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val
10-21-2006, 04:54 PM
Hi all,
I haven't been around for a while, I decided to try to get on with my life but I am having increasing breathing problems. I wake up with panic attacks--gasping for breath but even when awake sometimes I feel as if there is not enough oxygen in the air. I have had bouts when i have felt very weak when breathless and twice seen the GP. I have had ECG's , bloods and they don't seem concerned. I am asthmatic but it doesn't feel asthma related. I also have a heart murmer which is classed as trivial. I was a nurse for many many years and try not to get things out of proportion but it does concern me. I do get costochondritis also but that is not usually causing me a problem when I am having breathing problems.
I go to London to the lupus clinic in january and will mention it then but I wondered if anybody else experiences this.
Val

MARYCAIN
10-22-2006, 06:26 AM
Have you actually been diagnosed with panic attacks? If so, are you taking medication for the symptoms? If you are, it sounds like you should talk to your therapist or doctor about this.

As a nurse, you know the different ways lupus can affect your heart and lungs _ I asssume you are fairly sure this isn't pleurisy or pericarditis. Are you having any symptoms that could mean a cardiac problem, fluid retention, ankle swellling, anything like that? You mentioned ECG and lab tests, have you had a chest x-ray and echo cardiogram to rule out other problems that can occur with lupus?

I've had asthma since childhood, so I know what you mean when you say this shortness of breath is different - for me an acute asthma attack is like trying to breath through a straw. I'm not sure how close you live to London, but I'm wondering if the air quality there might be affecting your breathing. I've only been to London a couple of times but it seemed very smoggy to me, much like Los Angeles here. If there is a pulmonary specialist at the lupus clinic, it might be good to ask about a referral.

val
10-22-2006, 07:15 AM
I really feel that apart from my Gp nobody is really interested in me. I live in Leicester--the centre of UK. I go to London yearly as Leicester were not taking me seriously.Dr Graham Hughes diagnosed me as I am sero negative and Rheumies just don't take me seriously. I was investigated for sleep apnoea then discharged. Never seen Respiratory specialist. I had heart echo some years ago when they found heart murmer and Arrythmia but not since. Nobody has diagnosed panic attacks but I am very claustrophobic so assumed they go together--I have APS.
Over the last few months I have just got on with life as I am so fed up with the battle for care. i know I am ill and slowly getting worse but nobody seems to care. Reading back it sounds like self pity--its not meant to. I don't do self pity or depression, but how ill do we need to be before we are taken seriously,
I have SLE, APS, Sjogrens Syndrome,Fibromyalgia, Poly Arthritis. Osteo Arthritis. Thrombocytopaenia, High Blood Pressure, High Cholesterol, Hypothyroidism, Heart Arrythmia,Plantar Fascitis,Asthma.Costo Chondritis. Blood in my wee.
I have had my ulna nerves moved as they were trapping but i still get numb fingers.
I have balance problems--have to walk with a stick.
Nephrologist Discharged me.My Haematologist is discharging me in January, My Rheumatologist is discharging me if bloods stay negative. That leaves me with a yearly follow up in London.
I am sure you can see how frustrated I am.

Is care any better in USA!!
Val

MARYCAIN
10-22-2006, 08:06 AM
I wish I could say the health care here is better - unfortunately, lupus patients here have many of the same problems you describe - so I think this must be something about the medical profession everywhere. Unlike the U.K. and Canada, we have no national health, and many people don't have health insurance, so the cost of medical care is a big factor for a lot of patients. We don't have the lengthy waits for specialists and surgeries that I understand can be a big problem.

With your history of APS, I would be concerned by the episodes of breathlessness you are having. Are you on anticoagulant therapy? I also have apls, although mine is secondary to a lupus/scleroderma overlap, I've had several dvts, two minor strokes and a PE so I take the condition very seriously - I'm a bit surprised that your hematologist is considering discharging you. I have been told that this particular problem requires lifelong treatment and monitoring.

You mentioned Dr. Graham Hughes - I've read several of his articles on lupus and his alternative crtiteria for lupus diagnosis. Does he actually treat patients or just do consults?

