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Hello and thank you for being here, :)

Last Monday I was diagnosed by a rheumatologist with Mild Lupus.

I am 52. My Son is 23. While I was at my doctor he was at our GP and they found protein in his urine. He also has hashimoto's thyroid, (for six years)neutropenia(low white cells) cycling as an infant. He was producing Antibodies that attacked his neutrophils, that stopped when he was a year old. He has joint pain, fatigue, headaches and dry mouth. He will also be seeing my rheumatologist June 5. His follow up appt with GP is June 3rd. They ordered more blood work Thursday.

Do you think there is a chance my Son has lupus also? Isnt that strange..isnt this all just too much. He just cant have Lupus. He has so much living to do.
He doesnt have any pain in his back, no kidney symptoms. The sun is not his friend..he burns and can not stand the heat.

As for me and its funny how it doesn't really seem to matter at this point. If any of you are a parent you know that our children are .......what matters.

I am a little confused about myself because I was diagnosed so quickly.

I had a positive ANA before I saw him, that is why I went. My hands and feet are slightly swollen and painful. Not horrible pain, but can be uncomfortable.
I get night sweats and such bad chills. One thing that really does bother me is that when I am sitting up on my laptop I have pain, full feeling pain, under my breast. I have to lay flat for it to leave, and at times even that can make it worse. I get sick after using the Tanning booth...never did before. But I do now. I cant really eat because I get such discomfort ....always feel so full. Also short of breath. And have a hard time swallowing..not always. Also I get this horrible pain in my chest...it is the worse pain ever. If I drink some water...a lot...it goes away. I had white cells in my urine and always have some sort of infection off and on. Nothing serious. Nodules on a few nuckles and stiff hands and feet.
I do have thyroid.. etc. My sister passed away seven years about because of her neutropenia. So there is some autoimmune issues in the family.

My hands do hurt..and this winter I could not go outside because of the pain from the cold. No rashes......no mouth sores.

So...in a nutshell..how did he diagnosed me so quickly. Monday I will get the results from all the blood work and x rays. I wonder if any of you could comment on being diagnosed so quickly on symptoms and one positive ANA. Without all my other blood work back. And a doctor I know...said that there is no such thing as Mild Lupus, he is retired and might not be up to speed.

My family really doesnt think I have lupus nor do they think my son does.
They all think I am being a crazy mother...and I am tired because I do so much. But, I dont feel good. And I know my Son doesnt either. He said Mom I think I need to see a doctor because something is wrong with me. That is why I made the appt with our GP. I am so scared for my Son. :(

Thank you and I am sorry this is so long
Always
Myer
 

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Hi and welcome Myer, dont you think your son should ask for a blood test too, My daughter did, as she told her gp about me, as she had lots of symtoms, thank the lord she as not got lupus, but im sure they would do a simple blood test for him

sorry i cannot say why your Dr dx you quick, maybe he thought it was enough, i know they go on symtoms as well as bloods, but im No Dr...........

hope your doing ok though Lin xxxxxxxxx
 

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Hello and welcome :)

It sounds as if you are doing everything you can right now to clear things up both for yourself and your son.

Usually a lupus diagnosis is not given lightly, so I'm sure that the rheumatologist had good reason to diagnose you. Maybe you are simply so used to feeling like you do that you no longer consider it as abnormal. I got that way too. I was constantly being told that I was simply doing too much or that I was stressed. In the end you kind of get used to it and stop complaining, as no-one is listening anyway. It's a bad habit to get into as I tend to then ignore more serious things and it has had a huge effect on my quality of life.

"Mild" lupus simply means that there is no organ involvement (except often the skin). It is a very misleading term as for many people there is nothing mild about the symptoms they have.

If your son does have something auto-immune going on, he is going to get earlier treatment than you have done and there is every chance that he will be able to go back to leading a perfectly normal life (maybe with some small adjustments) when he has the right medication combination.

UV light is extremely dangerous for anyone with lupus and should be avoided at all costs. It causes inflamation which can significantly worsen symptoms, provoke flares and increase disease activity. Top rheumatologists recommend wearing high factor sun screen even indoors and even on "cloudy" days. I am also very sun sensitive and think that my feeling a lot worse recently is probably just because of all the extra light around (even with Belgium's unstable weather).

