Update to my last post

[Murderfan58]

Saw my GP yesterday about my swelling legs. Referring me to my cardiologist and thinks I need an echocardiogram and further treatment . She is referring me for a bone density scan because of my falls and my mom had osteoporosis. Told me I was overweight told her I know but had lost 7st and still trying to lose more but when my legs swell my weight goes up 2-4 lbs overnight . Asked what I ate so told her and explained I can't cook fresh everyday because I never have two days the same due to my HPX but always cook from scratch . Asked how much salt I had told her teaspoon my stew but that did 6 dinners and teaspoon in my homemade lentil and veg soup also for 6 lunches . And cooked my porridge in coconut milk. Told me to stop having coconut milk as high in sugar. So when I got home canceled what I had ordered from Sainsbury's and ordered some unsweetened almond milk and oat milk to see which I like.

Asked me to take my BP twice of a morning and twice of an evening for a week and take in the reading . She wrote it down which was fine but she put 4 x7 = 28 readings . Didn't read that until I got home otherwise I would have pointed out I learnt my times table a long time ago. She has been with the practice since I joined it but the first time seeing her . She did listen to me and asked questions about my HPX and read my neurologists letters . Just lacked the bedside manner. The other 4 GPs are blunt which I like and liked it in her but didn't like being treated like an idiot. I know she probably didn't mean it .

Plus she was a bit sarcastic about my sit fit class . I did point out it's not an easy option and we did stand up exercises holding on to the chair plus walking exercises. We use ankle weights ,straight resistance bands and circular ones. Plus I exercise daily at home even if I go out do my 7 wake up exercises and 300 rotations on my static pedals. If I don't go out do a full 30 mins of different exercises a mix of what we do in class.

Thank you to everyone who replied to my question about my blood test results.

[Happyrosie]

I had a look at your earlier posts too. Maybe your doc needs a bit of training on bedside manner …. Anyway.

my mother had swollen legs and was investigated several times without anyone finding out why. Incidentally she lived until nearly 92.

Let’s suppose that the fluid on your legs weighs ten pounds. If you take this off your actual weight, are you still overweight? Cooking from scratch is indeed the way forward, as long as your portion control is good and the food isn’t full of fat, salt and sugar! There’s some good guidance on the NHS EatWell Plate, look it up. Though their information is out of date as far as “low fat foods” is concerned. If you eat “low fat foods” like low fat yoghurt, you are probably eating things that you wouldn’t find in your kitchen, so these arent a good idea. Hope this makes sense?

[Murderfan58 in reply to Happyrosie]

Thank you for your reply. I weigh and measured everything I eat and drink and count calories . And have done since September 2017. I make my own low fat yogurt using Easyo yogurt powder. My stewed fruit I top my yogurt with is sweetened with granulated Hermasetates . I don't eat meat and only eat chicken breast,Quorn mince ,chicken pieces and sausages. Only put teaspoon of salt into my stew which is for 6 dinners and my soup is made with red lentils and lots of veg teaspoon of salt for 6 lunches . I like instant hot chocolate but have low cal version . I don't drink coffee as it gives me palpation's .

I am a trained chef and was brought up coking from scratch. Only cereal I have is porridge oats. Don't buy cake or biscuits as I make my own but only once a fortnight and work out the calories . I found today I like unsweetened oak milk and unsweetened almond milk. I grow my own tomatoes,kale and chard . If I make a lasagne with 50g mature cheddar 30g of flour and 200ml to 300ml skimmed milk the all in one method . Don't need any fat as there is enough in the cheddar to make a lovely sauce don't need salt either as enough in cheese.

My jams and marmalade are made with less sugar as I don't like them sweet just boil them longer . Use fruit from scratch same with my chutneys . I give most away to family and friends but I like making them . Been doing that since my dad taught me but I make them my way.

Thank you very much for caring . My hereditary Hyperekplexia meant I was a very skinny child it wasn't until my diagnosis that I realised why my parents didn't stop me over eating and put weight on . When I wanted to diet when I was 13 my parents told me it was puppy fat and would go. Having my diagnosis I know why I was skinny as HPX babies and young children have problems taking milk some have to have feeding tubes and find food hard to swallow. I can choke on my own salvia as my food pipe goes in spasm can't think how to spell the correct word for it. I can't have crispy food as I choke on it and get mouth blood blisters . My hands tremble all the time so I eat with a spoon and fork. When I eat out always have to have my food cut up for me in the kitchen and usually eat vegetarian have to be careful what's in the food as I can't some foods. Had problems with my potassium levels so have been on low potassium diet for 15 years.

