[julsie]

If I didn't have this board and my husband I think i may have gone mad.Saw the immunologist this morning.I can say he was rather unpleasant and that would be an understatement and yes,he reduced me to tears
I went in and he said I had fibromyalgia,good..a diagnosis at least.Not a surprise though .He said that he couldn't believe that none of the specialists I had seen before hadn't mentioned it..well,you'd better believe itand it would have saved me a lot of time,money and trouble if they had.He said that fibro is often found in people with low self esteem,yes..I'll give him that...who are perfectionists and like thngs 'just so'.That is so much not me.He then said I had caused this myselfbecause I pushed myself when I was younger as I was a swimmer and an athlete,at this point I wanted to deck him and worse...that I would cause it in my children by projection:tears::screamin::grrr::wall: He must be related to my G.P who said I was looking for a cause for my symptoms through my children when my youngest had been ill.He said that I wouldn't have had glandular fever at 13 it would have been the fibro starting,I have to point out I was not an olympic athlete or anything.So I said ,so I won't ever be fit enough for work?to which he answered 'no'.So in this small consultation,I not only have a self-inflicted illness,I will also make my children ill in some subconscious way and that is the end of my career:huh::?There is no magic cure,there was no talk about treatment apart from anti depressants and cognitive behavioural therapy.He said it was normal to have a raised rheumatoid factor at 37,or even an ANA at my grand age,it means nothing apparently.
I showed him photos of my skin to which he said was urticaria,strange,the consultant at the lupus clinic did not rule out s- acute cutaneous lupus.He said a biopsy was pointless.I showed him your skin photo Claire,from the lupus newsletter,as mine is like yours,but he said yours would scar but mine didn't therefore it wasn't s- acute cutaneous Lupus?
All in all a very depressing visit.I did stand up for my self though.He thought his being blunt was a a good quality and it is in a way,but I said there are ways of telling people and he had been plain horrible.His manner was patronising,he didn't want to know my past history'now tell me your present symptoms with no embellishments'was one of the first things he said,and lots of I'm not going to even go down that road with you if I asked him a question,hhmmph,sorry about the long post...is anyone still there?:blush:
Julsie
Best of all,he said I was a twit for seeing other consultants to try to find out what was wrong with mea*******

 

[cad]

Hi Julsie,

:there:​

What an absolute night mare for you, I am so sorry this happened.
Did this doctor or your other doctors do the pressure test which help diagnose foibromyalgia, or did he just look at and decide whats wrong without even doing examinations?
He actually sounds like a bit of jumped up jobsworth without an ounce of humanity in him.
Fibromyalgia is not something that you bring on yourself, i don't have it an i'm not an expert but form what i've readf i do know that much and that it can be triggerd by a virus or stress or trauma.
Its a very real illness.

Not much more that i can say except is there any chance of getting a second opinion, have you seen a rheumatologist?

I really hope you manage to pull yourself up, just remeber this dr. was an insenstitive idiot, don't let him hurt you and make you end u doubting yourself and feeling bad.xxx

Good Luck

Cassie

 

[julsie]

thanks Cassie,unfortunately the rheumatologist I saw was trained by him:sad:.The rheumatologist was actually very nice and thought something autoimmune was going on..come to think of it...maybe that's why he wanted me to see another immunologist not this guy

 

[cad]

Hi Julsie,
so can you not go back to your rheumatologist and expain whats happened or have you been discharged now.

Cassie

 

[Marshmellow]

Just wanted to send you my sympathy-some medics leave **** of a lot to be desired-we shouldn't have to cope with idiots like that on top of our illness

Hugs
Rachel

 

[Katharine]

Hi there,

I'm so sorry you had such a purely awful appointment

I'm a little confused as to why your rheumy sent you to see someone else if he thought something auto-immune was going on.... anyway, I would get back to him and tell him exactly what happened.

