London bridge appointment

[Theodora23]

Hi all ,

I have been up and down and had terrible days.

Had recently bloods taken for systemic mastocytosis...

I have finally decided and made an appointment at London Bridge to see a specialist, it won't be Dr Cruz as he is overly busy , it will be Dr Kaul this Friday. I'm scared , I have 2 a4 pages of symptoms and are just getting worse. Now all my muscle are twitching, it is horrible it feels like I've got fireworks within them, still losing weight, skin has gone mad...you name it.

Has anyone been seen by this Dr ? Any feedback will be very appreciated. Thank you ! 👏🏼

[Buckley123]

Hi I have muscle twitching all over I have done for nearly a year.

What did your bloods say ?

I see dr kaul he’s nice but not as good for me as doctor de Cruz who I saw yesterday who think I could have mctd hang on in there xx

[Theodora23 in reply to Buckley123]

Im going down hill , still waiting for the results. Most of my bloods dont say much and the drs I see are like dont know what to do with you ...been given steroids as and when I need to take them . I know dr Cruz is the best but I'm losing the plot right now ....is horrible

[Buckley123 in reply to Theodora23]

What’s your symptoms try not to worry easier said then done I know x

[Buckley123 in reply to Theodora23]

I’ve had a quick look at your recent posts and we are very similar I have swelling under my left eye/cheekbone

I get itch rash like little red spots on my skin and the muscle twitching mainly when I Lay still like a ping pong ball under my skin

I don’t have a actual diagnosis yet but I hope to very soon xxx

[Theodora23 in reply to Buckley123]

Thank you for your reply , I hope to get some answers soon .

[Buckley123]

What’s you’re symptoms xx

[Plumstead15]

I’ve heard him speak at south london Lupus uk patient event. He came across as knowledgeable and personable. He is well liked by many of his patients from what I’ve gleaned. Good luck.

[KayHimm]

Just noticed they were considering mastocytosis with you. Were you sent to an immunologist? Did they do additional testing for mast cell activation disorder?

[Mimma]

Hi Theodora23, Yes, I saw Dr ****** about two months ago. Very nice manner and seemed thorough. He felt I had been incorrectly diagnosed with Lupus and diagnosed polymyalgia rheumatica. Took me off Hydroxy and put me on prednisolone. Felt better immediately.

Just disappointed that he encouraged me to have further blood tests ( I had taken all blood tests to date) and then didn't bother to follow up and explain the results. I had to chase the secretary who was very helpful and she contacted him on my behalf. I received a forwarded email to say 'bloods as expected'. Didn't think that was worth the 475 GBP's I spent on having the tests!

[riannabri in reply to Mimma]

Oh dear - Now I am concerned as I have been transferred over to him

[Theodora23 in reply to riannabri]

Dont be , it might be that my experience wasnt too good, I dont know . Like yourself I'm seeing dr Cruz so I can only hope for a better understanding .

I'm seeing lots of other Dr's atm under NHS , my bloods are normal but symptoms are fitting the whole spectrum and are just getting worse....I'm only trying to get to see someone that can listen to my pain and have a bit more time with me and guide me through.

Dr Kaul concluded that I have hypermobiliy...might be this as well.

[riannabri in reply to Theodora23]

I was seeing Lanham and Prof Hughes and they were amazing but Lanham has retired so transferred over to Kaul as they said he was the perfect fit for me - Here's hoping - I am already dignosed with the big 3 + Hashimoto's but cant take anything due to intense drug reactions so hoping Kaul will help x

[Theodora23 in reply to riannabri]

Im sure he will, I am into a rollercoaster atm and I am on treatment, Friday I had dermatology app and left with another batch of treatment plus EpiPen because of my severe allergic reactions..

Dr ****** seemed really nice , but because of my weight loss of 30 kgs and still going , he said anorexia nervousa therefore I really disagree with it because I work in medical field myself and I know this cannot be thrown out like that and also I'm pretty sure I'm not suffering from it. I took my bloods results with me he looked at them and dismissed lupus because they were negative although I had 2 a4 pages and pictures of symptoms. I felt terrible as my husband accompanied me and he looked perplexed when anorexia was mentioned...I went off doubting myself as well....that was my experience.

[riannabri in reply to Theodora23]

Oh Dear not good - For me way back in 2012 I had all the signs of Lupus and ******* said it was all in my head he sent me to Neurologist friend of his at privately and diagnosed with a Psycological condition and was told that I needed to come in for a 3 month stay to stop me thinking I was ill, never run one blood test - I was bedbound could not walk was having seizures and was so so ill - I finally had a GP said you look like you had Lupus and much more was sent to the London Lupus centre, was positive for everything and was diagnosed with Lupus, Sjrogens, Hughes and Hashimoto's - so obviously my faith in doctors is very bad

[Theodora23 in reply to riannabri]

Tell me about it , weight loss I'm under BMI , I am sick all the time , protein and blood in urine , skin or I should say photosensitivity, pr bleeding , skin rashes ,joints pain , sometimes I'm in so much pain I cannot lift myself up and now for the past 2- 3 months my muscles have gone bad I have continuous twitching and uncontrolled movements...this are just a few symptoms. I'm under a few dr here but I only had bloods at the beginning and came negative and now as a whole the nephrologist concluded that I have systemic mastocytosis. My new symptoms are worrying because I cannot walk or go up the stairs , is way too painful and and I get SOB...

I do hope everything goes well for you , and hopefully will help you .please keep us posted. X

[KayHimm in reply to Theodora23]

Are you getting a referral for the mastocytosis?

You have really been through a lot. I do remember there was a possibility of mast cell disease with you. Don’t they think is why you have had the severe weight loss?

Hope you get treatment soon.

K

[Mimma in reply to riannabri]

Dr Kaul is very good so don’t worry. Good luck

[riannabri in reply to Mimma]

Thank you x

[riannabri]

I was under Dr Lanham & Prof Hughes and have advised to go over to Dr Kaul with my first appointment in 2 weeks, I was transfered over to him as I had a very bad experience with ******** on the NHS years ago, I am told you will be in amazing hands under Dr Kaul did you see his Youtube, so impressive youtube.com/watch?v=uurahS5...(Not working as expected?)

I personally think that a large part of this is personalities and ensuring YOU stay in control and work well with your doctor

The very best of luck xx

[riannabri]

My appointment with Dr Kaul was an utter disaster

[Wr4ef in reply to riannabri]

Sorry I know this was 5 years ago but could you tell me why It was a disaster I've just booked a consultation with him :/