Feeling fed up again

[balla]

Well hi to everyone,
Just been to see my maxifacial doctor was waste off time i thought when i first seen him i was finally getting somewhere,well i was wrong once again as when i first went he said it was deffinant sjogrens that was causing my dry mouth,eyes,skin (my husband says crocodile skin its that dry). Virgina.well as the blood tests came back negative for sjogrens he said this could happen for many years.well its been happening for years now,The next thing he said is "WELL ITS TO DO WITH WHAT IS HAPPENING WITH YOUR NUEROLOGICAL PROBLEMS ITS ALL LINKED TOGETHER" god i'm so sick of hearing the same thing if they know its linked and its all belonging to the same problem then what is it,My heads going round and round My GP says the same thing "ITS ALL RELATED".I HAVE BEEN TOLD M.S THEN SARCOIDOSIS,SYSTEMIC LUPUS,As you see the list goes on and on.So at the end of the day the maxifacial doctor said he wants me to carry on with the steroid mouth washes and if it gets worse he said something about putting me on thalidamide but last resort,anybody know anything about this?but says he is discharging me as its all related to the nuero problem so leaving me up to proff mitchell,(nuerologist)and my GP will be getting sent a letter he says i might need these steroid mouth washes for life who knows,
Well just waiting now for phone call off nueropsycologist as i thought i have been waiting long enough for results 6 week i want some answears.feel as if i'm going nuts.
I'm sick off the blood tests just wish they would put me out of my missery,In the last tests said it shows a number of autoimmune disease's and also vasculitis,Well thanks for letting me go on i feel as if people here know what its like,my hubby is good but does'nt say anything just looks at me i feel like he might be thinking is it just in her head,but 13 years of pain and i cann't make my eyes tell lies or the pressure in my head,or my mouth bleeding,dry skin etc.
bye for now who ever is listening thanks. style_emoticons/<#EMO_DIR#>/foryou.gif

[helloos]

Hi Suzie.

It does seem that these doctors are having a miscommunication. I think they all need to talk together and come up with the same thing.

As for thinking it is all in your head. You said that some tests showed auto immunde disease and vasculitis. Obviously these tests ARE showing something is going on. What tests and what did it show. I would think that would be enough along with your symptoms to diagnose you correctly. It seems they are brushing you off with you leaving uncertain of anything. Yes, it can all be related, but maybe you just need to come right out and ask, what is it? related to what?

I hope you get some sort of answer when this doctor calls. Write your questions down before hand so you remember to get some things answered.

Good luck
(((( hugs))))

[balla]

Hi,the doctor has wrote extensive autoantibodies reveal abnormalities also posative smooth muscle antibodies,this is reported as showing vascular pattern associated with wide range of autoimmune diseases,Serum and electrolytes and liver function test were normal,as were random blood and glucose and thyroid function.autoantibodies show changes with a vasculitic disorder. on another test it says oligoclonal bands in her csf,and mri showed empty sella syndrome,Also delayed visual evoked potentials in both eyes.
So although they keep looking at M.S they don't know as my symtoms and VEP show what they find only in M.S.but the dry eye and skin problems suggest LUPUS but nuerological problems are in both disabilities.
So all mixed up if doctors don't know how am i meant to people ask whats wrong with you and i don't know what to say. : style_emoticons/<#EMO_DIR#>/mad.gif
bye for now susan x

[hurley]

Hi suzie

style_emoticons/<#EMO_DIR#>/hugbetter.gif for you.

oh, and style_emoticons/<#EMO_DIR#>/foryou.gif

oh, and style_emoticons/<#EMO_DIR#>/flowers.gif for you.

You've really gotten the run around. But in the doctors defense, you REALLY are a "complicated" case. Nobody thinks you are making anything up. The doctors certainly wouldn't think so as you've had so many of the more crucial tests come up positive. They just simple don't know what to do with you! style_emoticons/<#EMO_DIR#>/aww.gif

If your neuro cannot come up w/a dx or is out of ideas for further testing, then maybe he can refer you to somebody who can. Are you being treated for anything? You certainly do exhibit distinct sx's for a number of different possible illnesses.

Hang in there and be patient with them. Many of us have had problems like this getting a dx, but you are certainly close to breaking Lily's record! style_emoticons/<#EMO_DIR#>/biggrin.gif

Take care, rest, destress.

Hugs.

style_emoticons/<#EMO_DIR#>/wub.gif

Julie

[balla]

Hi, yes i am getting treatment for individual things and also demylinating nuero problem as the doctors seem to want to put on my records.Thankyou for all your feed back this as been going on for the last 13 years but 10 years spent under proffessor mitchell,(nuerologist)i also had my brain op in 2002 so under mr golash(nuero surgeon)Well i'm still waiting for the nueropsycologist to get back in touch i have phoned every day this week.
Well bye for now susan style_emoticons/<#EMO_DIR#>/Thanx.gif style_emoticons/<#EMO_DIR#>/foryou.gif

[Lily]

(((((((((((((((((Suzie))))))))))))) style_emoticons/<#EMO_DIR#>/hugbetter.gif and style_emoticons/<#EMO_DIR#>/sad.gif I know exactly how you feel. Life wasnt meant to be easy for some of us thats for sure, you have a lot of fortitude and goodness knows you've needed it style_emoticons/<#EMO_DIR#>/sad.gif

Julie style_emoticons/<#EMO_DIR#>/laugh.gif Thats one record no-one wants to claim, but if you like Suzie you are welcome to it, seems like you've earned it! I'm so glad all that procrastinating is over and done with for me, it was such a frustrating, frightening time for me! So you have all my empathy Suzie, been there and done it.

I even had Llermittes sign for a while, that <almost> style_emoticons/<#EMO_DIR#>/tongue.gif had them convinced I had MS, but Lupus changed the rules and settled on Vasculitis as a cause for all my neuro stuff. Well most of it......... I had the odd bout of psychosis attributed to steriods and the odd hallucination that couldnt be attributed to it because I wasnt on them at the time style_emoticons/<#EMO_DIR#>/tongue.gif I ended up with some strange and pretty rare movement disorder called Dystonia. Chorea is the most common (not that its common at all) but the one they see more of with NPSLE. I just dont like to follow protocol, seems you dont fit into their neat little boxes either!

Sending extra hugs for strength and continued fortitude style_emoticons/<#EMO_DIR#>/hugbetter.gif

love
Lily

[balla]

style_emoticons/<#EMO_DIR#>/sad.gif Well everyone just been talking to my nueropsycologist on the phone he says if you can understand,
I have depression which i don't think i have as some years back i had a nervouse break down and realy know what depression is like.I don't feel down only when the silly doctors keep saying it's down to your illness,And another thing that he said was its to do with my eyes that i should focus on one thing at a time as when i cross the road i freeze he said its because alots going on and i can not digest it all.well how does that happen if there is nothing wrong with your brain.But also when i forget to wipe myself after the toilet etc this is because i have so much stuff in my head but don't know where he is coming from more confussion.
Well just hope i'm not cracking up with all this in my head.He said i need to step back and think what i'm doing.But doesn't take into account that when i'm out in the supermarket etc i'm in alot of pain and just trying to find the nearest place to sit to stop pain in my legs.
well think i will just see what my nuerologist has to say when report is sent to him.
bye for now susanx