I can't say any more. I did once have an appointment like that. I was so tired from not having slept that I didn't react but if I have made sure that I have kept very clear from that doctor since (she was what they call a "sports" doctor here, so I never need see her again).

Katharine

 

[BigSis]

Julsie:hissy:
Sounds like this man had you judged and diagnosed before he had even met you.
Too say that your illness is brought about by your own doing is to say the least unhelpful

I don't know what to advise I'm sorry........just sending hugs and sympathy

 

[LolaLola]

Dear Julsie,
I have Fibro as well as Lupus and other things. Fibro occurs as a secondary quite often to some illnesses. When Dr. D'Cruz confirmed the Fibro diagnosis he said nothing about me "causing it". Sounds like you have seen a patronising bully.
Please, please think about Dr. D'Cruz if there is any way you can get there. I would still be struggling locally.It is awful having to find the money but sometimes it is the only way.
I am sure your Husband also found it painful and frustrating to sit in on this nonsense.
Hugs to you both,
X Lola

 

[Clare.T]

Phew !
I still really haven't calmed down enough after reading this but I want you to know that I am so sorry you had yet another rotten encounter the worst of them all perhaps.

I showed him your skin photo Claire,from the lupus newsletter,as mine is like yours,but he said yours would scar but mine didn't therefore it wasn't subacute cutaneous Lupus?

Oh lordy lordy, such absolute crap. Subacute cutaneous does not scar - that is one of the major differences between this form of cutaneous lupus and discoid. There is no discoid at all on my face.That photo mainly shows residual redness and rather inflamed areas that are still simmering now and then.

I do think a note to the rheumy is in order - what he said to you and his opinion of fibro is way out of order in all respects.

Hugs
Clare

 

[julsie]

Clare,
I am still really upset about it and I'm sorry for mispelling your name!I can't imagine anything worse than feeling ill for so long and being told you've 'caused it'.When I said I had petechiae,he said'no big words please'sarcy so and so.The worst thing is my 13 son always has a mouthful of ulcers and his hands go blue and now I wonder if I'm causing it somehow?I know that's irrational,but when a consultant,professor too,says you are ,you really doubt your mental health and I thought I was quite normal:wacko:He is referring me to cognitive behavioural therapy...I'm sure that will cure itand I never knew immunologists were trained psychologists too !
Julsie

 

[BigSis]

No No No Jules.........don't burden yourself with guilt because of what this eejit said.

When I read your first post I was feeling a bit wrecked (bad head day...........can't think straight) Today I feel better but just as mad Julsie:hugbetter:This man is spouting his opinion........you know from what Clare has experienced, that what he says is not fact.
After 30 years of nursing I can assure you that some docs are worth their weight in gold, some do a 'good enough' job and some talk rubbish out of their nethermost orifice.
Lola is right I think you need to see someone with real experience of these diseases.
Don't dismiss the CBT, it can help you deal with this stuff(including bad docs)

'No big words' indeed........I'm surprised he didn't pat your shoulder and tell you not to worry your pretty little head about it :hissy::hissy:
AAAAAAAAAAAGH,

 

[julsie]

Thank you all for your kind replies and Big sis,here!here!I'm right with you on that!I'm not going to rule out CBT,I know it does help a lot of people.I hope I never run into that consultant again!
Julsie

 

[halfpintfl]

