[Determined1]

hello everyone and thank you all for being here.

I was told to find a support group, but there isn't any in southern illinois. Considering I can't drive very far, I am usually stuck here at the pc. My name is Nathalie and like I mentioned, I live in Southern Illinois. I am happily married and have 4 bio children and 3 steps. There are 8 grand babies and we have a pretty active life. Until I get a flare that is, then life stops as I know it.

I was dx in 01 with Lupus, moved from the area and when I found a new dr they didn't believe me. They have treated me and diagnosed me with everything from colon cancer to migraines to MS. I since have returned and found my old GP that diagnosed me and she has taken me back on. She has Lupus herself and is very up to date on things.

But, since this flare, my organs have been affected tremendously so she is running many other tests thinking it maybe something else. I am confused, and emotional roller coaster, scared and sick of being sick....

The last ekg I received the other day showed that I had rt atrium enlargement. I get short of breath, tightness around the upper chest area, pain into my back, up my neck. I also have been wheezing quite a bit. I do smoke so they contribute some fo it to this. But, it gets me through my days and I am not ready to give it up. I wasn't even having chest pains at the time, so now I am worried as to what is going on when I am having them. My kidneys are affected along with my cns. This is what caused drs to test me for MS. I had an abnormal MRI twice in 1 year, showing plaque. I have heard that Lupus can do the same as MS. My legs and arms hurt so bad, I can't hardly walk at times and I used to be an avid dancer. So this kills me.

I am trying to stay positive about things, but still get down and out. I am looking forward to being here and thankful for you all. I hope you don't mind all the questions I may have in the beginning. I hope I can help others too. Thanks for the patience and understanding.... Hugs to all Nathalie

 

[cath]

Hi Nathalie,

Welcome to the forum.

I'm glad you found us. We have people from all ove the world here including many from the USA.

I'm sorry you are so unwell at the moment. What medications are you on? Do you see a rheumatologist at all, or only your GP?

Looking forward to getting to know you,

X C X

 

[Maia]

Welcome to the site but sorry to hear of your worsening symptoms that brought you here.

I'm glad you are back to the doctor that you trust and knows about lupus since she has it herself. You may want to seek out a rheumatologist too if your disease is becoming more troublesome in recent years/months. Those set of symptoms in women definitely warrant additional testing since they can be due to many different things, but checking for heart problems would top my list to rule out especially given the smoking. My grandmother recently had a heart attack and her only symptoms were nausea and some left arm pain... the symptoms in women are much different than the prototypical chest pain and profuse sweating that men get.

I hope some day soon you'll be able to give up the smoking. Smoking reduces the effectiveness of many lupus medications, including the basic drug Plaquenil. It's a very difficult thing to do but a good friend of mine did it after 30+ years of 1-2 packs a day. I had worried she'd never be able to do it but she has been smoke free for 1.5 years now!

Are you a Saluki then? My brother went to SIU!

Welcome and take care and hope you get things sorted soon and find a way to feel better.

 

[lazylegs]

Hi Nathalie,

Welcome. The site is a great place to come for support. Everybody here is very friendly and more than willing to help if they can. I am glad you found us.

Sorry to hear that your symptoms have escalated. I hope with further testing you get some answers soon.

I am one of those that has MS type symptoms. Treating the Lupus aggressively has helped keep those symptoms from progressing. Things like dancing are still out of the question but I can get around much better than in the past.

Take care,
Lazylegs