Update on my stepdad again

[sparks19]

Well after both of his surgeries my step dad is still run down and feeling crappy. he's been insisting for a while that he wanted to be tested for Lupus but his Doctor kept insisting that wasn't it and wouldn't do the tests. So finally he called the surgeon he went to for his first surgery and made an appt with her.

He brought in this little form with him that they found online that basically has a check list for lupus symptoms and he has all but maybe ONE that was on the list but said that his doctor kept telling him it couldn't be lupus.

So after she looked at the list and talked to him for a bit she agreed that it REALLY sounded like it could be lupus and she called his doctor and told him that he absolutely needed to be tested.

Well the tests came back today... he has Lupus. Now he has to get into a specialist in London (an hour away) so they can try to figure out what kind of lupus it is and how they are going to treat it.

It's so nice to FINALLY know and now hopefully he can get on the right medication and get to feeling half normal again after all this time.

[pomtzu]

Well hopefully he's now on the right track to feeling better.

It's a pretty sad state of affairs when the patient has to tell the doctor what the ailment is. Is this typical in the Canadian healthcare system? :confused::eek:

[sparks19]

I don't know if it's a canadian healthcare thing or just a doctors don't like to be told anything thing. I know when I was younger my mom took me to the docs and wanted to have me tested for mono. He didn't even lay a finger on me or anything and insisted it wasn't that and that I was depressed and could turn suicidal :O my mom got a second opinion... MONO.

[Catty1]

There are boneheaded idiots in every profession, in every country. A friend of mine has a doc that just WON'T listen. She's off to find another one (I wish her luck!)

[Grace]

There are boneheaded idiots in every profession, in every country. A friend of mine has a doc that just WON'T listen. She's off to find another one (I wish her luck!)

I totally agree. There are people in all professions, in many countries, who cannot grasp that other options, treatments, whatever are possible.

They can't see beyond the end of their nose - an old, but true expression.

[Laura's Babies]

It's a pretty sad state of affairs when the patient has to tell the doctor what the ailment is. Is this typical in the Canadian healthcare system?

This happens everywhere! I know a lady that died from breast cancer because even with the history of every female in her family dying from cancer and she had it several times in her life herself, he neglected to schedule her for a mammogram for THREE years! By the time a nurse found it, it was to late..

In another state, a guy I work with, his Mom died because of a toxic mix of drugs that were treating 2 diseases she DID NOT HAVE! This man, her son, had went to the Mayo clinic's web sight and researched what they were treating her for and asked the doctor if they had ran test "X" & test "Y" to confirm those diseases... They had not but did before that day ended, she did not have those diseases. The next day he met the doctor at the door with the print outs on those two drug that said they were toxic together and he stopped those drugs but it was to late... She died a few days later..

YET, you tell a doctor you looked something up on the internet and they tell you you can't believe what you read on the web.. My response to those doctors is THEY force us to go look it up because they fail to treat us and make us well so we either look for the information ourselves or just quietly die!

Thank God your step Dad had the good sense to go look it up for himself!

[sparks19]

Wellllllll... it was actually my mom that did the searching around and he teased her for it LOL but if she hadn't he wouldn't know what he has now :)

yeah doctors (anyone really) just don't like to be told how to do their job even though sometimes it's nessecary.

[Catty1]

So - what treatments are open to him? I hope there is something naturopathic as well as meds so he can feel a lot better.

It's about time - he and your mom have been thru enough! Prayers for Feelin' Good Soon!:)

[wombat2u2004]

I very nearly lost my first wife to Lupus in the early 1980's. She was being treated by a doctor who initially thought she had appendicitis, so out came the appendix, then she got ill again, and all the same symptoms reappeared, and on and on it went. The doctor even told me that she had some kind of weird arthritis because of one of the symptoms (being very sore joints). When she finally got so ill, and had to be admitted to hospital, the doctor told me that she had luekemia, but wasn't real sure because he was still testing her for a very rare disease that is carried by bats. That's when I thought it was all my fault, because I was a caver (but she wasn't), and naturally every time I went caving I would come into contact with bats.

She got so thin in hospital, her weight dropped really dramatically, she was almost skin and bone. Her eyes were terrible, they were jet black and looked like little pools of ink, she lost most of her hair, and I knew she was dying.

