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Date: 03.06.2010
From: paul

Subject: Totally confussed

Let me first appologise in advance about my spelling.

I dont really know where to start so i am going to start at the begining so get your self a cup of tea and somthing to eat as this will seem like a novel.

This is regarding my wife -: In November 2008 my wife went to the doctors with lower back pain, he gave her tablets and sent her on her merry way. After about 6 month the pain got a little worse so again went to the docs and again was given pain killers, over the next few month it got worse and worse but did not stop her from working, she loves going to work and in all the time i have known her she has never been without a job, from Febuary 2009 she was working at a cloth finishing firm and her job was to lay cloth out in a certain lenghth, fold it, pack it, and place on to palets, obviously this wasnt doing her any good due to her back problem.
In November 2009 she was doing her job as normall but her back really started to give her really bad pain and it went into her hips, another visit to the doctor and he gave her a sick note for 4 week, her walking began to suffer and she could only manage to go to town but get a taxi home, 4 week passed and again back to the doctors, another 4 week note pluss a x-ray was requested, she went for the exray and they showed spondylotic changes Osteo-arthritis of the spine and hips, by the end of March she was so bad her walking was restricted to about 30-40 yds before she had to stop because of the pain it was also around this time that i had to start helping her in the mornings to get out of bed and help her with her lower half dressing. By the end of may work was getting a little frustrated with her abcence so requested a medical report to see if there is a possibility of coming back to work but the report was not in my wifes favour and she was laid off.

THIS IS A COPY

This lady has complained of lower back pain since November 2008 and has had time of work intermittently ever since. A x-ray of her lumbar spine done on 19th feb 2010 showed spondylotic changes which means that she has osteo arthritis of spine and hips.
With this condition, bending lifting and doing manual work will not be suitable for her. Sometimes, she may feel better and able to manage this work but at other times even trivial bending ect can make her back very painfull, most of the time she is in continuous pain.

The pain got so bad her doctor ref her to a specialist at Burnley in lancashire, a doctor Simon Morris. We went to see him and he did a examination (made my wife very sore)) he asked lots of questions and he said he was going to req the doctor to proscribe Amitriptyline, i have googled this and its a dipresion tablet and also helps children with bed wetting, who is this doctor i thought, anyway the report from him came back to the doctors and i got a copy.
Half the things on there are a complete ga ga to me and the other half we didnt say.

This is what he had to say.

Many thanks for sending this troubled 45 year old lady who describes a slowly worsening 6 month history of right sided lower lumbar back pain with radiation in the right lateral thigh since lifting heavy material during work in november 2009. The pain is now constant felt as burning and throbbing and is worsened by any prolonged position such as sitting standing or walking. She cannot get comfortable but there are no neurological, dural, sinister or red flag features.

Slowly worsening, 6 month history.....THESE HAVE BEEN GOING ON SINCE 2008, WE TOLD HIM THIS. ALSO HE STATED THIS WAS STARTED AT WORK, WE NEVER SAID THIS and regarding the last paragraph could any one explain this to me.

He goes on-

The pain is worse with activity but constant throughout the day and there is no specific morning stiffness or symptoms of inflammatory arthritis.........

there is no specific morning stiffness......I HAVE TO HELP HER OUT OF BED ECT EVERY MORNING BECAUSE OF HER STIFFNESS.

no symptoms of inflammatory arthritis......... SO WHO IS LYING, THE SPECIALIST OR THE X-RAY REPORT AND MY DOCTOR.

He goes on-

An x-ray on the 19/2/10 showed minor spondylitic changes in the lumber spine with normal hips.

with normal hips........THE PAIN SHE HAS IS IN HER HIPS WHEN SHE SITS, WALKS LAYS DOWN, ALL THE TIME IT DOSNT STOP, WE TOLD HIM THIS ALSO.

he goes on-

Sandra has recently been made redundent from her job as a machine oporator due to her back pain she previously enjoyed swiming cycling.......

..........She wasnt made redundent she was layed off, she is no where near a machine, and she never went swiming or cycling.

Examination...does anyone know what this lot means please.....