Hi Julsie, I Truly, truly wish that you were right here now, I would hug you until you laughed as loud as I am.
First, lets just say I have seen age 50 a great while back, and last december our PCP dropped our insurance company and never told any of his patients. Now, I have had my share of condecending pats on the head and thought I was past that. But we had to find a new PC before we ran out of our meds!!!!! We interviewed four dr.'s, one as bad as the other. Finally we said yes to the last one that seemed toat least know how to read and write. I asked if he knew anything about lupus, he said some, I asked if he would mind working with my dermy and my Rheumy, he said no.
He booked me an appt. Went to the appt, he put his hand on his hip and said, first, he would be the only dr. that I wouldsee, did I understand? I said no, I needed my other dr.'s. I said you don't know anything about lupus do you? He wouldn't answer. I said , just tell me one thing you know about it- nothing. I stood up, put my finger in his face and called him a liar. He had told me he knew something that he did not, and was forbidding me to see any other dr. I said write the scripts for the meds that I need and I'll get out of here. He wrote them and said there you go Missy!! to which I said, my name is not missy, it is mrs*****.Now I don't recommend everyone to do thid, but like you julsie,there is a limit. It worked out that we ended up with a wonderful and caring group od dr.'s Stand your ground Julsie. :wink2::lol:​

 

[karen.w.]

Dear julsie :there:

I am so shocked & angry for you :hissy: I agree with everyone else it's outrageous the way you were treated! how are you feeling now?
I'm sorry about your fibro diagnosis too.

big hugs to you julsie :hugbetter:
love karen x

 

[julsie]

My brother has just told me that he was diagnosed with an immunodeficiency in Australia,but he doesn't know which one he was just that he would need immunoglobulin if he became worse!this makes me even more angry that this immunologist didn't give me the time of day,I have been trying for over twenty years to find out what is wrong.My brother is much worse than me and a bit older but he doesn't want to hear suggestions of Lupus or such like which makes things tricky.Last week he had a mouthful of ulcers,severe fatigue,is in constant immense pain with his joints and has now started getting skin lesions.He said he has had strange tingly sensations on his head and sinus problems.I am so angry with the immunologist that I saw,that I am going to put in a formal complaint.Hope others have more luck,
julsie

 

[wifajax]

Julsie -

All I can say is...wow. How did you not punch the man in the nose? How does one muster the gall to tell a patient they have caused their own illness by being a perfectionist???? And to infer you would make your children ill as well!

I've had my share of trouble with specialists, but this one takes the prize. Keep your head up, and keep searching. You will find the right doctor and get the answers you need.

Terri

 

[julsie]

Terri:lol:
This was probably the closest I have ever come to punching a doctor but I didn't think it would help my cause much when he was already pulling the'she's a nutter' card.Hmmphh!
julsie

 

[julsie]

I have just received a copy of this consultants letter to my G.P.The last part goes like this,'This was a blunt direct almost confrontational consultation but hopefully she will benefit from grasping the message and realising that she does have a disabling condition(he's talking about the fibromyalgia diagnosis)but it is induced by stress and there is no magic bullet',......I really dislike this consultant A*******!!!
Julsie

 

[sjink]

Hi Julsie

I have just read through this thread and was horrified. Well you are not alone in disliking this @[email protected]* idiot ... talk about patronising. I see he didn't say it was him that was being blunt, direct and confrontational. Tricksy as well it seems making it look as if you were the reason for the confrontation rather than him. Grrrrrrrrr

Please don't take it to heart. I had a rheumy once who thought I was imagining my CNS symptoms and virtually told me to "get out more and pull yourself together". He was convinced my lupus symptoms were a drug induced flare and that I was imagining them because in his book they should have cleared up a month before I saw him! If I had taken what he said seriously I might not be here now.

Keep your chin up. It may be worth going into the GP if you have a good relationship with him/her and discussing how hurt you are.

Love
Sara
x

 

[Nutty]

Hi Julsie,

I'm not sure how your medical system goes or what the chain of command is, but there has to be someone you can file a complaint with I hope. I am appalled at his behaviour and treatment of you.

We had a nightmare of a visit to the ER recently that left me a mess because of her treatment to me. As soon as I get better, we will be writing to the College of Pyhysicians. I don't know if you have something similar?

It might be worth it. I guess you have to consider what you want out of it. In our case, we feel that no one should be at her mercy in an ER situation. If someone wants to go to her private practice, then so be it. But, no one should have to take abuse from a doctor.

Hope things out better for you soon.

Nutty