Re: Question - Granuloma Annulara? Sorry, I am info collecting!

[Guest guest]

OMG! Another bogus diagnosis, by yet another dickhead Dr!!!!

The description sounded like it a bit, though no mention of the SLE

connection like the Dr mentioned, however when I took a look at the

piccies, it is nothing like the thing that I had.

So here is a description:

on my knuckle, when in a major flare, I got what appeared to be a

small hard round cyst. Nothing to see from the surface besides a

bump, and when touched could move it around slightly, just like a

normal cyst. I thought nothing of it, till one day I noticed that I

had a few more, and then after a little while, they started to turn

pinkish and shiny on the surface of each one.

They got a little sore, cause they were right on the knuckle, and so

there was a lot of movement. they also started to restrict my

movement due to there being so many in such a small area. They still

just looked and felt like a collection of cysts, all seperate, no

rash, but each one was shiny and pink right on the top, normal skin

around them, so nothing like the picture in the links you sent. (red

angry rash)

Then they started to develop a dent in the centre of each cyst,

looking for all the world like a doughnut, still shiny and pink, then

they started to get quite sore. I had them for ages, and eventually

they faded away. They were quite unsightly at the worst. The whole

knuckle looked swollen and red.

The Dr that I went to with them, said that he had only ever seen them

on an SLE patient,and they were predictive of SLE and virtually told

me then and there that I had SLE, which was interesting as I was

under investigation at the time by an immunologist who also came to

the same conclusion that I had what appeared to be mild SLE, although

time would tell for sure.

So that is why I am so interested in them, as my current Dr's are

starting from scratch, and have disregarded all previous opinions and

diagnosis, and in the absense of some symptoms that I have had that I

feel may be pertinent, such as these, and sun sensitivity etc I am

still pretty sure that I have SLE with secondary sjogrens, but have

not dared tell my Dr's that!

Any help appreciated, anyone recognize the above description?

(longwinded I know, sorry, but it is hard to describe something

visual like a rash, in text form)

:-)

[Guest guest]

"OMG! Another bogus diagnosis, by yet another dickhead Dr!!!!"

LMAO ! And you sound so surprised!

That has to win Quote of the Week!

"So here is a description: on my knuckle, when in a major flare, I got what appeared to be a small hard round cyst. Nothing to see from the surface besides a bump, and when touched could move it around slightly, just like a normal cyst. I thought nothing of it, till one day I noticed that I had a few more, and then after a little while, they started to turn pinkish and shiny on the surface of each one. They got a little sore, cause they were right on the knuckle, and so there was a lot of movement. they also started to restrict my movement due to there being so many in such a small area. They still just looked and felt like a collection of cysts, all seperate, no rash, but each one was shiny and pink right on the top, normal skin around them, so nothing like the picture in the links you sent. (red angry rash) Then they started to develop a dent in the centre of each cyst, looking for all the world like a doughnut, still shiny and pink, then they started to get quite sore. I had them for ages, and eventually they faded away. They were quite unsightly at the worst. The whole knuckle looked swollen and red."

Keep all of that - print it NOW - and when you see my immunologist/allergist/ologist-of-ologists lol tell him. He will be facinated (if not exhausted! lol) It you can get a picture of one it would "be useful."

What you described I get also, but when I get them my hands get totally swollen and I can barely move my fingers. Does this happen to you also?

I've harped on about sarcoid with you but hon - lol - the more you tell me the more it fits! (Mind you so do 500 hundred other things) but sun sensitivity is a HUGE sarcoid thing. It makes you MEGA sick.

And I'd say thats why you aint on prednisone, plaquenil etc from Dwyer as sarc can only be diagnosed by elimination. Has he done a chest X-ray or high rest chest CT scan??

Still to read about the sleep study - I'll get to that! LOL

*HUGS*Love isha.

[Guest guest]

****You get them? Well, what does your Dr say about them????

He is yet to see them also. My hands totally swell up when I get them. I explained it all to him. Its a known thing to go with sarcoid so I guess he is putting it all down to that.

He gave me some cream, OTC stuff I can give you the names of if you need, they are basically anti-inflamitory creams, but they smell and that sets of the palatal myoclonus so I cant use them. Hell I should post the damn stuff to you and you could try it.

Other then that - cause he hasnt seen them he cant really say so I dont know hon - sorry!

**Nope, just blood work, however I would like to have a chest xray to make sure that my ribs (pes excavatum) is not getting worse. Speaking of chests, I have had a cough for 5 weeks, it is starting to get better, as of the last week, however I did think that an uncontrollable cough for 5 weeks was extemely silly!What do you mean that is why I aint on pred. Do you think that Dwyer has sarc on his mind?? I would VERY much doubt it, I don't think he has anything but FMS on his mind when it comes to me!!

LOL - There are many diseases that are only diagnosed by elimination. So not just sarc. By you not being on prednisone or plaquenil - he is waiting to see what you next lot of results are so he gets a better scope at the new stuff he's looked into. (If he's look into anything??) If he had you on pred or something then your inflamitory responses would be different which might hinder a diganosis.

FMS? Well thats very general and does not account for about 80% of your symptoms such as sezures. You need a neurologist also I am sure.