Sandra attended with her husband and was extremely tearfull throught the consultation.
Lumbar spine alignment is normal but there is fear avoidance of movement.
Movements reveal extension to 20deg side flexion fingertips to lower thigh and forward flexion fingertips to knees with end range of pain for all.
Full neurology of both lower limbs is completely normal with 80deg

Sorry must go, wife bad i will finish this later.
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Date: 03.06.2010
From: paul

Subject: Re: Totally confussed

Sorry about going on about this but its the only way to explain.

Reason for the post is, has anyone had any problems such as this, one says different from the other, we are or was going to try and clain DLA but i think we would look fools, we have filled in the forms with the people at welfare rights and then the day after we got the copy of the diagnosis from the specialist which goes against every thing we have put on the form.
I am nor writing this in regards to the dla but was wondering what should we do regarding the letter of the specialist, does anyone think i should ring up and ask why he has put these things in the report or will this make him think i we are not apreciative of his help. Looking at the form its like they have wrote about the wrong person, just need some advise thats all.
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Date: 03.06.2010
From: Sally

Subject: Re: Totally confussed

hi Paul, the things I know about are Amitriptyline and inflammatory arthritis. Amitrip is used for pain, in particular for 'nerve' type pain, not just depression. In fact, I don't know anyone that uses it for depression but lots of people here take it for pain, it helps particularly at night. I take 20mg a night. It helps a lot with pain so don't think they are just saying your wife is depressed.

Inflammatory arthritis is a very different thing to osteoarthritis. It is a systemic inflammation affecting lots of joints whereas osteo is wear and tear of specific joints. Inflammatory arthritis can move around and affect different joints and people with it often have other difficulties as well. That's not to say the pain of OA can't be as severe and some of the symptoms the same but it is treated quite differently in terms of medication, apart from painkillers which are pretty standard. It seems as if your doctor was saying that she has osteo of the spine but they don't suspect she has the inflammatory type - e.g. rheumatoid. It's important to make a diagnosis if you have inflammatory arthritis as you need to start on drugs to control it very quickly. Osteo tends to be treated with painkillers and and sometimes surgery for specific joints - though I don't know about the spine. As to the stiff joints in the morning - I think they are different as in OA the stiffness wears off much quicker than with IA. I imagine that is what he was referring to. It was one of the questions they kept asking me when they were trying to diagnose me. My mother had bad osteo and was in a lot of pain most of the time. She had difficulty getting up in the morning but it wore off reasonably quickly. I have inflammatory arthritis and a little bit of osteo but normal for my age. Sometimes my joints are stiff right up until late afternoon.

Your wife could write to the consultant to ask him to explain what he wrote and ask him to correct her notes to reflect what has happened to her. She could say that she would like an amended letter sent to her. That way her version and his version will tally when she goes for DLA.

Have a look on some of the arthritis websites and it will explain more. There are some links on the home page of this site.

I hope this helps a bit. Maybe some others on here can explain things a bit better.
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Date: 03.06.2010
From: Angela

Subject: Re: Totally confussed

Hiya Paul
Was this specialist affiliated to the ESA by any chance?because if thats the case I wouldn't worry regarding the DLA. My ESA was never referred to by the DLA and I ended up going to tribunal.
It sounds like you may have the wrong report though so why not contact them and tell them everyone makes mistakes.
Sounds like you have had it upto here with having to watch your poor wife suffer. I have tried to read through this in stages to try and understand it a bit better, so here goes I will have a bash. I have RA luckily mine was diagnosed very quick.
Nuerological,doesn't that mean nerve damage?dural,no idea what that means.sinister,well that could mean lumps and bumps like tumours maybe, and red flag features could mean inflammation of the blood that is a major factor with inflammatory,arthritis. Didnt the xray report say osteo arthritis? that is very different to inflammatory arthritis. Osteo is a bone disease inflammatory I believe like RA and PA is a blood disease.
Regarding her hips well it sounds like her back is the problem which will no doubt have a knock on effect with her hips so although they look normal she is still suffering like mad by the sounds of it.
No idea again what the last paragraph of the first post means.
Hope this helps
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Date: 03.06.2010
From: KayJay

