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Hi there
I've registered today and am hoping for some advice.

My husband has been diagnosed with the following:
Autoimmune Hearing Loss
Crohn's Disease (two acute attacks, in remission since 1985)
Heart Failure caused by either a virus or an autoimmune attack
Inflammation - mainly in his legs
Diabetes - type 2?? (I'm not convinced).

He also has skin rashes which haven't been given a definite diagnosis.
He's had two strokes.

Until almost two years ago he was managing to lead a fairly independent life. He then developed Heart Failure, then Skin Rashes and Diabetes a few months later and had his second stroke in June of this year. He is already on warfarin and the stroke was very minor.

He is very closely monitored at the hospital. His heart doctor is puzzled by some of his symptoms and has said he believes "something else is going on". Gary has a lot more chest pain, fatigue and dizziness than expected with the degree of Heart Failure. (The doctor believes him, he's just puzzled).

The skin rash started fairly suddenly. It's been diagnosed as eczema, psoriasis and contact dermatitis. Several members of his medical team have suggested he sees a dermatologist but our GP refuses, saying he can treat it himself.

I have felt for a long time that Gary has some sort of "widespread" autoimmune condition which targets different parts of his body. I spoke recently to the GP about a specialist looking at his conditions as a whole to maybe shed some light on them. He said there was no such doctor. I asked about a rheumatologist but he said it wasn't appropriate.

Currently Gary is convalescing after a prolonged infection. It's left him very weak.

What can we do next?
 

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Hi Kathy,

Welcome to the site.

I assume your husband is presently being treated for his rashes. Once done with the first round of treatment if the rash still exists I recommend he see a dermatologist. If your GP still declines to do a recommendation even after present treatment fails change doctors.

I don't have any suggestions for the other problems. It is difficult to tell if they are related or not.

Take care,
Lazylegs
 

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Hi Kathy,

Welcome to the lupus site. :)

Has your husband been checked for "APS?" (antiphospholipid syndrome)
The reason I ask you that he has had strokes. Here is a definition.

Antiphospholipid syndrome is a condition that can cause clotting within your arteries or veins and various other problems, some life-threatening.
Antiphospholipid syndrome may cause clots to form in your legs, a condition known as deep vein thrombosis (DVT). Antiphospholipid syndrome may also cause blood clots to form in organs, such as your kidneys or lungs. Damage depends on the extent and location of the clot. For instance, a clot in your brain can cause stroke.
In antiphospholipid syndrome, your immune system mistakenly produces antibodies to certain proteins in your blood. Antibodies are specialized proteins that normally attack body invaders, such as viruses and bacteria.
There's no cure for antiphospholipid syndrome, but medications can be effective in reducing your risk of blood clots.


I found it here.
http://www.mayoclinic.com/health/antiphospholipid-syndrome/DS00921

Could your cardiologist refer you to a rheumatologist that specializes in Lupus?
Has that GP run any tests for lupus?
Here is a page that tells about what blood tests they run. It is actually the main page of this web site.

http://www.uklupus.co.uk/tests.html

Here is what they look for when diagnosing lupus.

http://www.uklupus.co.uk/dxlupus.html

I also have heart failure. From what they don't know.

Have a good look around the site and post questions. Tell your husband he is welcome to join us too.

Take care and I hope you find answers to your questions.

Lyn
 

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Hello Kathy,
You are in a very trying situation, both of you.
I am wondering if the Cardiologist would consider a referral to another Consultant. Screening for a systemic problem, as you say taking the whole view would be good. This might get him a referral without your GP standing in your way. A persistent skin problem is very distressing and your GPs insistence on "treating it himself" with no good results is rather concerning.

Your Husband is fortunate to have you on his team and I am sure you have already gained some good experience in advocating for him.

There is always the option of a decent private appointment, can be possible without referral in extreme cases. London is ideal but I am unsure how difficult the travel would be for you. Many of us found it was worth the initial expense of a private appointment or two to get the ball rolling. Also it gives you TIME to discuss everything. We all know this is an expensive option and shouldn't be necessary but for many of us it was the way to go.

x Lola
 

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Hi Kathy,

You have been given great advice here by the ladies. I can not think of anything to add. I just wanted to welcome you here and wish you and your husband luck moving ahead. I agree it does sound like something wide spread and auto immune is attacking his body.

Please keep us posted as to how you make out moving ahead and remember to take time for yourself to rest. As the care taker you must do this.;)
 

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Hi Kathy and welcome to the site. It is a great place to find info and support. The others have given you excellent advice. You could really do with seeing a dermatologist, you do have that right. Your cardiologist can refer you it just takes longer, the cardio could also refer him to a rheumy, but I would start with a dermy. Once you have established what is causing the rashes you can move forward. I am suprised your gp is so unhelpful, he is not acting in the best interests of your husband. Maybe it is time to change gp, I dont know how practical this would be for you.

Let us know how you get on.

Take care

Deb
 

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Hi
I agree with Keebler. See if your husband can be checked for APS in particular glycoproteins. I tested negative for APS then had a stroke and tested positive for Beta2 glycoprotein. I have had strokes, DVT's and PE's whilst on warfarin. I am monitored closely by the hospital and my haematologist is very good. It is so difficult to be transferred over to a different team of drs because of funding issues in hospital but its worth asking.

Take care
 
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