Help, please

[Suecon]

Hi. I don't know if any of you recall my on- going struggle with ill health and a 3 year failure to get a diagnosis but I'm hoping someone can advise me. Although my butterfly rash is becoming more defined now I still have no antibodies to point to any sort of disease, apart from those confirming LA. However, I'm now getting only one or two days of relative normality a week, the rest of the time I'm in bed with temp, pain and exhaustion, and unfortunately depression is creeping in. I have such a limited life now and on top of that there is the swollen tongue I get if I eat any fruit or vegetables. I would be very grateful for any suggestions, especially as we want to move house very soon and my son is getting married in Prague in May and I'm dreading both as I just don't have the energy.

My diet is quite restricted, as you can imagine, and I'm also lactose, wheat/gluten and soya intolerant.

What are the chances of my GP prescribing a low dose steroid, do you think? Could it help? 2 rheumatologist have said I don't have lupus and now others are refusing to see me.

Many thanks

[PMRpro]

You may not have lupus - but you appear to have something autoimmune,

[Suecon in reply to PMRpro]

Thanx for replying, PMRpro. I have several autoimmune diseases - pernicious anaemia, vitiligo, early ovarian failure, hashimotos, psoriasis. Also raynaud's, eczema, asthma and eczema. Plus continuous iron anaemia and migraine

[Tiras]

Hello Sue;

I don’t have any answers for you, you definitely have something going on hopefully the doctors can get you some answers soon!

In the meantime know they You are in our Prayers & Thoughts!

Wishing You The Very Best!

[Suecon in reply to Tiras]

Thank you

[baba]

"no antibodies to point to any sort of disease, apart from those confirming LA. "

Are you having any treatment for this?

Lots of information on the following sites.

ghic.world/

healthunlocked.com/hughes-s...

[Suecon in reply to baba]

Nope. My GP referred me to rheumatology when we got the results but they cancelled it, with no explanation given. I've tried low dose aspirin but it makes my usually very mild asthma much worse. I've been referred to immunology but a shortage of specialists and very long waiting list makes it unlikely that I'll get an app any time soon. Tbh I feel deserted and alone with this and frightened by the lack of help. I am married with adult children, all of whom are lovely and helpful: it's the lack of medical help I despair of

[Lisalou19]

Hi Suecon

I don’t know if you have the time or energy, but I got exactly to this point in January 2018. In the end I made an emergency doctors appointment almost everyday for 2 weeks, each time I was able to show physical symptoms. It was at this point I was finally prescribed steroids and finally found a path to diagnosis.

X

[Flueby]

Sorry u r having such a rough time. .wondered if u should see a nutritionit or dietitian? ..helped me with identifyin food allergens individual to me? Good luck xx

[Suecon]

Thanx for replying. I'm reluctant to spend the money when my swelling tongue tells me what I'm allergic to tbh. I have very few stomach problems since eliminating all gluten and dairy from my diet

[Pussbella]

This is very difficult and horrible to live through. It sounds as of the immunology appointment is vital. Would you be able to go privately to speed things up? It sounds as if you have an allergic component as well as autoimmune which is why, for you, seeing an immunologist might be the breaktthrough you need.

Have you looked up mast cell activation disorder, MACD? This causes many of the symptoms you describe. Or a close relation - histamine intolerance? I have a diagnosis of histamine/mast cell problems side by side with autoimmune - Uctd and Sjogren's. I take prescribed antihistamine medication and a mast cell stabiliser as well as HCQ.

To treat these conditions I see a rheumatologist and an immunologist. The doctors work together - it helps that they used to work in the same hospital and are aware of each other's research interests.

This field is quite specialised. If you would like to more info please PM me.

The treatment has made a world of difference to me particularly with the headaches/migraine, joint pain and the range of foods I can eat. At one stage I could not eat in restaurants without being very ill and even smells could trigger an attack.

Very much hope things get better for you.

Best wishes

PB

[KayHimm in reply to Pussbella]

Sounds like a great suggestion. Yes, MCAD seems to be considered more and more in patients with autoimmune disease. You and I are similar with UCTD and Sjogren’s. I started having crazy allergic-type reactions and they were considering MCAD. It was ruled out by an immunologist expert in the field. My reactions are from my autonomic disorder. That is so good that you were able to get a diagnosis — not an easy one — and that the treatments are effective. You have a lot to contribute on this forum!

[Pussbella in reply to KayHimm]

Thank you for your kind reply. Actually I have learnt huge amount from you and others on this forum. I even got the name of the wonderful rheumatologist who diagnosed my autoimmune stuff from the forum.

I am lucky to have a diagnosis and treatment.

Bw PB

[Suecon in reply to Pussbella]

It's interesting you should mention that, Pussbella, as I've been looking at mast cell activation for a while. At first I thought it was something I could identify with but it now seems a bit extreme for my symptoms. Histamine intolerance I can definitely see as being a problem, tho, esp the extreme pollen allergy complement.

I think I've gotten myself into a bit of a hole with all this and I can feel depression lurking on the outskirts. Having said that, my good days also bring optimism. Chicken and egg situation. Thank you for your suggestions and comments, it is much appreciated and I will certainly think about a private appointment x

[Pussbella in reply to Suecon]

If you think mast cell or histamine could be factor it is a good idea to go to an immunologist who is familiar or does research in the field because it is so specialised. There are only a few in the UK. I travel over 200 miles to London to see mine and because of where I live this has meant going privately. The good news is the medication for these problems is inexpensive and my NHS Gp is happy to do the prescribing - even if he was not the cost of medication would be low.

I very much hope you find some answers.

Best wishes

PB.

[Suecon in reply to Pussbella]

Thank you, Pussbella. You've give me plenty to think about. I was prescribed antihistamines to take every day 2 years ago when I saw a dermatologist and mentioned the tongue swelling. Strangely it got worse lol