Subject: Re: Totally confussed

Paul I'm on Amitriptyline for Fibromyalgia as I used to get terrible neck pain which sparked off a Migraine with sickness. They are very good for certain types of pain [ like Sally said]. I also have Osteoarthritis of the spine and hips and Rheumatoid Arthritis which I started meds for in March as my Rheumatoid Factor [ RF ] was @80. HOWEVER a person can still have RA even with a negative RF. The Rhuematologist should go more with the symptoms rather than the blood test results. If your wife and you do not understand these letters then I would defo make an appointment with the person who wrote them to challenge their opinion.
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Date: 04.06.2010
From: Abbie

Subject: Re: Totally confussed

Hi Paul! I'm so sorry for the situation you and your dear wife are in after reading your posts I was gonna say almost the same as Sally so do take on board what she has said. With regards the Amitriptyline Sally is right when she says it's also used for pain relief and where as she takes 20mg at night, I do however take it for depression and take 200mg at night so as you can see the doses are vastly different for different conditions. Good luck with everything and I hope we are helping even If just a little bit. Go well X
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Date: 04.06.2010
From: Sally

Subject: Re: Totally confussed

Hi again Abbie, well, you are the first person I know to take it for depression lol! Does it make you feel very tired or do you get used to it? I imagine it helps with the pain as well, bearing in mind you are having a pretty rough time right now. I got somewhat depressed earlier this year and my gp told me to up the Amitrip but then I got dodgy liver results so went back down. Story of my life really :)

There you go Paul, for every thing that one person says, there is another side to the story. Arthritis seems to be a bit like that, all our stories have much in common but each is different.
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Date: 04.06.2010
From: KayJay

Subject: Re: Totally confussed

Abbie + Sally - my little sis takes it for depression as well but interestingly she used to have bad neck ache with creaking but that has not happened since she's been on the Amies. So I suppose that was an added bonus !! The only thing is she takes them in the morning - not at night?
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Date: 04.06.2010
From: Lynn B

Subject: Re: Totally confussed

Yes my hubby takes it for the pain in his shoulder, and my Daughter takes it for restless legs.tc
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Date: 05.06.2010
From: Abbie

Subject: Re: Totally confussed

@Sally, with regards to the Amitriptyline making me sleepy some nights I am knocked out within the hour but other nights say when i'm in pain or anxious it's like I've taken smarties. However it does make me struggle every morning. Where i'm so drowsy. It takes me a good 2 hours to wake up and many times I decorate myself with my morning coffee lol. I don't know how i'd core taking it in the morning though. Take care though and hope you all slept well X
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Date: 05.06.2010
From: Sally

Subject: Re: Totally confussed

Hi Abbie, how are you on this very hot morning - it's roasting here in London already. I take my Amitrip about two hours before I go to bed and am less sleepy when I get up. Couldn't take it in the morning either, wouldn't get out of the house lol!
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Date: 05.06.2010
From: Abbie

Subject: Re: Totally confussed

Hi Sally! Been dead hot and humid here today too! Yuck! I take my Amitriptyline 1hr before I go to bed coz If it knocks me out it's within the hour, probably because it's such a high dose (200mg). If I took it in the morning i'd be in a coma all day lol XXX
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Date: 06.06.2010
From: KayJay

Subject: Re: Totally confussed

Yeah I know as I said my little sis takes it in the morning ??? same here I would have to go back to bed if I did. She's been on them though for quite a few years - since her ex left her with 3 young children after 17 years of marriage !!
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Date: 07.06.2010
From: paul

Subject: Re: Totally confussed

Well Thankyou all for the replys, i cant believe the response, its over wellming and has helped very much.
Regarding the letter, ALL the explanations you have all made are right of course and i was reading it totally wrong (typical bloke i suppose).
The Amitriptyline we got and started her on 10mg this was friday and by monday they had uped it to 25mg after we rang the doctor to say nothing was happening, it isnt really easing the pain but by hek it sends her to sleep.
We sent in the claim form for dla with the letter of the specialist and the one from the doctor, and phiseo letter, just waiting for the refusal now.