I hope that helps a little, don't hesitate to ask questions and we'll try to help a much as we can,

bye for now,
Katharine
 

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Thank You

Thank you for responding to my questions. My Son will be getting follow up blood work on June 9th when he sees my Doctor.
I have been having joint problems for a few years etc.
Wondering if anyone has muscle cramps, feet mostly. Also I am bloated and have so much discomfort below my breast on both sides , the whole area. I guess we all know something is wrong, its just we push ourselves.
Once I know how my son is I will get with the program.
Thank you Again
I do hope all of you stay well as possible. I will be back on Monday Ha. Gosh, who knew? :)
Hugs
Tina
 

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Welcome Myer
You must be feeling rather overcome and worried about your son too.
I think a lot of people are diagnosed quite quickly just we tend to hear on the forum from those who are having difficulties. It is often hard for the family and friends to accept diagnosis- somehow they seem to think that by denying it they are helping. Perhaps you can have a family conference or send them all a letter explaining things.

I am glad you found your way here - there's a wealth of advice on all aspects of life with lupus. Just ask about anything that's a problem.

Bye for now!
Clare
 

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Welcome to the site!

Part of the chest pain you describe sounds like pericarditis. This is inflammation around the heart's sack. If you get that again be sure to report it to your rheumatologist as prednisone can quickly improve the pain in many cases.

What medications have you been placed on for the lupus? I was a quick diagnosis too, based on ANA and symptoms. My GP tested for ANA within a week or 2 of getting some pretty distressing symptoms for me. I quickly went from thinking I had some kind of strange flu like thing to adjusting to life with a chronic illness. It's not an easy transition - I hope we can help you through it!

I hope you have had your screening colonoscopy done, to make sure your bloating and such is not being caused by any problems in that realm! If you haven't, be sure to have your GP schedule it. Many here have gastroparesis, which is essentially a slow moving digestive tract. It can cause bloating much like you describe and is treatable.

Good luck to your son, but I can certainly understand your concern. Please let us know how things turn out for him!
 

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Welcome to the board, Tina.:)

It must be so worry some for you and your son.:hug: It is a roller coaster ride of emotions, that is for sure.

I was diagnised quickly too. It was on my symptoms and my blood work. My labs were so high there wasn't a doubt that I had it.

I know how you feel about your son. As mothers we want only the very best of our kids. We would rather take all the hurt and have them be ok.

We don't get all the same symptoms. My brother has SLE like I do. We are alike in the pain, fatigue and aches but we don't have everything alike.

Sending you big hugs for you and your son.:grouphug2:

Take care and if you have any questions we are here to help you with our experiences.

:posy:
Lyn
 

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Hi Tina and :welcome:

This is a great site with a wealth of information and there is always someone that can relate to what you are going through.

Getting a diagnosis can be overwhelming and it's a lot to take in. I really feel for you as you have the added worry of your son which can actually contribute to your own health. Many people spend years trying to get a diagnosis so you have been fortunate to get diagnosed so quickly.

As Katharine said 'mild lupus' normally means no organ involvement but my rheumatologist says 'lupus is lupus is lupus'. It just affects people in different ways and to different degrees.

As for your family, I understand your frustration as I had a similar predicament. I put together an A4 factsheet of all the key points about lupus for them to read - alot of the info you can get from this site. I also found that telling them little bits here and there is more productive as they absorb the information better rather than spouting a whole load of info in one go.

I hope this helps and you get some answers soon for you and your son.

Hugz, :hug:

Pam xxx
 

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Hi Tina and welcome.

I am brand new here myself and this group of people.........well they are awesome.

I have not been dx with Lupus yet. I go back June 4th for a Yes you have it or No you don't.

I was dx with MS in 2005 and being dx with any chronic disease is a pretty tough pill to swallow.

As far as family and friends and what they think you have, ignore them please. I have family members who have not even acknowledged my dx of MS and they wont either.

Some people choose to live in denial..........everyone handles things differently. You know your body best and if you do not feel well then press forward and get all of the answers you need.

As far as your son, hopefully after some blood work it will be that he does not have Lupus.

Keep us posted and again, welcome.:wink2::wink2::wink2:
 
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