How many times did you hear this befo... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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How many times did you hear this before your diagnosis?

Sophiebun11 profile image

Time for a new Dr.

18 Replies

Freaking all the time 😡

Sophiebun11 profile image
Sophiebun11 in reply to Chimama

Very annoying isn't it.

Then when you know you wish you didn't LOL

Sad but true. Found this exchange funny.

Diagnosis

That's funny. I had one idiot Dr. tell me when I was 42 and having Congestive Heart Failure that I was having PMS!!

I told him he was wrong and went to the ER. He was reamed out by the administration and his attending MD. He was a resident who thought he knew it all. I guessed I was having CHF since I'm a paramedic.

If we didn't need prescriptions a lot of Dr. appt. would be cancelled!!!!

We have to hang in there and be out own advocates with help from our friends here.

Hi Sophiebu11

Funny but oh so true, mine range from ‘It’s your

perceptions of your symptoms that is your problem’ to

‘When is this lady going to get the message that there is nothing wrong with her!’

The last delightful comment I read when the Consultant had obviously forgotten that I would receive a copy of his report to my GP!

They were wrong on both occasions.

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Too bad they can't read what we think:

"What a rude Dr., she hasn't a clue what's wrong with me"

"How arrogant, she wouldn't know an autoimmune disease from a fractured toe"

"Next time I'll have my fingers turn red/purple/white/blue like a Raynaud's chameleon to impress her".

It's very frustrating to say the least. And there aren't many Rheumys and it takes forever to get in to see one so they know they can get away with it. I reported one to the patient advocate at the hospital she yelled at me. She was so upset that I showed her 20 years of diagnosis and results that contradicted her 15 minute exam and she wasn't used to patient's standing up for themselves. I told her she had no right to yell at me, I got up and walked out half way through the appt.

The next Rheumy at that hospital told me she yells at everyone even at the other Drs. That is unacceptable. No excuse for it. Drs. are people, they need to get into research if they can't deal with human interaction!!!!

Best wishes to you and your "perceptions" LOL (teasing, of course)

Hi Sophiebun 🤗

Here in the USA doctors rarely admit they don’t know something.

My experience most of the time was you’re crazy it’s in your head you’re imagining your symptoms attention seeking.

It took 6 decades 2 DNA tests and a conference among top world specialists to finally diagnose my extremely rare IEM and my Neurologist proved all of those naysayers that they were WRONG!!!!!

I’d much rather they admit they’re puzzled by my case than accuse me of all the aforementioned leaving me in tears and hopeless which exacerbated everything.

At least in your case you have the hope of perusing a diagnosis.

I gave up so many times.

Best wishes for the answers you seek sweetie.

Love and prayers.

EJ 🤗♥️🥰🙏🕊❤️‍🩹🤝🌿🌸🦋

A diagnosis means nothing when there is no cure and the treatment is often worse than the disease. I have so many diagnoses you wouldn't believe it!! LOL

I'm sorry it took you so long to get validated. It just shouldn't be that way!!!

Hi, Sophiebun11,

Didn’t get my diagnosis yesterday, the appointment didn’t pan out as I had expected, left me feeling totally confused. My cappillaroscopy test is obviously showing some areas of concern as the radiologist came back to me just as I was about to leave the hospital and said she was asking for a second opinion.

I was given two options, firstly to be referred back to my GP, who has declared he knows nothing about SSc and is not at all supportive. The second was a further appointment in a years time, with the Scleroderma Unit.

I refused the first and chose the latter.

I fully realise that it can take a very long time to get a diagnosis, in fact another lady at the clinic had been

attending for four years without a diagnosis. Poor lady she was in quite a bad way. My symptoms have escalated

so much in the last three months I am so scared as to

how much I will go downhill in the next year.

Sorry to moan as others are suffering a lot more but I feel in a very black mood today and crying all the time but it will pass, hopefully. 😢 I hope your telephone appointment is successful for you and Henry doesn’t decide to join in! 🥴🐱🐾

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

You made me laugh when you mentioned Henry joining in my phone Dr. appt. Henry always thinks I'm speaking to him when I'm on the phone so does so a few meows here and there. He's quite the conversationalist.