Thankyou all very much again for all your kind and logical words.
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Date: 07.06.2010
From: Sally

Subject: Re: Totally confussed

Glad it has helped you Paul. Sometimes it can be difficult to see the woods for the trees, as the saying goes. I believe the Amitriptyline takes a while to work so give it some time to kick in.
Good luck with the DLA. Let us know how you get on.
xx
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Date: 08.06.2010
From: Lynn B

Subject: Re: Totally confussed

Paul dont be negative (who says you are gonna be refused) Think positive!! Good luck, please let us know how you and your loverly wife get on take care. xx
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Date: 18.06.2010
From: paul

Subject: Re: Totally confussed

Well, i dont really know whats going on now. My wife had her first appointment at phisio and the senior phisio said after her sesion that she is 100% sure its not arthritis but a injury that is causing 90% of the pain hence the word Machanical used by the specialist, if this is the case then work has got a lot to answer for, when all this really started in November (the serious pain and walking dificulties) she was working with some really heavy cloth, wife says she dosnt know how much exactly it weighed but i work at the same firm and had a sneaky look into the books and found it was a very thick cloth and my wife was packing it into 100mtr packs and then lifting them onto a pallet, this went on for 3 days. I made a quick calculation on the weight of a 100mtr pkt and it exceded the lifting threshold for a woman which is 15kg at waist hight, my wife was lifting 17.5kg all day for 3 days. I dont know wether to celabrate because it could possibly not be Arthritis or feel for her because she has lost her job because she couldnt do it.
Just filling you all in on the progress.
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Date: 18.06.2010
From: paul

Subject: Re: Totally confussed

sorry forgot to add, WHY WHY WHY has the doctor sent a report to the works saying she has arthritis, this is why she was laid off as it would be a ongoing thing.
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Date: 18.06.2010
From: Sally

Subject: Re: Totally confussed

Hi Paul, how frustrating for you! Surely she could get some compensation if it is a work related issue? Would she be eligible for constructive dismissal if she had to leave due to work related injury? Perhaps you should chat to someone about it - is she a union member or is there someone at work you can talk to?

You can get arthritis in joints that have been damaged but don't know if it would come on so quickly - I imagine it would be years rather than months but don't really know enough about that kind of arthritis.

It's good news if it isn't arthritis and I hope they can do something for her.
Sally xx
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Date: 18.06.2010
From: paul

Subject: Re: Totally confussed

Thanks Sally, my wife is back at phisio on monday and i think she is going to have a good chat with her, also got a apointment with doctor on tuesday and she is going to ask him whats going on, and she wants another appointment with the speacialist and insist on a scan and find out what the hell is going on inside her, it gets me how they can say anything without visual proof, fair-enough she has had a x-ray which show'd spondilic changes, the doctors at the hospital put the results onto the system for her doctor to see and they said in these exact words " SPONDILIC CHANGES, MILD ARTHRITIS TO SPINE AND HIPS" my wife was in so much pain it unbelievable and how on earth they can say its mild arthritis with this pain, well.
Any way she is now in extreme pain in her right hip, its there all the time and gets worse when walking, its different to the pain she was getting at first, now like a cramp pain but worse, its in both hips but hurts more on in the right one, its also locked-up (so to speak) on a few ocasions, i know one thing me and my wife are loosing paitience with it.
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Date: 18.06.2010
From: Sally

Subject: Re: Totally confussed

I'm really sorry to hear she is in so much pain but she is right to see the specialist again and insist on a scan. There might be something else going on. Also, it might help to write a letter beforehand with all her questions to the specialist. I did this recently when an issue I was concerned about was being brushed aside. He did write back pretty quickly and agreed to monitor me a bit more closely than he would have done otherwise. They are so pressed for time they can hardly have a conversation with you sometimes. I think my specialist is good but it is still frustrating trying to deal with him at times. Like other people, I get fed up with all the appointments for everything too.
Let us know how you get on.
tc
xx
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Date: 20.06.2010
From: Jill

