Rhuematic Fever for over a year, worried about my heart. hands going numb

[Kms123]

I have had rhuematic fever for about 1 1/2 years.  After spending last year with a rhuematologist who ran lots of tests, put me on steroids and Penn, she informed me there is nothing else she can do for me at this point and she doesn't know why I am not getting better.

I am still on the Pennicylin, but have had a major sore throat for about a month.  I tested neg for strept. I have had the rash on and off pretty bad where is appears and dissapears in the same day and in different places but is almost always somewhere.  The joint pain is there, it still is migrating, but tolerable.

Lately, I feel tired, short of breath, and dizzy.  Every night I wake up with numbness in my arms and hands.  It started with my fingers and is now a lot worse.  The strange part is that if I'm sleeping on my side, it is NOT the arm or hand I am laying on.  This makes me think it is circulation and possibly something to do with my heart or rhuematic fever.  I'm pretty scared.

I bought a stethascope, but I don't know what I'm listening for.

Anyway, it's driving me crazy because one minute I feel like I am dying and no one can help me.  Then other times I feel like there it will go away in time wrong and I need to stop worrying so much.

I really could use some good advice.  I'm still trying to pay off medical bills from last year so I'm afraid to start that whole routine over too, especially when they didn't help me. (I want a refund - ha ha)

Anyway,
Thanks

[CCF-M.D.-MJM]

Hello,

I am sorry to hear about your struggles.  Rheumatic fever can be a frustrating condition.  Hearing your history I cannot tell if your symptoms are sequelae of rheumatic fever or not.  Rheumatic fever can cause a carditis or heart inflammation but the timeline you present sounds a little late for that.  It is way to early to have the valvular heart disease secondary to rheumatic fever.  If you really want an answer, I would take pictures of this rash that keeps popping up.  I am not sure what major medical centers you live near, but I would consider getting a second opinion at one and seeing one of the more senior cardiologists or infectous disease doctors.  It is important to see someone older because younger physicians have very little experience with the early consequences of rheumatic fever -- we just don't see it much any more.

I hope this answers your questions.  Good luck and thanks for posting.

[woodruff]

After 1 1/2 years, you must have what is called "chronic rheumatic fever."  From what I have read, this is quite rare.  I gather that cardiac complications can occur with this condition, so you should definitely be under the care of a cardiologist, as well as a rheumatologist.  If you don't have a cardio, you should find one and make an appointment.

By the way, forget about using a stethoscope.  Understanding what you hear is something that takes doctors a long time to learn well.  For ordinary people, it's just scary, and doesn't provide any useful information.

[Kms123]

Thank you so much for taking the time to answer my question.  I believe my next step will be to find a cardiologist to work with.

I am sure the rash is the rhuematic fever rash.  I have taken pictures and shared it with doctors.  They all agree, and I've seen identical photos on informational websites.

My problems began in June of 2005.  How long before it can cause valve problems?  I had an echo and an ekg in Nov'05 and things looked fine.

Do you know of symptoms I should keep an eye out for?  Those tests are pretty expensive to just be giving me piece of mind.  Is once a year enough to get checked? -Sorry this is probably what I should be asking the doctor.

Your responses were very helpful to me.  I will keep you posted.

Thanks a million.
Kat

[anacyde]

Hi there.  Sorry to hear about all that you're going through.  I've done a lot of research on strep, scarlet fever, rheumatic fever and subsequent heart valve damage.  My 3 year old got strep four times before she even turned two - a child who otherwise never even got a cold.  The fourth time, she progressed into the rash and was diagnosed with scarlet fever.  I got very worried, as each time it gets worse.  Our doctor said if she gets it again, the tonsils are coming out.

I'm concerned about her heart valves too.  From what I gather though, heart valve damage doesn't become apparent until years down the road, so it's something in the back of my mind.  If she gets any symptoms, she's going straight to a cardiologist.

Hope you find some relief and answers soon.

[Kms123]

I had no idea how damaging strept was.  My son who is now 8 had strept on and off for about 3 years before having his tonsils out.  Funny part is he never had a sore throat.  He would end up hospitalized from vomiting, and dehydration. He would also get a skin rash that the doctor diagnosed as excema sp?.  Sorry about the spelling of all the medical terms. He never had it any other time except when he had strept. It came to the point that I knew he had strept before the doctors did.  He never tested positive for the rapid.  Always 24 or 48 hours later.

Anyway, I've got my eye on him now too.

When I had my third son a couple of years ago, I had tested positive for strept B.  He ingested some fluid during delivery, but I was on preventative antibiotics.

He turned out to be the carrier when we had the entire family tested when I was diagnosed with rheumatic fever.  He was never sick or showed symptoms.

They say it's not related to my youngest, but I had actually had strept a few times from my other son according to the blood work they did on me.

My doctor said I was the 3rd person is less than a year she's diagnosed with rheumatic fever and to tell everyone I know if they get a sore throat and fever to get tested asap.

Kind of scary!  I guess I'm the unlucky one that can't shake it though.  From what I've read in the past it was treated with bed rest.  No one's suggested that for me yet.  Although, with 3 kids, a full time real estate career, horses, a husband who's self employed, etc, etc, it's probably not a reality anyway.

Thanks for giving me a place to share.

I am really curious to find out where I can learn more about chronic rheumatic fever, and if anyone knows really good doctors (infectious disease or cardiologist) in the WI area.

I love your comments and feedback.  The more I can learn, the better.

THANK ALL OF YOU.

[Gaspipe]

Hi Depending upon your geographic location...  have you been tested for Lyme Disease?

[Kms123]

Yes, I was tested for lymes disease and everything else.  The lab results were conclusive that it is rheumatic fever.  The only tests that came back okay last year were the ones on my heart.

I understand that it can me many years before carditis appears, however, my concern is that the rheumatic fever is chronic and that if it doesn't go away it can affect my heart sooner.  Now that I am having these dizzy spells, & numbness in my hands and now feet, shortness of breath, etc...I am convinced I should see a cardiologist to be safe.

Thanks
Kat

[anacyde]

Group B Strep isn't the same as the strep that causes the sore throat, scarlet and rheumatic fevers and heart valve problems, if that puts your mind at ease.  I was Group B positive with my second pregnancy and got the antibiotics too.  I asked my obstetrician if it was related to the frequent strep infections my husband and daughter had, and he said no, that it was entirely different.

Hope that helps :)

[specialk1019]

A related discussion, just diagnosed rhuematic fever was started.