Never feel like you have to apologize for expressing frustration or about how poorly you feel. The only good thing to be said for worsening symptoms is that it helps paint an easier picture for the Dr. to see exactly what is wrong with you.

Keep the Rheumatology Sclero appt. in a year, but always follow up with your PC to treat symptoms as they come up. Some can be severe and life-threatening as with lung and kidney issues associated with Sclero.

I hope you get some help. It's a shame you aren't being treated there are meds. I'm on Pred. and I may be started on CellCept soon.

Best wishes for better days ahead or at least finding a diagnosis!

Cat on phone
Bkart profile image
Bkart in reply to Sophiebun11

Hi Sophiebun11,

Yes I’ve just got to ‘go with the flow’, I’m just so confused and worried though at the moment. I was so hoping some treatment could be started but without the diagnosis that’s not going to happen unfortunately. I was champing at the bit waiting six months for this appointment, another year seems like a lifetime, but nothing I can do but be patient.

We have an advert here on tv where a woman pretends to freeze her zoom call as she is ashamed of her old kitchen but her cat walks in front of the camera !! So funny and I just thought of Henry doing the same thing. My two little dachshunds have not left my side, they can really sense how upset I am. It always amazes me how intuitive and loving animals can be.🐾

I am on Amlodipine and losartan ( may be a different name in the US) for existing heart problems which is I think keeping my Raynauds under control, it used to be so bad. Also PPI’s for the swallowing and reflux. It’s now the skin tightening and muscle pain and weakness especially in my face, legs and arms, which is my biggest problem, but no treatment given.

I am going to sit and eat chocolate all day!!! 🥴😬😂

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

See you don't even need a Dr. You know the secret cure to everything "Chocolate"!!!!

I slather my face and everywhere in Vaseline hourly. I can't use other lotions as I get migraines from fragrances.

I was just given potassium prescription as mine is low on last lab test last week. It's supposed to help with weakness, cramping, spasms and muscle fatigue. You could try supplements OTC of potassium if you don't need prescription yet.

Chocolate

Omg nobody knew what I had in 3 years even with dark lines on my legs and body. I got fed up with consultants saying I've never seen anything like that before. Can you imagine how I felt I googled it and told them.

Sophiebun11 profile image
Sophiebun11 in reply to Lelly13

Wow, that's a shame. I hope they felt badly.

Best wishes. I'm glad you were your own advocate.

Ah thanks Sophiebun11 you know how to cheer a personup, would that I could get a choccy prescription, under our NHS you can get lots of other things on prescription, why not Chocolate, 😂☺️. I had to drink a potassium solution several times a day in hospital, it was disgusting

hope yours is in tablet form. 🥴😢

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Yes, mine is a huge pill. 1 inch long and wide as my pinkie finger. Twice a day. My Neph. told me not to curse at him. I told him I'd only do it in the privacy of my own home LOL

Reply to Sophiebun11

Just googled Chocolate, it’s on the list for high in Potassium! I shall be at my doctors first thing Monday

morning for my Choccy prescription! Lol 😂

Seriously though as I have been low in potassium before I think it might be a good idea to ask for a blood test, thank you for the reminder, anything that might help, hope it does for you as well. Strong fragrances can start my headaches off too, there used to be a perfume called

Tweed, many many years ago. That was a real no no for me.

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

I take medicinal chocolate for my migraines, the caffeine helps. My Neuro Dr. told me. I don't drink coffee or that would work as well.

Obsession and Red are the worst perfumes for me and Axe colognes are horrible. Cheap designer knock off sprays are just as bad. I can't deal with GAIN laundry detergent either, people who use that leave a trail of the smell behind them as they walk down aisle or the sidewalk. It must be a great bug killer LOL

I'm hoping the potassium pills will help my energy, muscle spasms, and other issues. Please do get your level checked and Vit. D too.

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