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Discussion Starter #1
Hi there.

My name is Karol and I am a Jersey girl. I am 42 years old, married to a great guy and have one son who just turned 17 and is finishing up his Junior year in High School.

I have one really big dog named Buzz and 3 Birds....1 Congo African Grey named Sedrick, 1 Timneh African Grey named Bella and my little Cockatiel Buddy. My Congo Grey who will be 21 years old in July curses better then I do and my Timneh, who just turned 1 is really starting to talk. It is only a matter of time before she starts cursing too.:rotfl: :rotfl: :rotfl:

My story is long and somewhat complicated but I will give you all the readers digest version of it in a nutshell.

I was diagnosed with Multiple Sclerosis in 2005 after going blind in my right eye. I have never accepted the dx of MS and still don't. People, my friends, Neurologist and family all say I am in denial but truth be told I am not. I have said all along that I know there is something autoimmune going on but in my heart I know it is not MS.

I took the Interferon drugs that I had to inject into my body via a needle to slow the MS progression yet I never felt better and nothing slowed down so I basically boycotted all meds and live happily in denial. I figured some day someone would figure it out.

Fast forward to 2 weeks ago.....I went to my family doctor and explained to him that I was feeling pretty ill and have been for a long time. Long story short he did some blood work to test for ANA, ANA Reflex Panel and other things and low and behold here came the answer.

My test results pointed strongly towards Lupus and so do my symptoms. I have not received a official diagnosis of Lupus yet but my doctor is certain that the diagnosis is coming.

I am going to 2 Rheumatologists (excuse the spelling) within the next 2 weeks. I set it up this way so I could have 2 opinions on this. I am guessing that the specialists will want to do more blood work and that is fine.

After seeing the family doctor and having him tell me, "You have Lupus" I decided to go Google it and get educated about it. There was a list of 11 things that are criteria for Lupus and I had 9 of them.

I no longer work and I am out on SSD. I want my old life back but I am a realist and know that will never happen so I make Lemonade with the Lemons I have been given.

I look forward to being a active part of this group and getting to know you all. I am certain that many folks here will provide much needed support and knowledge as time goes on. I am reeling yet I just want answers and somehow Multiple Sclerosis just never seemed right to me.

If I can answer any more questions feel free to ask. I am not shy so ask away.:p :p :p
 

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Hello Karol and welcome,

It sounds like you have everything well under control on the doctor side of things and that you have a good GP. Some people do get an MS diagnosis and then find that it is actually lupus. Lupus is the great imitator and can be a very hard disease to diagnose.

If it does turn out to be lupus do please come out of that denial and take the disease modifying meds that can make a huge difference to life. You can then indulge in denial as much as you want but without putting yourself at risk :lol: we all do it to some extent or the other.

bye for now,
Katharine
 

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Discussion Starter #3
Hi Katharine,

Thanks for the welcome. I am not sure as this is relatively new to me if the drugs for Lupus are the same as they use to treat MS.

I will be open minded if I do in fact get a dx of Lupus as it would make more sense to me then MS did.

I have been reading here and notice a lot of people take a drug called Plaqunel...(spelling???) so I am guessing it is a popular Lupus drug.

I can not take Steriods or anything that has Aspirin in it so I am not sure what my choices would be.

I will cross that bridge when I get to it.:worried: :worried: :worried:
 

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Hi Karol

Plaquenil is the baseline medication given to most people with lupus and some other auto-immune diseases. Originally an anti-malarial it is a disease moifying drug that reduces the frequency and severity of flares. On the whole it is very well tolerated and has very few, if any, side effects. Its "down" side is that it takes a few months to start working. There are also other anti-malarials used in some cases if plaquenil doesn't suit or to improve other symptoms.

Other commonmy used drugs include immunosuppressants which basically stop the immune system working quite so hard and can be very beneficial for people with more serious maifestations of the disease or organ involvement.

Prednisolone is also used for some people mainly to try and control flares before other drugs can work but for some people they may stay on a maintenance dose for one reason or other. It is not, however, the "main" treatment and if docs can avoid steroid use they will.

Aspirin is used by some people who have a blood clotting disorder as well as lupus but it is just one choice among many.