Thr Matron of the hospital called me aside one day and did something she really wasn't supposed to, she asked me to contact another doctor who she knew was good, at what she believed was an immunilogical disorder, and to discharge the current treating doctor. I did what she asked, the new doctor came in, checked out all the test results, and within a day had diagnosed her with Lupus.
He put her on a drug called ENDOXAN, she responded almost immediately, and could even eat (before, she couldn't keep any food down at all), within weeks she had put on weight, and her hair started growing back, all the symptoms disappeared etc etc.
When she was finally released from hospital she was given PREDNISONE to take, because PREDNISONE (it treats lots of conditions) actually balances out the immune system, and the Lupus is held in check.
She has to take Prednisone for the rest of her life...she stops taking it, she dies...period !!!!

We had it explained to us what Lupus is. In the normal body, when you get certain diseases like measles or chicken pox, stuff like that, you body's immune system recognises the disease as something foreign and produces anti-bodies to combat those diseases. Those anti-bodies are then always produced, so therefore you don't get that particular disease again.
With Lupus, the inmmune system goes awry, and messes up, it recognises a vital organ as alien and anti-bodies are produced accordingly to attack that particular organ or organs in your body.....in most cases it's the joints, your liver or your kidneys....that's the common kind, there are other kinds that are worse.
So your body is actually producing little soldiers to kill yourself.

Just another little bit of interesting information here about Lupus.
It was first discovered in Asian women who lived in western countries.
(My first wife was Asian, and had only been in-country about 10 years).
In fact it was almost exclusively confined to Asian women. Since then, it has started to affect other races, slowly but surely the scale has risen with other races being diagnosed with that disease, so that now, anyone can get it.

The name ???? Lupus = Latin for "Wolf".
One of the symptoms is a rash on each cheek of your face....kinda makes one look wolfish.

Who knows what causes these diseases.....but I thank God for that Matron at the hospital, if not for her, I would have lost my wife within a few weeks, thats how far gone she was.
Wom

[Laura's Babies]

I had a friend that had it many years ago but it took forever for them to figure out what she had and she darn near died several times before they finally figured out what she had. It took them something like 3 years to figure it out. Why is it so hard for the doctors to recognize?

[sparks19]

Yeah he needs to go to a specialist so they can figure out what "kind" of lupus it is and then they can figure out treatment for it.

When we all started discussing the idea that it might be lupus it just made a lot of sense and he's slowly been showing signs over the past few years. First was the joint pain. He always complained about how his shoulders would get so bad he couldn't lift his arm. He just attributed it to all the painting and maintenance work he was doing but even with arthritis you don't get as bad as he was and arthritis can get pretty bad.

Then he got sick and has been battling that for over a year. Then the rash and reaction to the sun started and I think that's when my mom really started looking at lupus.

They say it's a disease that mostly affects women but seems to be affecting more and more men.

[Catherinedana]

I don't know if it's a canadian healthcare thing or just a doctors don't like to be told anything thing. I know when I was younger my mom took me to the docs and wanted to have me tested for mono. He didn't even lay a finger on me or anything and insisted it wasn't that and that I was depressed and could turn suicidal :O my mom got a second opinion... MONO.

Something very similar happened to me when I was in Junior High (more years ago than I'd like to admit) and when they finally discovered that it actually was mono, I had to stay home from school for about 3 weeks because my spleen was inflammed and they didn't want it to rupture. So it's not just Canadian healthcare, it's doctors all over. I have no faith in them. Now I have a lot of fatigue and general achiness and it was found by one doctor that was open to the idea that I have the active Epstein-Barr virus in my system. This is the possible culprit of fibrymalgia and chronic fatigue. I don't see that dr. anymore for various reasons and have not had another dr. that will take this condition seriously. It can sometimes be very disruptive to my life but I find that if I keep myself from extremely stressful situations (and that is actually easier than I thought! I had to learn not to create drama where the was none!) I usually feel pretty good although I'm almost always tired. I hate to say this, but male doctors will not listen at all to any fatigue or general "unwellness" complaints. I was checked for Lupus by a male dr. and since I didn't have it, he wrote the whole thing off. Nevermind that I have joint aches or have to sleep up to 12 hours in a day to recoup about once or twice a month.

We all have to take charge of ourselves and if you have a suspicion about an ailment you are facing, have them do the tests. Insist! You have nothing to lose. Then find ways to treat yourself like diet and homeopathy. Making music a big part of my life again actually helps a lot. I'm NEVER tired or achy when I'm singing!

Hope your stepdad gets the help he needs to feel as well as he can. I also suggest that you find out as much about the disease as you can so that you can assist in his treatment and make suggestions both to the doctor and to your dad about things that might work for him.

Sending love,
Cathy

[Grace]

I had a friend that had it many years ago but it took forever for them to figure out what she had and she darn near died several times before they finally figured out what she had. It took them something like 3 years to figure it out. Why is it so hard for the doctors to recognize?