It sounds like the problems you are having are mostly with the specialists - does the system there allow your gp to treat you and admit you to a hospital if necessary? If so, you might have more luck getting your gp to treat your symptoms more aggressively. I think you definitely need to see someone about the shortness of breath.

val
10-22-2006, 11:14 AM
Hi Mary,
I take Plavix as I cannot take aspirin coz of asthma, they are holding back on warfarin, as I had Thrombocytopaenia and have a history of bleeding.It has been suggested, I have memory and balance problems plus headaches. My EEG showed circulation problems consistant with APS.Mine is also secondary to SLE.
Dr Graham Hughes has now retired but just has a private practice. He is a lovely man.
My GP is excellent but not good on lupus, he will refer me anywhere.He can admit etc.
Thanks for listening. I don't moan often but feel so alone with this illness at times.
As a nurse I really cared for my patients, I wish somebody medical would care about me
Val

KayCee31614
10-22-2006, 12:49 PM
I have been reading your post here and I can sure relate to how you feel about the doctors. I don't have Asthma or Aps or anything like that, but I do have SLE. I know how it feels to have the doctors not take your case seriously. I went for nearly 20 years before I finally got dx with SLE. I was 36 years old and nearly died when I finally got diagnosed. I could not even get a doctor to refer me to a Rheumatologist or anything. You see I have Dyshidrotic Eczema and every time I would go to the doctor they would focus in on that and not listen to me at all. I was getting worser and worser. You see my Lupus came on insiduously. What finally got me dx was when I went to a GP that was new in town and the only doctor here that was seeing new patients. When I went into see him I was having a horrible time breathing. It seemed like I could not get enough oxygen. I was having pain up into my neck and jaw on the left side. My heart was not beating right at all and I was terrified big time. I had the malar rash and was blown up like a balloon. I had mouth ulcers in my mouth, nose and eyes and other places downsouth. It was terrible and the Eczema was broken out really bad as well. Thank God this doctor listened to me and ordered all the tests he could think of for Lupus. I have a family history of it big time. Well come to find out I was having a severe flare and had what they believe Myocarditis and my CPK was extremely elevated. My ESR was very elevated. I had severe Leukocytopenia big time and my ANA titer was way up there and speckle patterned. I was also diagnosed with Sjogrens at the same time. When the Rheumatologist saw me 1 week after the GP diagnosed the SLE, he told me that I had the most clear cut case of SLE that he had seen in all the years of his practice. He told me that I did indeed have Mycarditis and had I not gotten diagnosed when I did that I could have died instantly. That was frightening. He put me on a lot of medications and got me under control. Now I take only Plaquenil, Imuran, Sulindac for the Lupus. My Rheumatologist has been treating me for 12 years now and so far I am doing ok. I hope that you do not give up. It could kill you if you have it and it is left untreated. I wish you the best. Kathleen

val
10-23-2006, 09:12 AM
It seems Dr's world wide need educating on Lupus symptoms and how to deal with them.
Val

stjames13
10-30-2006, 08:26 AM
8)
VAL
I do not know if you are on any kind of OPIODS for pain.

But if you are remember that ANY OPIOD depress's the respiratory system.

Most people whom you read about over dosing did not over dose they died due to the respiratory sytenm slowing down to much.

My wife claims sometimes I breathe only 3 times a minute at night....it scares her but having the Morphine in my system does that.

BUT to be sure I would have it checked by a DOCTOR....you may have COPD, or pneumonia.....so the next time you see your DOC let this be one of the first things your bring up !!!!!!

Let me know how you make out !!!!

STjames 8) :wink:

val
10-30-2006, 09:27 AM
No I don't take morphine. I have COPD==I am asthmatic but that is not the cause of my breathing problems. I feel like there isn't enough oxygen in the air at times. I told my Rheumatologist he didn't even bother to reply !!!
Val

MARYCAIN
10-30-2006, 09:38 AM
Val, forget the rheumatologist on this issue and find yourself a good pulmonary specialist! With COPD you are much more susceptible to lupus related lung problems including fungal infections of the lung. Remember that rheumatologists are actually specialists in ARTHRITIS! They often end up treating lupus patients by default because of the arthritic symptoms involved in lupus, but lupus is often not their primary interest of interest or expertise, so you may need to see a specalist for lupus-related complications that affect an organ system other than bones and joints. This could be a serious problem and you need to have a doctor who will treat it seriously!