Subject: Re: Totally confussed

Hi Paul...not been in for ages......after reading everything u ahve said, and the responses from the gang, I cant add anything that wld make any difference, but what I will say is this, if a person has spine problems, it can certainly cause Hip pain! know that for fact....I have had two right hip corrective surgery ops to my right hip nd at night both my hips(side of thigh) is agony! like a Rat gnawing on my bone!....been told my Hip surgeon, pain is from spine!...seen spine surgeon, MRI etc, seeems its tru,...im still NOT happy about that tho, cos Hip pain is terrible,and wont go away!they call it Refered pain!..... just want to say HI guys, not been on for a while, had to take a break, wish U all well, and good luck to Paul and your wife....
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Date: 22.06.2010
From: paul

Subject: Re: Totally confussed

Thanks Sally and Jill, and i think it only right now to start useing my wifes name, its Sandra

Well the phisio, after asking her is there a possibility this was due to a injury at work, wouldnt committ her self which we dont blame her but she did agree to go back to the specialist and request a scan. Sandra's doctor today was more than useless if the truth's known, all he can say is "i can only tell you what they have told me, there is nothing i can do for you only give you tablets for the pain ", So now its a case of ringing the specialist secatery and making a appointment, or maybe write and give him plenty of info, at least he will get it in a few days rather than Sandra waiting weeks to see him.
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Date: 22.06.2010
From: Sally

Subject: Re: Totally confussed

hi Paul, yes, these things can often be sorted out by phone or letter I find. Waiting for an appointment is frustrating and rushed when you do get there.
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Date: 04.08.2010
From: paul

Subject: Re: Totally confussed

Well i said i would keep you upto date and here is the latest.

Well managed to get in, really fast really,
Gave her a full examination again and said he was very concerned he rang our doctors asking if she could go for a blood test so we did this on the way hme, he rang Gisburn park private hospital and she had the scan 2 days after we so him, on a sunday (thats private for you)

Her consultant rang her on monday (this week) and told her he wanted another blood test as soon as possible, she asked why and he said your Calcium levels are way way to high and i need it to confirm they are right, he wouldnt tell her any thing else only she is going to have to have other tests before any decision is made on her illness.

If you Google high calcium and the look what google throughs up it will scare you, and thats what we did, BIG BIG MISTAKE.

I think he is not comitting himself, anyway she is getting really scared and was up all night on monday worrying about it, which i dont blame her really. So on tuesday i came home from work to be with her, i rang the consultant to see if we could see him, i told him of the state sandra was in and he told us to go and see him today at 1pm,

When we got there he was fantastic, he did say though that there is a chance of cancer but
very slight apparently, he said her calcium levels are over double what they are suppossed to be at 17.5, she is more likely to have parathyroid disease or Hyperparathyroidism which causes osteoporosis, now providing it is this is right it is tottally reversable, also with her going through the menapose she looses calcium from her bones also, so fingers crossed.
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Date: 05.08.2010
From: Sally

Subject: Re: Totally confussed

Hi Paul, sounds as if you have been through it a bit. I'm glad you've got somewhere with the private doctor. I hope he can get to the bottom of what is going on with Sandra and get her on the meds she needs. What's the next step?
tc
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Date: 06.08.2010
From: paul

Subject: Re: Totally confussed

Hi Sally, Firstly i would like to make a corection to my last post, i said calcium level at 17.5 and it should have said 14.5 TYPO.

She went for the blood tests today (friday) and she has got her appointment allready to see the consultant 6th sept, when sandra spoke to him he did say it will take a couple of week to get the results back (NHS for these) so its a case of just waiting now, this is the worst bit to be honest, its bad for me so god knows what is going through sandras mind, its getting to us both i think.

Will keep you informed.
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Date: 06.08.2010
From: Sally

Subject: Re: Totally confussed

Well I googled high calcium after reading your post and it did say it was much more likely to be hyperparathyroidism than cancer so there is a lot to be hopeful about. I'm sure the others won't mind when I say we will all be keeping our fingers crossed for you and Sandra. If you need a bit of support come on here - I'm away for a couple of weeks in August but around after the 23rd but there are lots of other peeps around. Good luck Paul. xx
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Date: 07.08.2010
From: kathryn

Subject: Re: Totally confussed

hi there

you have obviously progressed some more re medical intervention since your original response. I would just like to add quickly that i suffer similar symptoms to your wife, lower back pain (sacrum) which then affects my hips and groin and limits my walking immensly when i have a flare up. I have Psoriatic Arhtritis, (linked to having Psoriasis). I have been suffering for 9 years with this but have finally changed (demanded another hospital) and found a fantastic rheumatologist and finally had MRI scans and in process of beggining the TNF injections. I don't know if this helps or not?? Good luck to your wife! i empathise with her pain!!

