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KittyBoo

Hello - struggling to get a diagnosis

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KittyBoo

Hello everybody.

Sorry about the long post.

I'm new here and think you all sound lovely.

My problem is that I am still going to the Drs. regularly with one thing or another.

Two years ago I was really ill and was eventually diagnosed with hyperparathyroidisim (too much calcium)

and I had one of my parathyroids removed.

Since the operation, I have not felt right.

I have chronic pains in my legs and joints - they feel tingly and numb sometimes.(treated as arthritis and given tablets and physio)

Some days I can hardly walk because my legs feel like jelly and my right leg trembles.

My memory is shocking and has become a bit of a family joke (in a nice sort of way).

My sons have mentioned that my words get mixed up and sometimes I can't find the word I need.

I have sufferred from agrophobia and panic attacks and have seriously thought about suicide when I was at my worse. ( diagnosed as depression - more tablets and CBT)

I can't remember certain events that my family talk about eg places we went on holiday, days out and I know this is getting worse.

Within the last 6 months I started to suffer dizzy spells and balance problems (treated as labyrinthitus - given tablets).

I went to Drs 6 weeks later as it was still ocurring and she held her finger up and asked me to follow it left to right and then up and down.

I did the wallking things and nearly fell over.

She said she thought it was an ear infection and nothing wrong with my brain. (more tablets)

This is getting worse and in the last 2 weeks, I have fallen over 3 times.

The last time was awful as I fell onto a small fence and bruised both of my thighs and hurt my back.

I also fell over when I was pegging the washing out - i reached up to the line and overbalanced when I looked up.

To be honest I feel really desparate because I don't know what is happening to me.

I feel as though the Dr thinks I'm a hypochondriac and the last time I went she said that I should get a job there as I was there as much as she was.

Now I am reluctant to go back even though I feel dreadful and just keep getting a repear prescription.

Don't know what it is but suspect it might be something that links all of these symptoms.

Not sure how to take this forward.

Thanks for taking the time to read this.

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jeni

Hi Kitty Boo,

 

Hello and Welcome from me.

 

I am so sorry to hear of how you are feeling.

 

Please do not apologise for writing a long post, you really seem as if you have been having a really rough time of it.

 

I am afraid that I do not know to much about your previous condition regarding your Thyroid, but know that there are people on this forum which may have more of an idea than me.

 

As far as being told that you should have a job there because you are there so often, you should just remind them that it is people like us that pay there wages!! Please do not let them make you feel that you are a hypochondriac, you know what you are suffering is real and your family know also.

Have you ever taken someone with you when you see your GP? Maybe you could think along those lines and let them tell your GP of how they think you are from there perceptive, terrible I know to have to have someone vouch for your symptoms, but sometimes it helps to have someone else to speak for you when your confidence is ebbing.

 

Has anyone at your surgery ever suggested a second opinion to you? could you see another Dr at your surgery? maybe that would be a start for you to see another GP? and tell them of how you are really feeling.

 

I know that you will get some help from the other's on this forum, but please feel free to ask or join in on any topic.

 

Take Care.

 

Love Jeni xx

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Hezza

Hi KittyBoo and :cheers: from me too,

 

Hmmm I think on a sarcastic day I might have been inclined to tell the doctor that I'd rather not see so much of her so could she please find out what is wrong!!

 

You are entitled to request a referral to a specialist from your GP for further investigation. I'm not a medical expert and your symptoms could be caused by any number of things so I'm not sure who the referral should be to. In the case of MS or another neurological issue it would be a Neurologist but your symptoms could also be caused by something that isn't Neurological. I think if it was me I'd just say something along the lines of "I'm worried, I think something's going on, how do we find out what?".

 

As Jeni has said is there another GP in the practice that you could see if you're not comfortable with your current one? Or perhaps you could write a letter explaining how worried you are about all the recurring issues and stating that you would like further investigations carried out?

 

:censored:


Life is short. Eat dessert first. Jacques Torres

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KittyBoo

Thankyou for replying.

I will go and see one of the other Drs.

The problem is I am not really sure how to raise the issue.