Family and friends know what I can and can't eat. I was very obese but my husband loved me but lost 7st since 2017 as I realised it's a marathon not a sprint and decades of being so heavy my skin will never tighten up nor will I loose all the fat . But I was a size 32 now a 16 . Exercise daily and go to sit fit class every week. I don't drive so have to go by bus ,train or taxi . My walking is very strange because of my HPX and fall daily.

Even my feet slimmed down .

[Qualipop in reply to Murderfan58]

ALL I can say to you is a huge well done. To lose 7 stone is amazing. My son is on that marathon and losing weight slowly but consistently. It takes huge persistence but it's the only way. Your GP should never be sarcastic. I think I would speak to her about her manner. I had one the same. I liked her brusqueness but she didn't realise how sarcastic she came across. When someone is doing as well as you it deserves praise not sarcasm.

[Murderfan58 in reply to Qualipop]

Thank you. It's the first time in 5 years since I joined the practice that I have seen her. But she did listen to me and referring me to my cardiologist and for a bone density scan . So I won't bother saying anything.

I have had worse . In 1988 was told by 3 different hospital doctors I was a fake, attention seeking and mentally ill. And a nurse shouted at me it's only post natal depression.

Never had such good healthcare as I get here.

Thank you for caring 😊

[Qualipop in reply to Murderfan58]

I was told I was a liar when I said I had two herniated discs in my neck; just because the MRI scan was done on NHS but at a private clinic and the result hadn't been recorded. Some people just shouldn't be in medicine. It used to be very common to dismiss women as being neurotic anxiety ridden and faking everything. I sincerely hope those days are gone. In 1992 when I had a nerve trapped in my spine and rolling on the floor in agony I was t old I was just hysterical. Luckily the neurosurgeon I saw privately admitted me immediately.

[CarolingTeacher in reply to Qualipop]

Amen! I’m so sorry that happened to you! They can do a lot of damage to us women!

[Murderfan58 in reply to Qualipop]

So glad you got believed in the end. Those things were said to me in 1988. But I have friends that had to wait 5 years and only got their child diagnosed as autistic last year when he was 16 . They knew something was wrong from when he was a toddler. .

We know when something is wrong with our bodies . Thankfully moving to the north west gave me better healthcare and getting the treatment I need. 😊

[Qualipop in reply to Murderfan58]

Oh I Knew exactly what was wrong but it remained misdiagnosed for 10 years. A condition called Maigne syndrome or T12 syndrome, very often misdiagnosed as sciatica because the pain is in a similar place. I was put on ever increasing doses of oxycodone and not treated. By the time I found a pain consultant who diagnosed it within 3 minutes, the nerve was too badly damaged to ever heal and I ended up in a wheelchair. Even 5 years earlier he could have operated, released the nerve and I would have slowly recovered.

[Murderfan58 in reply to Qualipop]

Thanks awful . Sorry you have been through so much . Hopefully those that misdiagnosed you have learnt their lesson but I doubt it. I let my old neurologist and the neurologist I saw at St George's London now I had my diagnosis and to get people's blood genetically tested if they didn't know what was wrong with them. Hopefully they took notice.

[Qualipop in reply to Murderfan58]

My GP certainly learned from it. I'd given him a printout of the symptoms and it was obvious he'd never heard of it and thought I 'd simply googled something. YOu can't expect a G P to know every condition but he apologised profusely for not sending me to someone much earlier and has now learned all ab out the condition.

[Murderfan58 in reply to Qualipop]

That's a good result . The senior GP at my surgery teaches and asked if he could discuss my HPX with them and he asked extra questions to what he had asked in the past . This was last year . Patients are the best teaches as we know whatever we have and how it has effected our lives . I can't remember a waking minute without pain and if I was suddenly pain free then I would know I was dieing 😁

[Murderfan58 in reply to Qualipop]

Sorry forgot to say well done to your son . I am happy if I only loose quarter pound a week. Found exercising helps a lot . My brother has lost 8st and swims for hour 5 days a week at 6.30am and walks 10,000 steps a day. He has permanent AF and 2 stents in his heart . He's had a mini stroke and a bled on the brain after a piece of metal fell off the lorry he was driving he has a stent in his brain .

