Major Confusion and all his generals

[cath]

:tantrum: : :tantrum: :tantrum:

:angry: :( :unsure: :afraid: :cry: :erm:

As you can see I am not happy today. I am confused, angry, depressed and every other kind of #*#^#'d off there can be.

My rheumy has totally confused me. Last week he said I definately had lupus and he wanted to start treating me ASAP (hence the close appointments).

Today he says he doesn't know what I have, but he doesn't think he is the right specialist for me to be under :hissy:

He is sure it is something major, and thinks probably a mast cell disease (systemic mastocytosis), but he isn't the one to diagnose that. I have an appointment with an allergist/immunologist in one month. :nono:

I don't know what to think :( . I just want something DONE :angry: :tantrum:
Of course the right treatment has to be decided based on the right diagnosis, but I'm really mad that he could be so adamant and positive one week, and totally change his tune the next. :tantrum: :sneeze:

I'm thinking the beat treatment might be intimacy with a fast train... :angry:

Sorry for being in such a bad mood..................

PS Anyone have a crystal ball ? Is it going to be OK in the end?

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[Lily]

((((((((((((Cath))))))))))) :hugbetter:

Not sure what to say to you :wacko: but what a roller coaster ride this is turning out to be :hugbetter:

I had to go and look this up, never heard of it before ;) What is he basing his possible diagnosis on? As far as I could tell patients with this have urticarial pigmentosa and certain blood abnormalities if its systemic? Did you have any of those?

I'm gobsmacked but sending hugs, hang in there and yes it will be alright in the end once you cut through the confusion and get off the roller coaster ((((((Cath)))))
You sound pretty atypical like I was at first until it all started fitting into place and it took an Immunologist to sort me out :P

love
Lily

[zara]

:huh: Hopefully things go better with the immunologist. :sorry:

Zara

[flowergarden]

Cath, could you call your rheumy and ask why he thinks what he does?

Do you suppose some docs. don't understand how confusing, intimidating, etc, they can be? :blink:

Good luck. :luck:

[cath]

Hi all, thanks for the replys!

It is comforting o know your there and on my side :love:

Yes Lily, it should be diagnosed by blood tests (tryptase levels) and a bone marrow biopsy or organ biopsy (looking at mast cell abnormalities). At least that should be relatively cut and dried to deturmine - it isn't dependant on symptoms.
The incidence is somewhere between 1:1000 and 1:8000.

I think the reason he is considering it is my urticarial rash which involves swelling and itchy eyes, tongue, throat and lungs if not suppressed, along with the fact that I've had anaphlaxis in the past. OK, fair point and I will go to the appointment.

The other evidence Against SLE is that my ANA and ENA were negative (now neg 3/5, pos 2/5 so ? trend towards negative here. If the incidence of lupus is 1:1000, and the incidence of ANA neg Lupus is 5:100, then the general population of ANA neg lupus is 1:40000 ie RARE, so I think this is a fairly valid argument.

Also this time (first time), the electrophoresis was normal.

Otherwise things weren't much changed. The 24 hr urine was slightly worse but not much, the C4, platelets and wcc continue to be boarderline.

The symptoms and triggers of both can be very simmilar, so either diagnosis answers a lot of questions.

The things I have that aren't typical of mastocytosis are:
Proteinuria
Malar rash
Petechiae
Livedo reticularis
Raynauds
Flares that are flu like with fever (SM also has ?risies but typically anaphylactic shock)
Joint swelling
Mouth and nose ulcers

Actually I think this list is quite a lot of unanswered questions, but I will just have to wait and see...........

Either this rheumy is a genius, or he is too quich to open his mouth with unfounded comments.

I think if the allergist doesnt have anything concrete it is time to get nasty and demand a bone scan, serial 24hr urines (again today it is on the rise - I think we're just missing collecting on the bad days), serial bloods including the autoimmune panel, skin biopsies and ? a renal biopsy. I want come concerete answers.

Am I being unreasonable?

Sorry about the long post, and thanks for bothering to read it all...