I have been that many times and been treated for individual symptoms

but it's never been suggested that they look into it any further.

Do you think she might be working towards eliminating things so she can then decide

if it might be something that links them all together?

Is this similiar to the experience that you had before you were diagnosed?

No wonder everyone says they feel like a hypochondriac.

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Tania B

KittyBoo,

 

Seeing a different GP should give you the opportunity to present all your symptoms together. It will be helpful to go prepared with a list of the symptoms that you have and have had together with their duration. Include a reference of the drugs you've taken too and how you've responded to them. If your prescription drugs are not helping, it is not helpful to continue them.

 

A list is a helpful memory jogger that you can refer to. You can be more confident that you won't forget anything and be fobbed of with a repeat prescription. I know that this sounds like hard work but I believe you can do it in small manageable stages when you feel at your least worse.

 

When you read past posts on this forum, you will realise that you are not alone as others have had very similar experiences. You are not a hypochondriac and only you know you own body. It sounds as though you just need someone to listen. The hard part is putting your case over to a doctor, in a factual way, as a doctor is not interested in how you feel emotionally.

 

We can and will support you here as much as we are able. So, welcome! :hugs2:

 

 

Tania x

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KittyBoo

There are 2 other Drs at our surgery.

One is a young registrar who everyone says is lovely and the

other is a miserable toad with no bedside manner.

However, in his favour, he was the one who got a diagnosis for my thyroid.

Might go to the registrar.

Will be making an appointment tomorrow so I will let you know how I get on.

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jeni

Hi Kitty Boo,

 

Well Done You :hugs2: for making the decision to make another apointment at your surgery.

Yes go with the GP that you will feel more comfortable in seeing.

 

If you can try and make a list of your symptoms and how long you have had them.

 

Please let us know how you get on.

 

Take Care.

 

Love Jeni xx

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KittyBoo

Do you think it best to go back to the time after I had my operation?

Since then everything has gone down hill.

I want to make sure I get the best from this appointment.

Would it be best for me to say how it's been recently eg vertigo, falling over and memory trouble?

Or should I just go back further to when the symptoms became noticeable?

Thanks for helping me work this out.

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Christina

Hi Kitty

 

I would think that going back to when it all started and including the more recent symptoms would cover all bases.

 

Chris x :hugs2:


Not waiting for the storm to pass, but learning to dance in the rain ....

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miss daisy

hi kitty boo

 

nice to meet you and a warm welcome from me.

 

i am in limoland as well feeling something is not quite right but not knowing what it is,after getting good support and advice from here on how to address the issues with the gp,i took a list to the gp with me from when i thought my symptoms first started, putting the most troublesome at the top of it, as frustrating as it may be and worrysome, sometimes it can take time for a gp to put things together.

 

take care. x

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KittyBoo

Thanks for replying so soon.

Miss Daisy - have you been going to the Drs with lots of separate things over a long period

of time?

Did your Dr ever suggest that they might all be linked, or have they just been treat individually?

I am now taking 16 tablets a day and these have all been diagnosed on each visit and for something different.

The Dr I am planning to visit is a registrar.

Does that mean he might not be at the surgery to stay.

I can't face explaining everything to him and then him moving on.

I have never seen him before and don't want to do his head in by

trying to give him all the details of what's wrong with me in one appointment.

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ptlike

Hi Kittyboo

 

Hi and wellcome :hugs2: I am sorry but I can't offer any better help than what people have already wriiten

 

Best wishes

 

Peter

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miss daisy

hi kitty boo

 

yes i have previous to this year been going to docs with lots of different things, and have been given meds for all different things including depression and anxiety,howeve i never thought they could all be linked until this year, when i had a really bad time over a few of months, by which time i was dx with fibromylgia and then cfs after more visits. it wasn't until i took my list really that another gp to the one i usually see said she would refer me to a specialist.

 

i was feeling awful again over the past few weeks so found myself going back again, and it was another gp, it is hard having to explain each time, if you don't feel you can list and discuss them all in the one visit, i would start with the most troublesome ones, or any that you may feel that are connected.