val
10-30-2006, 09:55 AM
I am in Uk and here we cannot self refer somebody has to refer us. i am going to London Lupus Clinic in January I will speak with my Consultant then.
Val

MARYCAIN
10-30-2006, 10:14 AM
Most specialists here - I guess what you call consultants in the U.K. - also require a referral, but most GPs will refer patients to a specialist when asked. Can your GP refer you to a lung specialist because of your COPD and asthma?

val
10-30-2006, 12:28 PM
Yes he could. I feel despondant here where i live. I have seen since 2001. Orthopaedic, Neurologist, dermatologist, Nephrologist, 4 Different Rheumatologists, 2 Haematologists, Gastro Enterologists. 2 Opthalmologists, they see me decide whats wrong or not then discharge me, my GP and London Lupus Clinic are the only people who really take me seriously. Dr Hughes diagnosed me himself (I am sero negative) 3 Rheumatologists have said"His diagnosis is wrong"
What chance do I have.?
It is written that 90% of Lupus sufferers are ANA positive , that means that 10% are sero negative but only a Lupus specialist will diagnose that, and there are not many of them in UK.
Its such a battle to be treated so I stay away from Hospitals as much as i can.
Val

MARYCAIN
10-30-2006, 01:07 PM
I know you must get terribly frustrated - a lot of lupus patients here have similar problems, especially if their labs are negative or inconclusive. I was lucky in that when docs finally figured out my strange and seemingly unrelated medical problems might actually be related, when they finally did the antibody tests, all the labs were positive and ANA titers were in the five digits, so the rheumatologist I was referred to took it pretty seriously, especially since I had CNS involvement. I can't imagine how frutrating it must be when you don't have labratory proof of lupus since that's all most doctors seem to accept.

Most of the statistics here say it takes a lupus patient 7 years on average to get a correct diagnosis. I suspect it's the same in the U.K.

val
10-30-2006, 01:35 PM
Hi Mary,
thanks for repling. Yes if I hadn't gone to London--100 miles away I would never have been diagnosed. my ANA has stayed negative but Dr Graham hughes diagnosed me with SLE, APS, Sjogrens, Poly Arthritis and Fibromyalgia. I have also had Costochondritis and Plantar Fascitis added.
I have so many other problems, Hypothyrodism, High Cholesterol, High Blood Pressure. I have blood in my wee. A permanantly high ESR.
I had an EEG which showed circulation changes which helped Dr Hughes diagnose APS.I also have had low Platelets andlow Potassium.
I have Bursitis in both hips and Osteo Arthritis in knees and shoulders--a legacy of 33 years of nursing, most of which was during the days of no moving and handling rules--we lifted folk in and out of bed.
I know I am ill my Gp recognises it. The NHS pensioned me offw ith my illness. Now I just get on with things as Consultants just don't take me seriously.
I am sure you understand how I feel. Been ill For 5 years--only 2 to go lol
Val

KTJ
10-31-2006, 06:50 AM
Hi Val,

Sorry you are having such a difficult time of it! I am a fellow brit living in Oxford.

The law is changing in Britain so your GP will be able to refer to any hospital in the country. There are some good Lupus services around apart from London there is a new centre in Southampton hospital. They are very friendly and I took myself to A+E there when I had my last really bad flare and actually got some treatment rather than just being patted on the head and being told there there!!!! Also my sister has RA and got herself refered to Bath rhuematoligical hospital. It took some fighting but it has made the world of difference to her as it has meant good treament from the best doctors, not only drugs but other therapies and good tests too. They do all rhuemy diseases.

I know all of those are down south and so a bit of a distance for you but there might be some closer to you.

Do you belong to Lupus UK? They might be able to support and advise you?

My aunt is in the same boat you are. Her GP doesnt believe Lupus is real, but my other aunt and my Nan were both diagnosed with SLE so she knew she had it. She has now been going to St Thomas's for years. Its just a shame we all have to play such silly games to get the care and treatment we need!!!

Take Care
KTJ

val
10-31-2006, 09:16 AM
hi KTJ
I started a support group with lupus uk. We had big problems and we became independant. I fund raise for St Thomas Hospital now. I know the money goes to research then.
I see Rheumatologist, Haematologist and St Thomas Lupus trust yearly. They are all in January LOL. I might get some results.
My son lives near Wantage so I come down to see him. Lovely countryside.
Val