[JudifJ]

Hi all

Sorry I've not been around for a bit as life has been a bit rough. My husband has been very ill following a bad drug reaction and only went back to work this week after 4 months off. In the midst of it all I had a bad flare and managed to calm it down with a depo injection. My bloods have been all over the shop: the ones that were positive last year are negative this year, the new lab couldn't do some of the immunology tests as they had the wrong type of sample (I'm breaking in a new rheumy as we moved 200 miles and I've had to start from stratch). At least the rheumy is waking up to the fact that something's wrong with me as the latest MRI showed some abnormalities. The letter she sent said "it's probably due to your hypertension diagnosis" (right!) but she wanted me to have some bloods repeated (ENA,ANCA ,CCP) and had referred me to a neurologist!

When I went to have the bloods done yesterday at the GP's, the nurse had my file up on screen and the MRI results were there for all to see -- several high foci on both hemispheres consistent with lupus vasculitis. So the rheumy was sparing me????????

I'm just going with the flow as I can't fight anymore. Having had a couple of TIAs this year I'm living day to day waiting for something awful to happen as I'm not getting the right treatment. My GP has put me on pizotifen which is helping with the headaches. I will wait to see what the neuro and rheumy say on 15th September. If I'm still not getting anywhere I'll ask my GP to refer me to London, even if it is only to rule out lupus.

So, sorry once again that I've not been around but my mind is elsewhere and lost in the fog.....

Hoping you are all having a better day today than yesterday.

Love Judi xx

 

[Katharine]

Aw Judi (((((((hugs)))))))

I'm so sorry to hear that you've been having such a rough time. We prefer it when people disappear for a while because things are going so well.

I do hope that something concrete comes out of those appointments. Has no-one said anything about those TIAs and all the rest?

hugs to you,
:grouphug2:

Katharine

 

[JudifJ]

Hi Katherine

One of the reasons I've been referred to the neuro is for the TIAs. However, last year I had two positive LA tests but this new hospital haven't been able to test properly (must be tested within 1 hour of collection and deep frozen) as we are very rural and the immuno tests have to be sent to Ashford. Main reason I want to be referred to the lupus specialists in London who would do the tests on the spot. I have many of the attributes of APS as well as lupus, with neuro symptoms overlapping both (was "probable MS" in the past.....). At least I'm having a respite from the headaches now that I have balanced the dose of pizotifen.

Hope you are doing better than before: you were having lung problems as I recall.

Take care

Judi xx

 

[Katharine]

Hi Judi,

Yes, we have the same problem with the blood tests though I'm lucky a hospital about 20 mins away does my blood tests even though I'm not treated there. However I had one very high positive blood test, and then, inbetween tests I had started on imuran (which I'm told can alter the tests by improving things) and the second blood test the leb broke the tube so I still don't actually know exactly what. My neuro and rheumy both want me on aspirin anyway preventively.

What's odd is that if you already had two positive blood tests and TIAs why have you not been given treatment of some kind?

My lung problems are fine for the moment. I have had to remain at 12.5mg of pred. The lung specialist was the first doc I met that thought it was truly wonderful I was taking pred :lol:

Anyway, no "damage" was done, no signs of fibrosis and it seems mainly due to polymyositis and weak muscles around the rib cage and in the lungs themselves. I still have a sort of oppressive feeling when I breathe in deeply but otherwise I'm good.

I'm glad you have at least managed to control the headaches andf hope that the rest gets sorted very fast.

Katharine

 

[KarolH]

I hope life calms down for you and that you get some answers.

I will say a prayer that your husband gets better and things go smoothly for you from this point on.:wink2:

 

[Lily]

Hi Judi,

Nice to hear from you again but I'm sorry things have been so tough for you and your family

I just want to wish you well for your upcoming appointments. I am glad you will be seeing a Neurologist, even when a radiographer interprets something on MRI it isn't gospel, wait and see what the Neuro has to say. I speak from experience

Was your MRI done with dye? It's difficult to tell what lesions are from unless the films are read by expert eyes in the context of your symptoms. Your Rheumy is obviously reserving judgement until she does get some expert eyes on it via the Neuro and it's good that she is doing that.