The main thing if you have a bad day food wish each day is a new start. A friend renamed dieting eating less for life . 😊

[Qualipop in reply to Murderfan58]

My son doesn't exercise enough. He works from home in IT but he has just fixed up his bike so he can ride into work when they have F 2 F meetings.

[Murderfan58 in reply to Qualipop]

I have static pedals at home and do 300 rotations a day on it . I couldn't ride a bike as my balance is rubbish. Once he starts he will find he likes it especially as the weight comes off🚴

[Qualipop in reply to Murderfan58]

I have those but can't use them. Son used to go out on his bike for a whole day and loved it.

[devonian186]

Why Almond milk and oat milk? Most brands have all sorts of additives and sweeteners. Presumably you are vegan or allergic to Dairy?

As regards "bedside manner" I often think I would like my GP to be another Basil Fawlty and tell me the facts. You can imagine the conversation with such a GP if some patient was very overweight!

You have done so well on losing weight yourself. It is VERY difficult to do. Hope you get your bone density scan and that the reference to the cardiologist happens soon.

[Murderfan58 in reply to devonian186]

I am not vegan or vegetarian but like my porridge made with milk other than skimmed milk. It's a texture thing. I do have it made with skimmed milk when I haven't got an alternative but it's not the same. My HPX means I have problems with foods . But I didn't get my diagnosis until 2022 and joined the Hyperekplexia society Facebook group and found I wasn't weird or alone with this rare hereditary neurological condition. Others are like me .

[Happyrosie in reply to devonian186]

I had a Quick Look at just one brand of almond milk and it contains what I regard as “things I wouldn’t have in my kitchen”.

[Murderfan58 in reply to Happyrosie]

I have brought Alpro and Sainsbury's to see when brand I prefer. But I like how my porridge tasted and the texture so will use . I use skimmed milk for tea ,cheese sauce and any baking that needs milk. Thank you for looking for me .

[Heartfairy]

Hello Murderfan58, wow how strong are you! Coping with everything from childhood and go on to lose 7 stones all on your own!! Plus you make your own jams, soups and stews in bulk for the week, grow your own veg! I think you’re amazing and you sound like a very brave lady. Huge well done to you 😃. Do continue with your sit fit and to go from a size 32 to 16 you deserve huge congratulations - it’s not easy so well done you. I feel sometimes the medics are very quick to try and find something to blame rather than say “well yes this hasn’t helped but….. look how far you’ve come” and just continue to give a bit of encouragement. I really hope you some great results as you’re being tested for various things but I hope you get to the bottom of things and get treated asap. You sound like you’re doing great to me - very encouraging! I might grow some veg….. and cook in bulk - you’ve inspired me. Let us know how you get on with those tests. Good luck 🤞 ❤️🧚🏼‍♀️ xx

[Murderfan58 in reply to Heartfairy]

Thank for your lovely reply. My late husband said I had a black turns out I have a green one. But not for house plants only have to look at one and it dies. I keep my soup in a large plastic box with lid in the fridge. Because of using the red lentils it thickens so add drop of water when I reheat it. Plus I portion my dinners into oven proof dishes if I am low on my cals for that day add extra veg or pasta ,rice or bulgar wheat depending how many cals I am down. I add more water . To reheat it. You have to make the world to suit you not the other way round. My husband was brilliant when the limbs jerks and pain got worse he just said we alter our way of life to suit you and be a normal family. He adapted our house to make things easier for me. But I be was a hands on mom only thing I could do was go out by myself. Our children where 4 and 6 months when I got worse so our GP had a wheelchair made for me. But my husband had wheelchair rage. Anyone cut in front of us he hit them as they saw us coming and crossed at the last minute. He rigged up a harness for our son to make sure when my limbs jerked he didn't fall off my lap. .

When the children where older only used the wheelchair occasionally. And they where used to having a disabled mom.

You have to live your life to the full I promised my husband that . As he died from cancer aged 47. It was 20 years in February.. None of us know how long we have got and I live my life for him . But the grief can still be overwhelming. Grief like love never dies and making a new present and future is hard . Plus the grief gets worse as the years go but you just learn to cope ..😊

[Spanl5]

Bless you. xx

[CarolingTeacher]

You are AMAZING! Each of your sequential posts inspired me to admire you even more! You go girl! You’ve gotten me to face…and begin to work on some of my own issues after reading how hard you have worked on your health concerns and your successes. Wow! I’m so sorry about the passing of your wonderful hubby. He sounds like he was a loving, incredible man—you were incredibly blessed! Thank you for being a marvelous blessing to us!💕