accept I have FHH but as I have already had one PTH Adenoma is it possible I could have more, what are the other health implications of FHH, is there any relation to either of my parents health problems when they died (liver cancer Mum, Parkinsons Disease Dad) and as I was diagnosed with this whilst being her patient I feel that if she can't answer these questions then she refers me to someone who can.
My latest bloods are
Calcium 2.77
Adjusted 2.65 range 2.1-2.55

These are my thyroid results
TSH 3.09.  Range 0.35-5.5
Free T4 12.4 Range 9-22.7
Free T3 3.6 Range 3.5-6.5
Thyroid per oxidase <33 range 0-60
I don't know if these mean anything she says they are all fine. 

What concerns me about this is that I've had a raised growth hormone level ( since tested and all ok) and a low T4, one before this was back up to 11.0 with TSH of 2.54 so I'm not sure why these results are messing around.
Ok I think I've gone on enough now.
Love to all Amanda xxxx
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Re: Hi Everyone

Post by Hadleigh on Thu Oct 23, 2014 1:52 pm

Amanda are you on thyroid treatment ? Sorry can't remember.

Your thyroid levels are not great, if you are on meds then your TSH is to high and your T4 and T3 are to low, ideally they should be around here
TSH 1 T4 mid to high in range and T3 mid to high in range.

If you aren't on thyroid meds your levels are still not great but its unlikely any doc would care Evil or Very Mad or treat.

Your TPO is negative so you don't have an autoimmune problem.

The Synacthen test is not usually helpful unless you have full blown adrenal failure.

I had a frustrating chat with my GP today, my thyroid levels have gone a bit whacky since my op, she insists they are fine, I know otherwise Twisted Evil

Nelly
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Re: Hi Everyone

Post by Amanda Lynne on Thu Oct 23, 2014 2:59 pm

Hi Nelly
Sorry to hear your thyroid levels are all over the place and your GP isn't in tune with that, you are improving other than that? I hope so.
No I'm not on Thyroid meds and I did guess that I wouldn't get anywhere with Endo over levels.
I have no idea why she's doing Synacthen test she's really not interested in me otherwise, covering her own back I guess.
Amanda xxxx
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Re: Hi Everyone

Post by Jasmine2 on Thu Oct 23, 2014 3:14 pm

Yay! Look everyone - it's Amanda back with us! We've missed you .....but understand completely why you had to go for a while.

My 9am cortisol was 303 and Miles Levy said he would organise a short Synacthen test when FP had decided what to do about the parathyroid stuff, but he's not immediately concerned. He had said originally if it was above 400 no further action on it, if below 400 he would set about testing my adrenal axis in due course, if below 100 apply panic rules ..... (his very words, albeit tongue in cheek). So I guess 303 is the adrenal axis testing in due course. I suspect that may be the next course of action for you then Amanda......

Don't forget we have a research paper to hand confirming that it is possible to have FHH and pHPT - v v rare but possible nonetheless, in case you need back up evidence.

Lovely to hear from you Amanda - I've been a bit absent on here myself lately, going through one of my quiet spells again.

Jasmine x
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Re: Hi Everyone

Post by Hadleigh on Thu Oct 23, 2014 3:25 pm

Amanda your thyroid levels may well be causing some of your symptoms, T3 is very low in range and that is the active hormone that is needed by just about every cell in the body, so with low levels you aren't running on a full tank ! 

I have no working thyroid and havent had for many years so I survive on 1 tiny pill a day and I know when my levels are out but of course the doctors think they know best Evil or Very Mad. I still don’t feel great but better than last week, have got really bad backache which I guess might be calcium/bones related, if its not one thing its another Rolling Eyes

Nelly
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Re: Hi Everyone

Post by Amanda Lynne on Thu Oct 23, 2014 5:18 pm

Nelly I'm glad you feel better than last week and yes you are probably right about the back ache and calcium.
I'm just starting to wonder if the fact that I've supposedly had high calcium all my life whether it's caused me problems for longer than I've suspected or if it is asymptomatic and not linked to any other health problems.
I have given my siblings copies of genetics report for them to decide what they want to do next. My twin sister is under her GP with palpatations !!!!!!! It now seems even though she was told her calcium was normal, she's had at least 2 high calcium bloods !!!! She was told both times it was well within range:shock: 
I have spoken to my Children about it and as neither have any health problems they don't want to start investigating it at the moment and I understand that completely and respect their decision.
Amanda xxxx
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Re: Hi Everyone