Kathryn
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Date: 08.09.2010
From: Paul

Subject: Re: Totally confussed

Well hello again.

Good news, its not cancer.
When we found out it wasnt cancer she cried, he said there is nothing to worry about and the mri scans have shown a prolapsed disk, he said, your calcium levels are very high and he is going to recomend her doctor to send her to a specialist who deals with thyroid's. We asked why she is loosing control of her blader (once a week if that) and he said the nerves at the base of your back may have been damaged and this is the probible cause.
We went away and she was so relieved, 2 days later she got up in the middle of the night, this wasnt anything out of the ordinary as she always gets up because of the pain, around 4am she woke me saying she had fell, she woke up on the floor, i went down stairs with her and noticed blood on the floor, on closer inspection i noticed a big bruse under her eye and a cut on her head, i cleaned it up and she told me that she just woke up on th floor, she cant remember falling only waking up, she went into the kitchen and i herd a bang and ran in to find her on the floor, she came to witin seconds, this was about 7am, i rang the help line and they said get a taxi and take her to the hospital quickly, i said send a ambulance they said NO, i put the phone down in temper and as i did sandra colapsed again but i managed to catch her, at this point i rang a ambulance and they came and as they walked through the door she went again. She was rushed into hospital and lots of tests was done, they also spoted te high calcium and told her she has hyperthiroidism, she is currently waiting now to see this consultant as he said it needs to come out, he also said that some of the pain in her back could be osteoporosis (brittle bone) due to to much hormone being produced, she is now waiting for a dexi or dexa scan to check the bone density. Regarding the blackouts, they did a cat-scan and mri but nothing showed up and they said thats a good sign, (WHAT) she is now under ANOTHER consultant, a Neurologist she goes to see him/her on the 19th october. She is getting really bad now having really bad dizzy spells, she was in the pharmasist yesterday and she nearlly collapsed, they sat her down and calmed her, apparently the were really nive and got her a taxi home.
Ready for this........... They have knocked her of the sick, not DLA or anything like that, just sick pay, she went for a medical and we got a copy of the medical report and she scored 0 point.....zoro point, needles to say we have apealed, she also got refused DLA which we expected with all that is going on in goverment.
I will keep you all informed.

Thanks every one for listening to me ramble on.
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Date: 08.09.2010
From: Sally

Subject: Re: Totally confussed

Hi Paul, Good that it is not cancer. Not so good that they haven't got to the bottom of it yet. Must be very scary for you both. As for the benefits stuff, contact your MP and the CAB and pass it all over to them. When you appeal the DLA make sure you tell them about the falling in the night, it is cruical to getting the support you need but I would go to the CAB if I were you but make sure you don't leave anything out.

I do hope you get some treatment started for her very soon. If she gets worse, don't wait until October for an appointment, try and either get a cancellation or ring the consultant's secretary and tell them your wife is getting worse.
Keep in touch.
take care
xx
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Date: 09.09.2010
From: KayJay

Subject: Re: Totally confussed

Yes Paul what Sally says. I'm really really angry about the refusal of DLA. From the sounds of it you should also get the carers component as well or at least until she stops collapsing. Hopefully this will all be sorted out soon for you and your Wife. Fight on for your rights - we have been fighting the NHS for 4 years now trying to get them to pay for Mums Nursing care as she needs Nursing care 24/7 in a Nursing home but they [ NHS ] say that all she needs is ' social care' even though she has dementia related to shrinkage of the brain , has nil cognition abilities, double cataracts and she cannot speak !! They [ NHS + Govmnt ] are going to cut corners even more from now on .

