OMG...cant believe the dr said that!!!

[Kerry72]

went to my rheumy apt on Friday. didn't see my Rheumatologist but some other dr. I mentioned that I wasn't eating normal sized meals and was losing weight, said I was ok with the weight lose at the mo as I still feel I've a stone to lose. I also then said I was concerned in case I started losing to much weight and ended up under weight....so she says...THERES NO CHANCE OF THAT HAPPENING!!!!! I was stunned...cheeky bloody mare!!!!

[Hidden]

I wasn't sure whether to laugh or cry. As you say cheeky 'mare'. More importantly were they able to you?

[Kerry72]

i'm laughing but still I could have punched her!!!

[living-the-dream-ssc-ray]

mmmm 'compassionate manner' training required !

How about you take in some information leaflets on scleroderma and raynauds available from the raynauds and scleroderma association (raynauds.org.uk) ? as this 'Dr' could clearly use some help on her level of understanding ! I am assuming you have scleroderma, Kerry72 ? If so, all of the major oragans including the stomach are affected. Even if you have dont have scleroderma but have Raynauds the stomach can also be affected due to the vasoconstriction of the vessels during a spasm.

Even if you are not due another appointment soon, I would still get those information leaflets distributed to that department. And have some for your next appointment to hand over in person, being the helpful patient dont alllow yourself to feel angry as your diagnosis symptoms will be having a party with the extra stress hormones circulating around your body ! x

[redtommy07]

well take heart, as im sure you look fantastic no matter what your weight is, but the so called dr ! will still be stupid and insensitive :o) xx

[zenabb]

Yes funny, but did she/ he pay attention to what you were saying? Why have you lost your appetite?

[kjane]

I would have said "excuse me but that was totally uncalled for and you should apologize".

I have Gastroparesis which is a disease that is connected to my Scleroderma. I started having problems with eating about 2 years ago. In November 2011 they did some testing on my swallowing and I had to eat a scrambled egg with a tracer in it and then I laid on a flat table while they watched the egg try to digest in my stomach. It too 2 1/2 times longer to digest and then not completely. I spent the next year with up and down nausea and vomiting and weight loss. Foods I had always loved became taboo because of the side effects. In November 2012 eating had become a real problem and I had dropped almost 30 pounds in 3 months. I was put in the hospital on December 12th and had a PEG Tube placed in my stomach, this was to take tube feedings of cans of nutrition to control the weight loss. The PEG Tube did not work on me after 2 tries, so the surgeon placed a J-Tube into my small bowl to do the tube feeding and a G-Tube into my stomach so if I did eat - which I am allowed to do in small quantities - I could empty the backed up food if it was not digesting properly or if I had not eaten much let out the gastric juices that also cause nausea. I have now lost a total of 45 pounds and weigh about 168 lbs. The doctors want me to try and maintain that weight so that if I have further issues, I still have some weight that I can lose.

Gastroparesis is not an easy diagnosis and MD's do miss it. I am not saying this is what you have and that you need a feeding tube but watch your weight carefully and keep a good food diary for at least a month, if possible, of everything you eat and drink every day. I met with the dietician at my GI doctors office several times to help me meet my daily intake requirements, they suggested 6-7 small meals a day at first. I would eat yogurt, mashed potatoes w/gravy, meat that was easy to digest, nothing fried as that would cause a very bad flare up, applesauce, ice cream, and blended fruit smoothies. But it just got to the point where I was suffering too much with the nausea and weight loss. The placing of the tubes is not hard and the care is very minimal once you get used to it. My husband comes upstairs every night at 6:00pm to set up my pump and then we start the tube feeding. I just go to bed as normal and it feeds over 16 hours for me. This was my personal preference as I did not want to be hooked up all day and not go any where. The tube just tucks into my panties and no one knows it is there. When we eat out I usually order from the kids menu as I no longer have a huge appetite. Again, not knowing your symptoms, I just wanted to share with you how my issues started and where I am now. The tube feedings can be done on a longer or shorter session depending on how you feel after the first few feedings. My hubby does most of the cooking now (which is rather nice) so he makes what he wants for dinner and I just have a small portion and then some pudding or something else before 8:00pm. If you have gastric reflux where your food comes back up in your throat be sure to let your GI know. Also, my GI MD recommends to not eat or drink anything for at 2 hours before bedtime which lessens the chance of Reflux during the night.

Again, I hope I have not scared you. I have lived with Scleroderma and Raynaud's for 21 years now and have become my own advocate, because no one else will do it for us. Just keep your food diary and then show the doctor or Dietician what you have been eating and why are you still losing weight. They may be able to offer you a medication to take to control symptoms for several years but unfortunately you can't get it in the USA. I think you have started the ball rolling by asking the right questions. Just continue to ask until you get a good answer that you understand and can tolerate. .