Basically treatment for lupus can be pretty varied and has to be tailored to suit the patient as it is a very individual disease. This tailoring can take some time and can be frustrating but leads to the best results with the fewest side effects. The most important drug of choice is a disease modifying one like plaquenil as that is what will stop the disease progressing or being so severe in its manifestations.

Katharine
 

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Hahaha, I don't think anyone knows enough about this disease but I'm of a curious nature and have learnt a lot over the years (My Mum has dermtomyositis and lupus) and through this site.

I have lupus with a myositis overlap, possible APS (I take aspirin preventatively but have never had a real clotting incident) and hashimotos (underactive thyroid) so yep, we learn but actually I'm not all that good at the techy bits. There are far better than me around!! :)

Katharine
 

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Welcome to the site! I think it's great to have 2 appointments so you get that second opinion right away. It's also a good idea to learn about this disease that is suspected so that when you go in you can have an educated discussion with your doctor about relevant symptoms, and the bloodwork used to diagnose lupus.

Of particular interest for you will be to be tested for anti-phospholipis antibides, which are found in APS (anti-phospholipid syndrome) which is also known as Hughes Syndrome after the doctor that discovered it. Many people with these antibodies, that make the blood clot easier, are misdiagnosed as having MS. Treatment is with a variety of blood thinners.

MRI scans of the brain in particular are often similar between APS patients and MS patients. But APS can be treated quite successfully with blood thinners, even reversing damage caused in some cases.

It is possible to have both MS and lupus too - unfortunately.

Take care and let us know how it goes at those upcoming appointments!
 

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Discussion Starter #8
Thanks Maja.

Apparently the Rheumy doctor I am seeing on the 27th is extremely good and specializes in Lupus, etc...

I am confident that more blood work will be done and something will come of it, be it Lupus or APS or whatever...:eek: :eek: :eek:

I KNOW I have something Autoimmune but I never swallowed the MS diagnosis. I think it is wrong and they are missing something.

I was also dx with Fibromyalgia and CFS years ago. Who really knows what the heck I have but I think it is all coming to a head now.

I will let you know how it turns out and thanks for your reply to this post.
 

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I did go to the Rheumatologist Tuesday and he feels it probably is Lupus.

I posted about this appointment in Not Diagnosed Yet.

I go back June 4th for the results to the 23 tubes of blood they took from me.:eek::eek::eek:
 

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Hi Karol,

Welcome to the site. I think it is great that you are taking your health into your own hands. It is important that you feel comfortable with your diagnosis.

Initially the doctors felt I had MS. That turned out not to be the case. The progression of my symptoms is so classic for MS that every year the doctors revisit the theory that I have both.

Let us know what the Rheumatologist's say.

Take care,
Lazylegs
 

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Discussion Starter #11
lazylegs;509659 said:
Hi Karol,

Welcome to the site. I think it is great that you are taking your health into your own hands. It is important that you feel comfortable with your diagnosis.

Initially the doctors felt I had MS. That turned out not to be the case. The progression of my symptoms is so classic for MS that every year the doctors revisit the theory that I have both.

Let us know what the Rheumatologist's say.

Take care,
Lazylegs
Oh My God I just love your user name mainly because I always tell my husband that my legs are lazy and just do not want to work.

Thank you so much for the warm welcome to this site.

I will keep you posted. BTW the Rheumatologist still thinks MS can be a part of this picture along with Lupus.................are ya kidding me here?

This is just a bad dream right? Someone pinch me and I will wake up!:mad:
 

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Hi karol,

A big welcome to the site... Well they say we have be our own advocate to our own health... Good for you... Things are not like what they used to be anymore...
I hope both your appointments go well for you...And that you get results right away so that you can be put on the right meds...
Keep us informed and Welcome again..

Love Penny
 

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Discussion Starter #13
Hi PennyP and thank you for the warm welcome.

I just posted about some abnormal blood work results I got back and am looking for input.

I am sure when I go see the Rheumy doctor tomorrow a clearer picture will be painted for me.

Thanks again for the welcome to the board.

This is a great group of people.:wink2::wink2::wink2:
 
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