 

thinking of you and i hope you manage to get an appointment. please do let us know how you get on.

 

 

 

 

take care. x

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Dianni

Hi Kitty Boo and :cry: to the forum

 

I agree entirely with the others that a list of symptoms is invaluable. If you think it's too much to get in on one appointmetn, maybe you could book a double appt.

 

There's nothing wrong with asking straight out whether there is any link to all the stuff you've been going through. I don't think your doctors are trying to fob you off and you have been given treatment for each episode, so they know something is wrong. Please don't think you are a hypochondriac. You've had a rough time since your operation and you know you are ill. It is possible (and to be fair, more than likely) that you have just been damn unlucky and had quite seperate, unrelated illnesses. However, there is always the possibility there is a link and again, I'd be very tempted to suggest this and ask if there are any investigations to explore this possibility.

 

There's loads of support and advice here and everyone is friendly and willing to offer support, so I hope you will hang around with us and let us know how you get on.

 

As the others have said, feel free to jump in with any posts or start a new topic, and don' apologise for long posts. We have a 'rule' here that no question is silly and there's no such thing as asking too many, so don't be shy!

 

Looking forward to seeing you around the boards and getting to know you better. :hugs2:

 

Hugs

Di

xxx

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KittyBoo

Thankyou all very much for your suggestions and for making me feel so welcome.

Just an update.

I rang the surgery and the registrar was on holiday and my usual Dr was on call.

The receptionist offerred me an appointment with the Nurse Practioner and I decided to see her.

She was lovely and listened to my story (I have seen her in the past for something or other) and

she said I was to have a full blood count done and another in depth one for my thyroid.

Then I was to make an appointment to see my usual Dr next week.

I told her I didn't fancy seeing her again as I felt I was wasting her time but she said exactly what you have said on here.

Without us patients they wouldn't have a job.

So that's it up to now.

Next appointment next Tuesday so until then I will have a good look round this forum.

Thanks again.

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jeni

Hi Kitty,

 

I am so pleased to hear that you managed to get to see someone who you could really talk to.

 

At least now the blood tests can be done and hopefully you will soon get the results of them.

 

If you do have to see your usual Doctor dont forget to take your list with you, at least that way you will be prepared as to what you want to say.

 

Good For You Kitty, you are now one step closer to maybe getting an answer to your health problems.

 

Please let us know how it goes.

 

Take Care.

 

Love Jeni xx

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miss daisy

hi kitty boo

 

i am so glad your appointment went well, its a good idea to start with a fresh blood test, i have had so many this year i feel like a pin cushion!!! lol

 

you should feel very proud of yourself for going today, i know its not easy.

 

 

hope to see you around the forum.

 

take care x

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lisalisa

Hi there

 

Are they testing your calcium levels, if they have gone too low that can cause all the symptoms your having.

 

Because you had to have a parathyroid removed you are at risk of going hypoparathyroid ( not enough blood calcium produced ) The op you had is the most common cause of hypoparathyroidism.

 

Blood calcium plays a very important part in healthy nerves.

 

With your history and operation im suprised the Doctor didnt mention it to you ( mind you i take that back, im not suprised!! )

 

Let us know what happens.

 

Lisa xx

 

PS. Big welcome from me:hearts_circle:

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Tania B

Kitty,

 

I'm pleased that the advice that you've been offered here has helped. So good luck with your next appointment!

 

Tania x

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KittyBoo
Kitty,

 

I'm pleased that the advice that you've been offered here has helped. So good luck with your next appointment!

 

Tania x

I realised I hadn't been on here for a while and thought I would let you know how I am.

Went to see the Dr and she was really nice.

Blood tests showed a slight infection and she said that could be down to the arthritis.

She has referred me to the neurologist and I'm just waiting for the appointment now.

I asked her why a neurologist and she said they would be able to rule out things like spinal cysts, MS etc.

She upped my Gabapentin to 900gms 3 times a day and gave me Tizanadine for the night.

She toyed with the idea of giving me Pregablin (sp) but said to carry on with the Gabapentin and see how they go.

If no ease to the symptoms then she'll prescribe them.

I've got more tablets in my house than Boots.