Post by Brigitte0 on Thu Oct 23, 2014 9:08 pm

There you are again Amanda, how lovely to see you here again  Very Happy

As you already know, I can't add anything to the table except sympathy and hugs, because I'm good at hugs Smile I hope to see you on the sit-down comedienne circuits again soon  cheers

Love and hugs

Brigitte xxxx
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Re: Hi Everyone

Post by Kathi209 on Thu Oct 23, 2014 9:54 pm

Yeah Amanda is back with us,  yahoo.  I hope you get the right balance on your thyroid meds, I hear it makes a big difference. I would also keep tract of cal/pth  just because you did have that one adenoma. If pth climb's into the 100 range I would rattle someones cage. I have missed your sense of humor. Take care Kathi

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Re: Hi Everyone

Post by Tigerlily on Thu Oct 23, 2014 10:59 pm

Amanda - just off to bed, so will reply again tomorrow - just so glad to have you back here!

Lots of Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Amanda Lynne on Fri Oct 24, 2014 9:33 am

Hi Brigitte Kathi & Tigerlily
It's great to be back, I don't feel any better and I've had no further progress with finding out about FHH and the symptoms I have but I have been missing you all Very Happy.
Brigitte hugs are just fine by me I love you.
Kathi I'm not on any thyroid meds Endo says im fine Wink.
Tigerlily it's real nice to be back:lol:.
Love Amanda xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Fri Oct 24, 2014 1:23 pm

Hi Jasmine 
I'm sooooooo sorry I didn't see your message, how could I miss you Very Happy  I didn't mean to ignore you.
I'm pleased to be back even though like you I'm probably going to go quiet now and again while I sulk about having FHH WinkWink
I have no idea what the synacthen will show up if anything and what implications that has. Hope you get yours sorted soon.
I will deffo keep that research paper in mind but I think to be honest tis Endo has finished with me and I may move to another. I need to have a serious discussion with one of my useless GP's to see if they are on my side over this.
I am back in hideous headache/neck pain mode and am sure it's not just a tension headache but as I could only get in to see GP if I was going blue in the face, had a limb hanging off, bleeding from every orifice or some nasty contagious disease, it will have to wait until next week. 
It's lovely to speak to you too and I promise I won't miss you again.
Love Amanda xxxx
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Re: Hi Everyone

Post by Jasmine2 on Fri Oct 24, 2014 4:14 pm

Tut tut, how could you ....! Consider yourself cyber slapped and don't let it happen again Wink lol!

J x
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Re: Hi Everyone

Post by Amanda Lynne on Fri Oct 24, 2014 6:42 pm

Blimey scary Jasmine:affraid: Laughing
I've learnt my lesson I shall write my lines, 
Don't be rude to Jasmine.
Don't be rude to Jasmine.
Don't be rude to Jasmine.
Be rude to Jasmine.
Rude to Jasmine.
To Jasmine.
Jasmine.
.
Love Amanda xxxx
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Re: Hi Everyone

Post by NancyMi on Mon Oct 27, 2014 3:09 am

I still wonder why, if you do have FHH, and that is not supposed to be symptomatic, why you are symptomatic.  I did not see a PTH level with your other blood work.  Was that done? 

So glad to see you back here. 

I have not been on lately.  I have not forgotten any of you.   I've just been somewhat down and then last week the worrisome symptoms I had came back.  I allowed my self to get upset about how the ebola travelers are being handled here.  It just seems so blatantly obvious to me that they should be quarantined for a while.  Then for some reason, the stress of this topic seemed to compound the nagging symptoms I am having. 

Just hoping you are not feeling too bad Amanda.  I am also wondering why your growth hormone is up.

Thinking of you,
xxx, Nancy

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Re: Hi Everyone

Post by Amanda Lynne on Mon Oct 27, 2014 7:08 am

Hi Nancy
I don't know why I'm so symptomatic, is it a myth that it has no symptoms or am I going to feel like this for the rest of my life Sad
Or is there something else causing this. If I have had FHH all my life why have I only had these symptoms for about 5 yrs ? Why not before ? 
I wish I had got the chance to ask the Endo these on my last appointment but I was in a bit of a state and couldn't get my head together enough to think straight.
I bet my appointment in Jan 2015 will be back with registrar as Endo will have lost interest.
My PTH wasn't done on last bloods, I have more to do just before I see Endo !!!! again.
I'm so sorry you are feeling down and I understand when you say what's going on in the world is highlighted when you feel like this.
I'm having constant neck/headache and pain under my foot, I think this may be metatarsalgia but why I have this I don't know.
I guess I will have to go and see useless GP !!!!!!!
Lovely to hear from you too.
Love Amanda xxxx
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Re: Hi Everyone