A lot depends upon the doctor one sees. General Practice, Internist, Rheumatologist - this is the type one wants for Lupus BTW. Does one live in a very rural area, or near a University Medical Center?

The other thing is that symptoms of any specific disease process can vary from patient to patient.

[pomtzu]

Let me clarify - I didn't mean all of Canadian healthcare. It just seems I've read and heard so much about about that one in particular, that it's what came to mind, especially reading in different threads, about what Tanya's step dad has gone thru, and Tanya herself too.

I'm sure there's many, many doctors like that everywhere. I've been fortunate enough to never have encountered one. My primary care doc is quite the opposite. It seems he tests for absolutely anything that might be even remotely possible. I always thought he was a little test happy, and I have even not undergone some he has ordered. But then I'm rather glad that he is that way. Better safe than sorry. :)

[Medusa]

Well, at least now he knows what he's dealing with and things can progress from there. I do hope that all moves along quickly now.

[wombat2u2004]

I had a friend that had it many years ago but it took forever for them to figure out what she had and she darn near died several times before they finally figured out what she had. It took them something like 3 years to figure it out. Why is it so hard for the doctors to recognize?

Because the symptoms are so varied and different in most patients.
Ohhhhhh....it took a long while to figure out what my ex wife had....I think she exhibited symptoms for some 3 or 4 years before she was diagnosed.
But the rash on the face, which to doctors is a dead giveaway of the disease, doesn't appear on a lot of people.....my ex never had the rash, mainly she had VERY sore joints...all joints were affected, from toes all the way up to the fingers. Some days, she couldn't pick up a pen to write......so the doctors thought she had arthritis for a very long time. And all the time this was happening, her very own anti-bodies were munching away at her kidneys and liver......no one knew.

[wombat2u2004]

Yeah he needs to go to a specialist so they can figure out what "kind" of lupus it is and then they can figure out treatment for it.

When we all started discussing the idea that it might be lupus it just made a lot of sense and he's slowly been showing signs over the past few years. First was the joint pain. He always complained about how his shoulders would get so bad he couldn't lift his arm. He just attributed it to all the painting and maintenance work he was doing but even with arthritis you don't get as bad as he was and arthritis can get pretty bad.

Then he got sick and has been battling that for over a year. Then the rash and reaction to the sun started and I think that's when my mom really started looking at lupus.

They say it's a disease that mostly affects women but seems to be affecting more and more men.

Yes, they are all typical symptoms, especially the joints, thats what starts usually first, and it lasts a long time before your body starts feeling ill.
My ex never got the rash, nor was she exhibiting any symptoms when in the sun......but who knows, it was a long time ago now....perhaps a day in the sun would give her joint pain a day or two later....it's hard to put 2 and 2 together really.
And yeah.....it was mostly women, as I said, it started with Asian women who lived in western countries.......there were no cases in Asia at all.
Now men are getting it......it MUST be something in the environment that causes it.

[wombat2u2004]

Yeah he needs to go to a specialist so they can figure out what "kind" of lupus it is and then they can figure out treatment for it.

When we all started discussing the idea that it might be lupus it just made a lot of sense and he's slowly been showing signs over the past few years. First was the joint pain. He always complained about how his shoulders would get so bad he couldn't lift his arm. He just attributed it to all the painting and maintenance work he was doing but even with arthritis you don't get as bad as he was and arthritis can get pretty bad.

Then he got sick and has been battling that for over a year. Then the rash and reaction to the sun started and I think that's when my mom really started looking at lupus.

They say it's a disease that mostly affects women but seems to be affecting more and more men.


He needs to see an Immunologist Sparksy, because it is an immune disorder.

[sparks19]

He needs to see an Immunologist Sparksy, because it is an immune disorder.

that might be who or what he's going to see. Either way it's a specialist that deals with lupus and things of the like. Now it's just a question on how soon he can get in to see them.

All the info is being relayed to me through my mom as I'm 9 hours away. As of yesterday he hadn't been in contact with the specialist yet. he just found out yesterday.

hopefully they have some updates for me tonight

[wombat2u2004]

Fair enuf. The sooner he gets in the better I guess.

[Grace]

Tanya, lupus is an auto-immune disease. There can be more than one member of a family with an auto-immune problem - not necessarily the same one, though.

For example, my daughter-in-law has MS and her father has Crohns. There are many, many others - like Type 1 Diabetes, Rheumatoid Arthritis and Grave's disease. And some poor people end up with 2 all by themselves :(

[sparks19]

Yeah I think his mother had lupus... or maybe it was his aunt. I can't remember now.