It's a massive weight off your mind that it's not C and the MRI was normal. I know it's hard to accept but they would defo have seen something on that if it was brain related.
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Date: 17.09.2010
From: Paul

Subject: Re: Totally confussed

Hello....AGAIN

Well it doesn't rain it pour's, Sandra's appointment at the specialist regarding her high calcium/ Hyperthioroidsm came through and was yesterday, we have been waiting a while for this and lo-and-be-hold on wednesday night at exactly 9.09pm she got out of the chair went into the kitchen for a drink of water and colapsed again, i was doing what the male does at the time and clicking the remote to see what was worth watching in bed, thats how i knew the exact time if anyone was wondering, anyway i herd a bit of a bang i shouted sandra, sandra went running in and there she was lying face down in water, i moved her to the couch and rang the ambulance, they were there in minutes, she was taken to hospital and test after tests were done and questions were asked. we so 4 different doctors and all asked the same question, what happened....i think next time i will record what i say and play it back, i know there doing there job but not one wrote anything down or put it on the computore, very anoying really, 2 of them were obsesed with Vertigo 1 of them just examined her stomach and 1 was very happy tickling her feet. So 5 hours later they decided to keep her in for observations, again the calcium was high (thats a surprise) they want her to have a scan on her hart as they mentioned somthing to do with harteries, i wasnt there when this was going on, anyway she is back home again now and she has seen in the past a bone specialist (MSK), a thioroid specialist, a Neurologist and a senior Phisio, she has been admited to hospital on two ocasions and has seen so many doctors and consultants i have lost count, our own GP on numerous times and she STILL dosnt know what is wrong with her......it a joke.

Paul.........I will keep you posted.
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Date: 17.09.2010
From: Sally

Subject: Re: Totally confussed

blooming hell Paul,what a worry for you. I don't know what to suggest. Maybe a strong letter to her gp asking for a meeting to discuss everything that has happened and get a plan of action.
I'm so sorry you are going through all this.
xx
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Date: 01.10.2010
From: Paul

Subject: Re: Totally confussed

Up date.

Well Sandra still feeling prety c--p to say the least but they think it could be her artries in her hart, maybe blocked causing low blood flow, hence the dizzy spells and blackouts, they have asked for a Echocardiograph on her hart, sounds very bad i know but they assured us its not as bad as it sounds. Any way its very very possible that we could find out somthing in the next 3 week, this is Sandra's itinary for the next 3 week........

DR M D LITTLEY regarding her thyroids / high calcium on 15th Oct as a out patient.

DR. K. S. RAUVALA on 19th oct Neurologist as a out patient.

DR. SIMON MORRIS on the 28th Oct regarding her prolaped disk (now confirmed)

The Cardiology Department for a Echocardiograph regarding blocked hartries on the 2nd Nov.

Hopefully we will get some answers
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Date: 01.10.2010
From: Sally

Subject: Re: Totally confussed

Hi Paul, am glad to hear they are getting to the bottom of her fainting problem. It will be a relief for you to find out. Can't they admit her to hospital and do all the tests at once? Hope you get the answers you want soon.
xx
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Date: 02.10.2010
From: paul

Subject: Re: Totally confussed

You know Sally, i asked the very same question, they answer was a blunt NO, DIFFERENT DEPARTMENTS FOR DIFERENT THINGS, we cant make these appointments over night you have to wait your turn they said. I really do understand that they are under a lot of presure with staff shortages and so forth but if your there allready why not do them all at once. Regarding the neurologist DR K S RAUVALA'S appointment, well she is lucky to get in so early, apparently there are nly so many in the country and they move about to cover most areas, one of the doctors at hospital told us there is suposed to be one Neurologist to every 50,000 people in the country, the actual figure is 250,000 people to every Neurologist.
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Date: 03.10.2010
From: Sally

Subject: Re: Totally confussed

It's worrying isn't it? On a more positive note, at least she is getting the tests done and quite quickly from what you say. They will come around very soon and you might find out what is wrong. I feel for you and Sandra, it is horrible to be so worried about your health. I went through it with my mum. She got really fed up with going to the doctor. Good luck. Keep posting.xx
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Date: 07.11.2013
From: Paul

Subject: Re: Totally confussed

Well its been sometime since i was on here but thought it only right to come back and let you know whats happened.

Well its not Arthritis as such, in the last 2 year she has been having epileptic seizures, none epileptic episodes, severe back and pelvic pain, nd still colapsing/fainting.