Post by Brigitte0 on Mon Oct 27, 2014 8:20 am

Oh Amanda, not the useless GP again! Maybe try a different one in the practice for your foot at least. It's a pity your PTH wasn't done as that would have been an interesting comparison to your calcium level. I always think that they are failing to understand anything at all if they don't take PTH levels! It's awful that you've never got to the bottom of why you are clearly symptomatic and have already had an adenoma removed. It doesn't make sense. 

Nancy, I'm sorry you're feeling so bad  Sad I think stress does make your symptoms worse and it seems relentless. Sending you many cyber hugs. 

Love and hugs 

Brigitte xxxx
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Re: Hi Everyone

Post by Lucycatnaps on Mon Oct 27, 2014 9:01 pm

Hi Amanda,
Just wanted to add that it is lovely to see you back again.  I have been kept pretty busy recently and in between just have been so tired out and frustrated with the lack of progress on anything.  I do remember that when I saw Mr P back in May and he voiced the idea of FHH by my  24 hour urine test that he said they used to think FHH caused no symptoms but now they think that it may indeed cause symptoms.  I do hope they can get to the bottom of all your symptoms, the foot pain
must be really unpleasant, I am just wondering if it could be planter fasciitis?? It was one of the first symptoms I had when my thyroid went hypo and as soon as I started Thyroxine it went.
Glad to see you back again 
Hugs Sue
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Re: Hi Everyone

Post by Little Audrey on Mon Oct 27, 2014 9:28 pm

Hello All!    I'm sorry I too have not been on here much lately.    Guess I just needed to be alone for a while too.    Tired of dealing with it all!    I have missed you all very much!

Amanda, It is so nice to hear from you again!   We all understand why sometimes we just need to drop out of sight for a bit.   I am sorry you are dealing with so much at this time in trying to grasp all that the FHH diagnosis entails.   I agree that there is still a possibility of an adenoma in there, so keep an eye on that.     Please keep us posted when you feel like getting on here and doing so.   In the mean time, prayers are on the way.

Nelly, I'm sorry you're having trouble with the thyroid hormones.  I know how tricky it can be to get those regulated.   I'm having some trouble with that myself.   I'll be posting about this on another thread shortly.   Good luck!

Jasmine, if you do end up being diagnosed with adrenal issues, maybe we could start comparing notes regarding that problem too.   If we have to suffer, we might as well do it together.   Smile

Brigitte, you keep those great hugs coming!    When we're suffering, there is nothing we need more!

Kathi, I agree with you about Amanda keeping an eye on her PTH.  There is still that chance of an adenoma, and I have learned through experience over the years that you can't always rely on your doctors' opinions or diagnoses!

And I agree with you too, Nancy.  Something does not seem right with Amanda's diagnosis since she has so many symptoms of pHPT, and FHH is supposed to be asymptomatic.   Lots to think about here.

I hope I didn't forget anyone.   If so, I'm afraid I might be getting cyber slapped too!   affraid       lol!

I am going to post now regarding my neurology appointment.     Missed you all!   Love you all!

Audrey

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Re: Hi Everyone

Post by Amanda Lynne on Wed Oct 29, 2014 1:31 pm

Hi Sue & Audrey
It's good to be back, re the FHH I just wish I could find someone who specialised in this damn disease, instead of being told by useless Endo that there are no symptoms !!!!
The foot pain eases off and then comes back out of the blue, I don't think its plantar fasciitis as its directly under where toes join foot and next to ball, I have a feeling it might be metatarslgia, I'm going to see if I can get x-ray done to see what's going on.
When I'm at useless GP's I've got a huge list of questions I need to ask, the only problem is I think I will probably be met with a blank stare as usual.
Love Amanda xxxx
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Re: Hi Everyone