:flowers:

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[Lily]

No I dont think you're being unreasonable at all! Has he looked at some kind of systemic vasculitis etc? Just thinking about those fevers, the livedo etc. when I mention that.

I too think you have a LOT of unanswered questions with those other symptoms and too many things pointing towards a connective tissue disease.

((((((((Cath)))))))) as little comfort as it is I think you are going to have to play the game and see the Immuno to either confirm this or knock it off the list - the mastocytosis.

And you're right sometimes they do say or throw some things into the mix, kind of thinking out loud when they perhaps would have been best keeping their thoughts to themselves. I know I came away upset a few times for that reason. We had the lets just wait and see what the tests show, then we the NO you dont have lupus, then we had well yes it could be, until he'd exhausted every conceivable logical explanation. Of course by that time my bloods had given him enough evidence and he must have been leaning that way all along because he tested me every two months for about a year.

Sending hugs for your fortitude and strength, I think many of us can identify just how :wacko: :wacko: this can make us feel.

Oh and have you ever seen a dermatologist with the rashes, re biopsy etc? It's one avenue to consider too. I did it in desperation at one stage and it was another opinion, he didnt end up doing the biopsy, but he really thought I had a CTD and he spoke to my doc. stating this so it all helped.

love
Lily

[cath]

Hi and thanks for yor reply Lily! :love:

You give good advice :flowers:

In answer to your questions, yes I have seen a dermatologist in England both with the initial onset of the itching and also with the petechial rash. The first they said was idiopathic urticaria. I had the full allergy patch testing done. They couldn't read a thing because my whole back was a mass of hives (where the patches were, but also where the tape was and actually pretty much all over) - their interpretation of that was that I wasn't allergic to anything in particular but to pressure and friction. They did wonder aloud anout vasculitis (I also had 40+ bruises on my legs), but thought it unlikely.
The petechial rash they didn't think much of - they didn't pass any kind of diagnosis on it and declined to biopsy.

Do you think it is possible to go to a dermy and ask them straight out to do the Lupus band test and to biopsy my face, or is that too direct.

In answer to your previous question ( about the urticarial pigmentosa), no I don't have and never have had this rash.

Yes you are right I will have to go to the appointment and see what comes of it. If she wants to repeat patch test me though I am planning to refuse unless she admits me for it. It was absolute **** :tantrum: and I'm not doing it again for nothing.

Thanks for reading :wave:

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[Lily]

Hi Cath,

I've only ever had the patch test for allergies done twice in my life - the first time I was very very young and apparently they told my mother to go away and do the best she could I reacted to everything :P :rolleyes: They did determine my worst allergens which there were about 4, so I avoided them as best I could.

I then had it done around 16 yrs ago after the birth of my daughter when I was getting some lung problems that they at first thought were asthma but in reality it was some repeated bouts of pleuritis and some other stuff creeping in > enter Lupus I say in retrospect. Guess what? I reacted to nothing, not a thing :lol: I expressed amazement at this to the lung guy who got the results and he said it means nothing, not a thing - that this can happen with this sort of testing. Interestingly enough he checked my kidneys and checked me for oedema at the time too ...........hmmmmmm. I'd had some resurfacing kidney problems then too.

Ok, on to the Dermy question, yes why not! The only trouble is that a skin biopsy when taken from lesional skin ...... the results will only be as good as which things they are checking it for and the skills of the Dermatopathologist reading them - so you would need to get that right. And on non-lesional skin if its positive for the Lupus band then thats great, but..............it can still be negative but you can have Lupus :wacko: If it was positive though wouldnt that be absolutely worth it! Some here have gone that route. Providing you can get a dermy to go along with this that is, if you got a positive result then it negates everything else doesnt it?

Good luck with the Immuno though, it wont hurt to get another set of eyes on your case and it will be interesting to see exactly what they think of it - you may get a pleasant surprise.

love and hugs,

Lily

[cath]

:flowers: :flowers: :flowers: Thanks :flowers: :flowers: :flowers:

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