She has in the last 18+ month been diagnosed with high calcium which has lead to hypercalcemia so causing the bones to be eaten away and start crumbling, this has also caused kidney stones, the medical term for this is hyperparathyroidism.
Sandra has been diagnosed with Addisons Desease and is also confirmed right temple lobe seiizures.
The addisons is a big problem at the moment because if she has a seizure or a collapse it is hospital with no esitation as she needs to get her cortisol injection or she could go into Addison Crisis, the addisons affects your imune system so if the body has any type of shock she has to double her dose of tablets that she takes to replace the hormone.
Sandra is going for surgary in the next few week to have her parathyroid removed. Sorry must go now will keep you informed.
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Date: 09.11.2013
From: Sean

Subject: Re: Totally confussed

Hi Paul

Sounds as though you have both been through a hell of a lot - I am just curious to know if anyone ever tested for or suggested celiac disease. There is a interesting article attached on the relationship between hyper parathyroid and celiac. I've done a lot of reading over the years and often wonder if doctors test for celiac (or other related) in situations like yours.

http://www.medscape.com/viewarticle/574419_2
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Date: 09.11.2013
From: Colin W

Subject: Re: Totally confussed

hi Paul

what type Addisons Desease she got , my niece developed type 1 about 30 years ago , type 2 is most common , they can control it now & , she got lupus + RA + loads of other problems & dont know if its typical for people with Addisons but just seem to keep attacking diferent parts of her

realy wish anyone with Addisons well
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Date: 10.11.2013
From: Paul

Subject: Re: Totally confussed

Hi collin.

Thanks for reply, firstly sorry to hear about uyour neice, mywife is of mixed race and her Addisons is editory / passed down on her fathers side, to be honest we hant got a clue wether its 1 or 2 type, and no one has really told us anything about it only if she is ill or has a infection to double her dose of medication, every thing we know about it we have read online, pathetic i know. As fare as we are aware its the imune system her addrenal glands. When she was diagnossed with Addisons it was a complete accident.
After a collapse years ago a doctor Littley noticed pigmentation of the skin and then tested for the desease and confirmed.
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Date: 10.11.2013
From: Paul

Subject: Re: Totally confussed

Hi Sean.

Thanks for the link but its not Celiac, her digetive is fine ect, her symptoms are none of them and its her Addisons that has caused her Parathyroid, i appreciat you replying and again, for the link, the actual diagnosis is Hypercalcemia which is very serious in sandra, the none epileptic attacks that they couldnt pin down were infact Calcemia Crisis hence the confusion, servere dizzyness and black-outs, these are very dangerous and can be fatal. What is getting me msad is they tested and confirmed high calcium 2 year ago when her black-outs were at there peak, so all in all they knew what was wron with her but insted of curing her they just gave her medication, ALL these things that my wife has started with some serious back an hip pain wich we now know was caused by to high calcium, her blackouts which started nearly 3 years ago seems to be caused by hypercalcemia, unfortunatly the blackouts turnned into Epileptic seizures,
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Date: 10.11.2013
From: Colin W

Subject: Re: Totally confussed

hi paul , dont know alot about addisons myself , my neice developed it after having BCG tuberculosis vaccine , years ago people with tuberculosis would die afterwards because it causes Addisons , think the difference in type 1 & 2 is the adrenal glands is distroyed in type 1 & they are totaly dependent on steriods

my neice was very lucky that a doctor picked it up as soon as she went into hospital , that was 1983/84 so cant see why they cant keep your wifes Addisons under control but you need good GP & good doctors
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Date: 11.11.2013
From: Paul

Subject: Re: Totally confussed

Well i am asuming that my wife has type 1 then, a couple of years ago i am sure somone mentioned hyperadrenalism but i cant remember any paperwork with a diagnosis of this.
All i can say is ALL of these deseases that sandra has could have been avoided, after sandra has had her parathyroid opp i will be seaking legal advice because i think they way all of this has been handled is wrong, me and my wife have worked all our lives up until she started with her condition, it got so bad with her collapsing and then eppilepsy that i had no choice but to become a full time carer. NHS waste of time. Sorry but i am so angry.
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