Post by Lucycatnaps on Wed Oct 29, 2014 8:56 pm

Hi Amanda,
I totally understand your frustration, the fact remains that you are still getting debilitating symptoms and not a lot is happening to address them.  It seems as if they think ok, FHH is a benign condition, we do nothing about it.  That is how I have felt with my neck lump, it has been up for a year now and they say it is a reactive lymph node so therefore we do nothing instead of finding what is causing it to react!
The weird thing is since I started Ranitidine mid Sept it has shrunk a little.  
For Kathi,
I honestly do not know why one endo says I am suggestive of PHPT as opposed to FHH.   From all the reading I have done it seems pretty much impossible to differentiate the two just based on clinical tests and no genetic testing.  Even genetic testing is not foolproof.  
I did a 24 hr urine test in Feb and it showed a low CCCR, Mr P picked up on it and mentioned possible FHH but also that I needed my Vit D tested in case that was low as that also causes a low urine calcium.
In June it was 42 so it was probably much lower back in Feb when I did the test and so they put me on low dose D with a view to repeating the 24 hr test when replete.  I had to do it way too early but my D came up to 67 by September, still not replete but better.  My urine calcium increased and my CCCR just scraped over the cut off.  I have never been a great calcium consumer so my dietary intake is pretty low.  The horrible locum just read Mr P's letter mentioning FHH and said that only people with elevated urine calciums above normal had PHPT and I must have either FHH or "something else" causing my raised calciums. When I countered that a third of people did in fact have normal urine calciums he would not be swayed.  I have since spoken to my original endo who feels that it is suggestive of PHPT as he said he felt my PTH would drop whilst taking Vitamin D, instead it has gone back to high normal.  I suspect my D is dropping again as the thirst is making a comeback and I do feel stressed at times. 
Take care, Sue
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Re: Hi Everyone

Post by Amanda Lynne on Mon Nov 03, 2014 1:09 pm

Hi All
I've not posted for a few days as I've been really busy with family stuff and work is a bit manic atm.
I have however been checking peoples posts and it really does seem that the thoughts of PHPT being linked to many other conditions and diseases is really a strong one, I even wonder if my Fathers Parkinsons disease/dementia may have been possibly misdiagnosed, I don't remember him ever having a brain scan etc and he never really had the tremors (a classic Parkinsons symptom) its just a thought. I also remember my Mother saying my Fathers Mother suffered a lot with depression and when she died she seemed quite senile. Also my Mothers Mother suffered with depression. 
It really makes me wonder if any of them were misdiagnosed and they may have had HPTH all along.
Anyway I'm off to see the Rhumatologist this afternoon, I think Endo is thinking he holds the answers to all my symptoms !!!!!!!!!
I'm taking some paperwork with me including my email to Endo asking difficult questions about FHH's health implications etc and if she can't give me an answer then refer me to someone who can. I will speak to him about genetic counselling as Endo obviously doesn't think it necessary. Also I'm going to ask about my foot pain he may be able to get to the bottom of it !!!!
Just in case he wants to examine it, it is buffed to within an inch of its life and nails have been painted affraid  
Didn't want to get out a manky tootsie wootsie and frighten him off, yes I have done the one just in case I have to bare that as well, yuck I'm not keen on my feet being touched anyway.
Tomorrow morning I have short synacthen blood test to do and on Wed I have GP to see re everything. What an exciting life I lead plus I need to fit in work and a blooming firework party my other half has decided we need to have!!!!!
Think he is having a mid life crisis, I'll be inside doing hot dogs, baked potatoes and home made soup and leave him to "play" with sparklers etc. 
Tazz will be tucked up in my Son's room, she's going a bit deaf any way and they don't really bother her. I'm not so keen.  What a Face
Love to all Amanda xxxx


Last edited by Amanda Lynne on Mon Nov 03, 2014 1:13 pm; edited 1 time in total (Reason for editing : I'm a wally who can't spell.)
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Re: Hi Everyone

Post by Tigerlily on Mon Nov 03, 2014 6:59 pm

I agree with you, Amanda - the depression and the cognitive symptoms of PHPT do seem to be represented in your parental and family picture. I do hope you are able to discuss this with the rheumy and get somewhere. It was a rheumy who was asked by my GP to comment on my symptoms and he said it was quite clear from the musculo-skeletal aches and pains along with the blood test results that I had PTH from an adenoma.

Your foot problem sounds the same as mine - a Moreton's neuroma, maybe, causing intermittent acute pain. A referral to the local foot clinic would be in order, as well as an ultrasound and an X-ray of said foot. If you could get your hands X-rayed as well, they might show some sub-periosteal bone erosion (see: Imaging in Hyperparathyroidism) which is a clincher for PHPT.