I'm glad the pizotefen is helping that's a promising sign that it may very well not be vasculitis. I wouldn't have thought CNSV would respond to that drug but then I never had it, they turned their attention to controlling the disease process rather than the symptoms. From your blood test history and the TIA's/MS type symptoms it is surprising that you have not been considered to suffering from APS. Perhaps the diagnosis will come once you see the Neuro - I sure hope so.

Do let us know how you get along.

sending hugs,

love
Lily

 

[Surferboy]

Hi Judi, so sorry to read things aren't going too well for you.

I think that if the dr's down your way can't sort anything out for you fast you should absolutely 100% demand they refer you to somewhere like St Thomas's or UCL (i think thats where it is) as these places are specialists in SLE.

In the mean time be strong

 

[halfpintfl]

Hi Judi, I am so sorry to hear all those things that have been happening to you and your hubby this last months, and months. I know how hard it is to get a good dr.
I have a lovely Rheumy, but since January 1st of this year, We have gone thru 4 GP's. It just makes you wonder: did they all graduate at the bottom of the class??
You and your Hubby will both be in my thoughts every night as I go to bed. I wish the fastest and best healing for the both of you. please keep us posted. smile

 

[LolaLola]

Dear Judi,
It is good to see you back.I can thoroughly recommend Dr, D' Cruz either privately or NHS. He is world renowned re. Vasculitis. I know private appointments are an expense but if you get really desperate it may be worth it.
meanwhile I am sure your situation must be quite frightening, don't put up with too much delay.
x Lola

 

[lin]

Dear judi so sorry you nad hubby have had bad time this year,
i just w2ant to with you all the luck for september my fingers are crossed for you

hugs Lin xxxxx:there::grouphug2:

 

[cmfinnis]

Hi Judi,

It's Cathy here! Just read all that and thinking gosh, I hope you get your appts through soon. Tias are scary - I had a couple a while back. Not nice and are you on aspirin at least?

I have had trouble with the APS bloods too - and I live in Kent as you know. Even in London they weren't always consistant - mostly I had mine taken in CAnterbury hospital, no idea where they get analysed from there.

I hope we meet again soon

love Cathy x

 

[JudifJ]

I have spent an hour writing a reply to each of you then IE in all it's wisdom deleted it before I could post it!

To summarise:

Thank you all for your thoughts and prayers. I have planned that if I get nowhere with this current set of testing then I will either get my GP to refer me to London or I will go privately. I can't take aspirin as it conflicts with the NSAID I'm taking and my stomach is already suffering (on double stomach meds now). My MRI wasn't done with dye, but I hope the neuro will do some further investigations to clarify.

I've been relatively OK this week with some odd speech and balance problems and the ol' joints are stiff and painful. APS is much to the fore as in the past I have had a PE, migraines, TIAs, livedo reticularis and other symptoms and I have had a "possible MS" dx as many in the same position have had.

I am frightened about what will happen next as I am largely untreated, with just symptoms being treated. Am I a walking timebomb? With TIAs happening how long will it be before I have a major stroke? I have put it all to the back of my mind while I have had my husband to look after but now he is on the mend I am getting more anxious.

Hope you are all having a painfree and happy weekend.

Love Judi xx

 

[LolaLola]

Don't you hate it when the Computer loses all your hard work?
I can understand you feeling like a time bomb. It is good that you are thinking ahead to London if necessary. Certainly you can't go on.
Now that Hubby is a little better is there less stress on you? Is there anything at all you can do to make life easier. Sometimes it may feel like "giving in" but really it could help you have strength for the things you need to do.
Meanwhile it would make my day to hear you have had something nice, how about some earrings, or a paperback or even good old chocolate?

X Lola

 

[JudifJ]

Hi Lola

Something nice is happening today: my "baby" is coming home from holiday in Cornwall and we are surprising her with a little runaround car we have got her for her 18th birthday. I can't wait to see her face when she realises!

I'll let you know what happens.

Judi xx