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Hi All

I am 29 yrs old and was diagnosed with arthritis and psorasis (bad spelling sorry) when I was 15. Miscarried at 6 weeks when I was 23. I have Selective IgA Deficiency, anemia of a count of 7 if that makes sense to you and last year was diagnosed with Raynauds.

I am an active lady, I swim every day and own a horse and a pony (pony for my boys), we live on a 66 acre farm and own a business importing equestrian goods from the UK ( I use to own a riding school but had to give it up last year due to the illness and now am based at my home office). If I exercise everyday when I am feeling well it goes good but if I stop for more than one day I simply fall apart, find it hard to walk and sometimes walking the stairs can be tricky. I do not wish to lay on the sofa and give up but lately life is becoming more difficult and I have feelings of ' I dont think I can get throught the day, weeks and so on.

My symptoms:

Starts with flu feeling, tiredness, sore aching under the eyes down to just above cheek bone and confusion (first day or two, next day usually have raised bumpy type rash over cheeks and nose, sores inside mouth/sore gums and sometimes can have sores in nose. Aching muscles and general weakness in muscle areas. Chest feels tight, breathing can seem more noticable and hard work. This lasts for between 3 days to a weeks at a time usually once/twice a month.

Appts with 1st Rhumy (out in norway, I am Welsh but live in Norway) came up with fibromayalgia but with raised CPK levels (showing damage to muscles, dropping within 24-48 hours after first test taken) he also said after x rays I have never had athritis. I was unhappy with the Rhumy and diagnosis so asked for 2nd opinion.

2nd Rhumy was much better at a hospital 8 hours away from home, the lady consultant said that I have psoriatic athritis and I do not have Fibromyalgia but I display the symptoms of MCTD/Lupus and could see from my medical records hair loss, ulcers, muscle probs etc have all be seen by my GP. So far all my bloods come back normal except a few raised CPK between 300 and once 2400 and one slightly raised CRP (if that is correct one for inflamation) and I have been tested 4 times over the past 2 years. So she could not diagonse but recommends retesting when I have an 'episode' and lots of follow ups as she feels perhaps the disease is in the early stages.

I am at my wits end, I have two children one of 2 yrs and the other a boy of 8 with ADD who can be very challenging, no family here in Norway to help and a partner who works long hours. I am now finding it hard to cope with daily life when I am ill.

I have considered going to St Thomas' as I understand they sometimes will diagnose without raised ANA blood work. The cost holds me back as I also have to pay for the flights and to be honest dont want to be further disappionted with the 'well it all points to Lupus but'....

What do you think of my situation and what would you do in my position?

I would appreciate any thoughts and would be extremely grateful for any advice.

Thank you in advance

Karen
Norway
 

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Hi Karen,


Nice to meet you, and I'm sorry to hear that you are having so many health problems.

What medications are you already on?

If the rheumy you just saw was confident enough to say maybe MCTD or lupus, I wonder if she would be prepared to treat you as such, without formal diagnosis? Really she should, and it is definately worth your posing this question to her. The first choice in treatment is plaquenil. It is a pretty safe drug but works well for most of us. Strictly speaking, it isn't necessary to be ANA positive to get a diagnosis. It is unusual, but certainly not impossible. The diagnosis is a clinical one - ie the doctor's judgement given all the evidence. And it sound like your doc is on the way to being sure of the decision.

How does the health care system in Norway work? Private or government? A written diagnosis has negative implications for insurance, so there are some advantages to getting treated, but not being formally diagnosed.

It is definately worth getting your bloods rechecked regularly - the whole "Lupus panel", plus urinalysis. Doctors differ on how often, but 3-4 times per year is probably about right for someone who is symptomatic. Obviously if something new happens, you should get it seen and doccumented.

I wonder about your facial rash. Sometimes a biopsy will reveal lupus before the blood tests show a positive ANA. You could ask the Rheumy or your GP for a referal to a dermatologist.

Given the distance and cost involved, I'd try these options before resorting to St Thomas', but of course they remain an option. In the long run, you need a doctor you can get too when you are sick, so the closer the better.

Keep us updateed.

X C X
 

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Hi Karen,

Cath has given you good advice. if you are not already being treated I would ask for that option. It seems quite likely that the doc will do that anyway as she wants to see you again soon. She sounds thorough and has listened to you.

I would be hesitant about getting yet another opinion at this stage as a rheumy who is willing to listen and who notices all sorts of past history as you described is a relatively rare thing and a very valuable one. I would give her a chance to tell you how she can help you and treat you.

I found that my first few visits to the rheumy left me feeling a little disappointed. I suppose because we expect so much and would so much like someone to just get us back to normal. The thing is that auto-immune disorders are complex and no that easy to diagnose but with patience you should be able to build up a good relationship with the rheumy and find some relief from treatment.

bye for now,
Katharine
 

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Dear Vixxy,

If you do meet a brick wall I would certainly suggest seeing Dr. D'Cruz at the London Lupus Centre. He works at St. Thomas' and diagnosed and treated me before my bloods were positive. He is also a very clever Dr. and a nice person. He is very fair and would not charge you exorbitantly.

Keep it in mind in case you need it, but maybe be patient with this Rheumy a litle longer.
x Lola
 
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