Good luck with the Bonfire Party - keep well out of the way and drink a lot - it's the only way to get through these things!!

Keep us posted on this week's developments - Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Brigitte0 on Mon Nov 03, 2014 11:16 pm

Best of luck with your synacthen blood test tomorrow Amanda. I hope your rheumatologist appointment went well and that you were able to find out more about everything, especially the FHH. Also hope there was some indication that you would be referred for genetic counselling since I think you should have been offered that long ago. I trust your sparkling toes created a brilliant impression!! Good luck with the GP, because seeing one is always a fun ordeal and you always need luck. Enjoy the Firework Party if you can! I'm glad you don't live round here since we spend all evening applying various comforting remedies or distractions to or in the vicinity of our poor dog and hoping her fear doesn't bring on an epileptic fit. The fireworks seem to get noisier every year.

Incidentally Tigerlily, I had a hand x-ray just before my op because of a lump on the pisiform. Apparently whatever it is is not bone so it's likely to be a ganglion after all. However, the subject of sub-periosteal bone erosion was bandied about because of the slight difference in the bone compared to the x-rays taken a year ago when I broke my finger. They decided against it in the end and indeed, since the op, my fingers have actually looked much more normal and the knuckles don't look so large. In fact in the last couple of weeks, I can actually put on my wedding ring and I haven't been able to do that for a year! I'm shackled again!!

Love and hugs

Brigitte xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Tue Nov 04, 2014 7:07 am

Hi Tigerlily & Brigitte 
Thanks for your comments and support.
Rhumy support wasn't an awful amount of help. He just sat there and listened to me wrote a few things down but didn't really say a lot. He then looked at all my bloods he took previously re inflammatory markers. Nothing showed up so he said he didn't think it was auto immune related unless it's a certain type which is very difficult to identify !!!!!
He said he thought because FHH permanently raised calcium it was more likely to be that but because I kept on about head and neck pain he said it would be a good idea to give me a steroid injection in arm to test out if it made any difference to any of my pains (it would indicate a hidden auto immune problem if this helped in any way) I'm booked in for next Thursday, I'm unsure about this (any thoughts?) and I will be doing some research. He didn't have any comments about family connections re previous health issues but he did say he thought I should have been offered further advice re genetic result, however he didn't know how I should go about this and suggested it was best to speak to GP !!!!!
He examined my foot and said he thought it was metatarsalgia which is what I thought, when I asked why I had it he said it could be AGE related !!!!!! I'm only 51 for gods sake, it's not weight related, I don't walk around in high heels all day and I don't jog but he didn't offer any other explanation or cure !!!!
So I don't know where this leaves me, do I have the steroid injection or will it cause me other problems. 
I have synacthen test this morning then GP tomorrow, I'll keep you posted but I don't hold out much hope for any help from any of them.
Toes looked fab, unfortunately I'd put a new pair of socks on and when I took my boots and socks off my foot was covered in black fluff and it looked like I hadn't washed it for about a month !!!!!!affraid
Brigitte the fireworks aren't big bangy ones so hopefully they won't cause any pets problems, I'd hate that.
Tigerlily I would drink but it makes me feel very ill and I have a shed load of typing to do on Thursday so it will be tea or coffee for me, how exciting. Luckily it's only family coming round and they know what I'm like.
Love Amanda xxxx
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Re: Hi Everyone

Post by Lucycatnaps on Tue Nov 04, 2014 12:13 pm

Hi Amanda,
I probably am not the best person to give you advice re rheumatologists but as you have already said, I would do some research before deciding.  Prior to having my hip replacement I ended up with bursitis and the then rheumy was going to give me a steroid injection into my hip but as I attended the appt alone, he told me he would rearrange as I needed someone with me to drive home.  I then saw the locum orthopod who said he would never inject a hip as it made it far worse in the long run, ie the benefits would be short lived.  It may be different for knees necks etc.  So two completely different views on steroid injection and I went with the ortho view and did not have it done.  I have seen a different rheumy every year for the last eight years and they all said treating my come and go symptoms was worse than living with them, I always find them wishy washy and vague, never any answers for my questions.  I really sympathise with the foot pain,  my dd's GP in London diagnosed her with Morton's but when she finally got it x-rayed she had broken her big toe!  She has high arches which is why he thought it was Mortons.
Thinking of you and hugs,
Sue x
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Re: Hi Everyone

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