With your chest X-ray - get them to do a High Res CT scan also of your lungs. Has your silly cough gone away? Recovered from your trip to Sydney? I still havent gotten through the archives to see how Lani's Sleep Study went but I can see you are pissed off at not knowing the results??

Let us know as soon as you do! Hope they reveal something that is useful. Which hospital did you have the study at? When do ya see Dwyer again? Hope things are better with Jai, and that the news is good.

*hugs*Love Aisha

[Guest guest]

Hi Aisha :-)

> He is yet to see them also. My hands totally swell up when I get

them. I explained it all to him. Its a known thing to go with sarcoid

so I guess he is putting it all down to that.

**Hmmm I am confused now, as my hands didn't swell with them, just

the knuckle that they were next to. Maybe it is a different thing.

How many of the cysts have you got?

>

> He gave me some cream, OTC stuff I can give you the names of if you

need, they are basically anti-inflamitory creams, but they smell and

that sets of the palatal myoclonus so I cant use them. Hell I should

post the damn stuff to you and you could try it.

**Don't have any at the moment. It is strange, but everytime I have

another flare, it is different, last time the main problem was the

eye's as you know this time it is the IBS that is flaring right up

and keeping me up at night. I am feeling myself drop down into a

flare, getting worse day by day. I don't want another one *stamps

foot* am only just recovering from the last one, and these IBS

symptoms although I have had them for a long time, are getting really

yucky and painful, will spare you the details have no fear!!!

Speaking of bottoms, how is yours? *grin*

..

>

> FMS? Well thats very general and does not account for about 80% of

your symptoms such as sezures. You need a neurologist also I am sure.

**You are probably right, YOU can ring and tell Dwyer though, OK?

Cause I am not gonna! LOL

>

> With your chest X-ray - get them to do a High Res CT scan also of

your lungs. Has your silly cough gone away?

**Nope not yet.

Recovered from your trip to Sydney? I still havent gotten through

the archives to see how Lani's Sleep Study went but I can see you are

pissed off at not knowing the results??

**Got some, she is on a cortisone nasel spray for a while, my

dickhead GP couldn't understand the results, that were sent to him,

so had to ring for an interpretation, however, the bit that I did

understand was that her adnoids may be some of the problem, shame

they didn't remove them when the took her tonsils GRRRR!

" Snoring with increased work of breathing and tracheal tug on

occasions, was noted thoughout sleep. Nasel airfow as notched

thoughout (signifying a degree of upper airway resistance) and was

markedly reduced during REM sleep " Sleep efficiency was 66% "

Then there was a lot of figures, that I cannot interpret, so will

have to wait, stuff about heart rate, respiratory and oxygen

saturation etc. WIll let you know, but at least they found somthing

that may explain some of her impossible behaviour as I was ready to

sell her, if they told me that everything was normal, here is hoping

that the nasel spray works!

>

> Let us know as soon as you do! Hope they reveal something that is

useful. Which hospital did you have the study at?

**Childrens hospital in Randwick

When do ya see Dwyer again?

**Dunno GRRR while I was napping today they rang and left a message

about cancelling my appointment on the 1st Nov, so will ring tomorrow

to see what the bloody deal is. Better be a good reason, cause I want

him to see me in the middle of another flare, and that wouldve been

pretty good timing methinks.

How is the unpacking going? Have the dogs gotten used to the kittens

yet? How are your symptoms? Tell me, tell me everything! LOL

Toodles

[Guest guest]

Hi ,

**Hmmm I am confused now, as my hands didn't swell with them, just the knuckle that they were next to. Maybe it is a different thing. How many of the cysts have you got?

Well right now my hands are back to the swelling thing but no lumps yet. I think it might be different from yours also. Dont quite sound the same.

***I am feeling myself drop down into a flare, getting worse day by day. I don't want another one *stamps foot* am only just recovering from the last one, and these IBS symptoms although I have had them for a long time, are getting really yucky and painful, will spare you the details have no fear!!! Speaking of bottoms, how is yours? *grin*

Oh Rach...um, sexy and georgous as always!! *laughs*

**You are probably right, YOU can ring and tell Dwyer though, OK? Cause I am not gonna! LOL

Hahahah ok - I can do that. I will say I'm you though! *grins*

**Got some, she is on a cortisone nasel spray for a while,

Would that be rhinocourt? Got a list of sprays actually if you need the list just say. Hope you get the sleep study stuff back soon. I have no clue as to what everything you said meant! LOL

"How is the unpacking going? Have the dogs gotten used to the kittens yet? How are your symptoms? Tell me, tell me everything! LOL"

Ah sheesh...

* Dogs and cats are reunited and wonderful

* Symptoms are bad again (but then again this is week two of period that didnt exist for 4 months.).

* Headaches better on higher dose of rivotril, although this could be cause of hormones too - so who knows

* My posh bathroom/ensuite is coming along well. Having fun interior decorating. Got the wooden venetians yesterday. I'm still camped out in the lounge room cause I cant breath in our area due to paint and woodstain smells.

* Have new infection - some strain of staph. Have to look into it and see what that means.

* Um, er .. not much more to tell. Am considering going on a no chocolate binge again. LOL ... but maybe not.

Talk soon hon *hugs*

Love isha