I have been really bad this last week and could hardly walk or stand up.

There are some new pains I get down the top of my foot.

It feels like when I was younger and used to wear high heels that killed the top of your feet.

The soles feel as though they are burning and the pains in my legs ar awful.

They wake me up at night, and the next day I'm shattered.

Back to the Drs again I think.

I find this forum really helpful and everyone is so supportive and kind.

Thankyou all for your replies.

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rosie-b

Another message of support. :hearts_circle: This doctor sounds really nice. It is good she has referred you to a neurologist. Listing it all out is a double whammy!! It keeps us informed and helps you compose your list to take for discussion.

 

:rofl: Rosie

 

I realised I hadn't been on here for a while and thought I would let you know how I am.

Went to see the Dr and she was really nice.

Blood tests showed a slight infection and she said that could be down to the arthritis.

She has referred me to the neurologist and I'm just waiting for the appointment now.

I asked her why a neurologist and she said they would be able to rule out things like spinal cysts, MS etc.

She upped my Gabapentin to 900gms 3 times a day and gave me Tizanadine for the night.

She toyed with the idea of giving me Pregablin (sp) but said to carry on with the Gabapentin and see how they go.

If no ease to the symptoms then she'll prescribe them.

I've got more tablets in my house than Boots.

I have been really bad this last week and could hardly walk or stand up.

There are some new pains I get down the top of my foot.

It feels like when I was younger and used to wear high heels that killed the top of your feet.

The soles feel as though they are burning and the pains in my legs ar awful.

They wake me up at night, and the next day I'm shattered.

Back to the Drs again I think.

I find this forum really helpful and everyone is so supportive and kind.

Thankyou all for your replies.


Rosie B

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Dianni

Hi Kitty

 

Lovely to hear from you again hunni :hearts_circle:

 

I hope you don't have long to wait for for you neuro appt and you finally get some answers.

 

Hugs

Di

xxx

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KittyBoo

Well, since my last post I have been back to Drs and she has taken me off Gabapentin and put meon Tegredol and still keeping on the Tizanadine at night.

She sent me for an MRI scan on my back and apparently it shows a bulging disc and arthritis.

Been to the neurologist and that was weird to say the least.

He was very loud and spoke really fast and seemed to be just really dismissive.

He did certain tests such as looking up, down.

Put a buzzy thing on my leg to see if I could feel it and had me marching on the spot with my eyes shut and arms outstretched.

He looked at my MRI scan on my back and said"there's not much wrong there"

He said he thought that my balance problems were linked to my ear and said he wanted me to have an MRI scan on my brain just to make sure I'd got one.

He suggested that I might have a prolapse when I told him I leaked slightly and that my poor memory was probably fatigue because I have to keep getting up in the night for a wee..

He wanted to know why my Dr had discontinued with the Gabapentin and rolled his eyes at the medication I am now on.

To be honest I went back to the car and cried because I felt so humiliated and don't feel that I can carry on with this.

I don't know who to turn to or what to do next.

Am I supposed to go back to my Dr and start all over again with the aches and pains list.

Really fed up now.

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Hezza

:hugs2: Kitty

It's horrible waiting and wondering and needing answers but feeling fobbed off and not taken seriously.

The Neuro may have used a flippant (and in my opinion rude) way of saying that he wanted you to have a brain MRI but he wouldn't suggest it if he didn't want to check for something, or to rule something out. So there is a next step rather than completely starting from scratch.

 

I'd suggest going back to your GP and discussing the appointment with them and asking what will happen next. If you feel up to it tell the GP exactly how you felt or take a print out of your post and show them. If you would rather see a different neuro you can ask for that.

 

Take care honey :hearts_circle:


Life is short. Eat dessert first. Jacques Torres

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KittyBoo

Thanks Hezza.

I should really not have been surprised at the appointment - I've read enough posts on here to know It's not just me.

Think I will have to go to my Drs and see what it all means.

Does the Neurologist make the appointment for the MRI scan and will I see him again or only if there is something on the scan?

I don't suppose my symptoms will all miraculously disappear just cos the scan is clear.

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