I still think the MD needs to apologize, I agree that was simply a rude thing to say. We have enough up and down days, we do not need out doctors making fun of us.

[living-the-dream-ssc-ray in reply to kjane]

thanks for sharing your experience -wow you are one brave lady ! I can relate to all of your experience up to the feeding tube bit. Luckily for me, my GI complications settled before having to have a tube, although my diet was very limited. I started using a juicer in december as well as cutting out carbs and have been feeling so much better with more energy and not as severe constant pain. Have you tried a supergreen juice with spirilina and wheatgrass ? since I started a daily one of these my lethargy moments have been fewer ! I am on year 16 of the scleroderma raynauds experience so a big thank you to you for helping the medics with their understanding of this illness to help us newer ones not have to go through some of the hit and miss treatments ! x

[Kerry72]

Thanks for all your comments, I'm not entirely sure if the appointment helped or not. Was told I need to do exercise 3-4 times a week and that's there is no chance of becoming underweight ( I'm only 11 stone so I'm not huge...target weight is 10 stone) the hydroxychloroquine is working well for me, but no real answer to the appetite question. She thinks it could be the naproxen irritated my stomach which I've now stopped. That was a few weeks ago I stopped it, I think I'll give it another month or so and if my food intake remains the same ill speak to my lovely drs at the surgery again. Kjane I think I was stunned to say anything, my husband came with me and heard it too!! I know about pegs ect as part of my job. Living- the-dream initially from my first consultant he thought it was scleroderma but my new consultant is saying mixed connective tissues disease. Personally I think I'm showing more signs of scleroderma than anything else. Have a good day everyone

[BarbJ in reply to Kerry72]

Hi Kerry72, before I was even officially diagnosed the first rheumatologist I saw told me that i should keep my weight up - presumably because if you get a flare of your disease (or, obviously, gastric problems) your weight will drop and you need to have enough to lose without it affecting your health any more than it is affected by the disease (if that makes sense). Actually for a while now I've noticed that my digestive system has slowed and my appetite has lessened, I just feel full a lot of the time. I'm already on 3 domperidone per day but it's not helping a lot now. Although I probably should exercise more as that undoubtedly helps, but I can't always summon up the strength to do much after a day's work. My reflux has worsened too but I'm very glad I don't have kjane's problems - you obivously cope very well with it kjane. Am not sure that I would! Interestingly, the gastroenterologist I saw a couple of years ago advised me to leave 4 hours between eating and lying down - it definitely helps, or rather it did, lately I'm waking up wth reflux too often for my liking. Anyway, we keep going don't we, and thank heavens for this site I say. It's so good to hear others' experiences (though no one should be put through the experience of having a rheumy say to them what the 'silly mare' said to you Kerry72!!). Goodnight all. Warm wishes. BarbJ

[living-the-dream-ssc-ray]

ew hydroxyxhloroquine !! that stuff made me feel sooooooo sick although I didnt vomit on it very frequently. I felt as though I had eaten the bottome of a rabbit's hutch, not that I have ever experienced that, but this is how I used to describe the hydroxychloroquin experience to my friends ! It definitely suppressed my appetite also ! I was only on it for a few months as it didnt seem to be working effectively although I was having the side effects ! I was then started on Cellcept. I am glad that you are responding to it. and as for your weight - these are powerful drugs so dont be worrying about how much you weigh whilst you are trying to get your symptoms under control ! Have you had a look at the information leaflets available from the Association ? They may help you with your self diagnosis

[nettie545]

My Rheumatologist was also quite rude. No emotion on her face either and no sense of humour! She was lucky I was in a good mood that day, so I just made a joke and didn't let her phase me, but I wouldn't go back to her. I chose another Hospital to go to a new Reumy.

I think it's very important to be pro-active yourself in your diagnosis and treatment. Sometimes these Drs. become a little dispassionate, after seeing so many patients a day and need a little waking up I think. I think, on the NHS especially, one needs to fight for what you feel you need. After all, it's your body and they are really learning from you what these diseases are doing to you. They are not living it, you are. I went on to the Vasculitis.co.uk site and there, you will find help about Raynaud's and Scleredoma as well. I got lots of info and took it all to my GP and my son's GP, as he has Fybromyalgia and there is a link there somewhere I think, not sure. I hope you get some answers for your problems. Just keep going at them!!

[overnighthearingloss in reply to nettie545]

I feel it is important to point out that many doctors that people may see privately also practice within the NHS, and or received their training within the NHS.

To automatically assume that to see a doctor privately is a step up is a bit of a fallacy.

If however, the same doctors wear different masks when treating patients within the different systems, that probably says more about their own deep seated attitudes and not necessarily their doctoring ability. People may believe that all doctors are following a vocation. Sometimes some doctors dont portray that ideal.