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Finally getting help for RA diagnosis..


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Old 10-01-2007, 11:51 PM   #1
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Finally getting help for RA diagnosis..

Hi everyone. I think I posted awhile back in another thread about being diagnosed with RA and having no way to see a Rheumatologist. Well, the new doctor I'm seeing at a family health clinic is referring me to a rheumy at the local University Hospital (University of Louisville) and it will cost no more than going to the clinic, which is one with the slide-scale fee setup. She is also ordering X-Rays for my hands. The joints in my fingers are very sore and stiff for most of the day, and a little swollen. I've even noticed that my right pinky finger is starting to curl upward a little bit at the end. My other fingers are also starting to look a little bit crooked when I look at them at a flat angle, so this is getting a little scary Other joints in my body hurt as well, including my ankles, wrists, elbows and knees. I even have soreness in my ribs close to my sternum.

I'm so relieved because I thought I would end up not having this treated and walk around in pain all the time. So I just wanted to get all that off my chest. My prayers are finally being answered.
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Old 10-02-2007, 02:34 AM   #2
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Re: Finally getting help for RA diagnosis..

I'm so happy for you storm moon.
it's terrible to have to suffer in pain and have no answers.
at first you think it's all in your head, well I did with mine anyway.
I'm not diagnosed with RA or if I even have it. I ache all over in different places different days. it's horrible and painful.
I can't even do the minimalist of things without suffering some sort of pain.
the older I'm getting, the worst it's getting.
I never suffered with pain in my finger joints till just a few weeks ago and boy does that hurt to have to close your hand to hold a coffee cup in the mornings. I hurt on the back skull of my head, the lower part of my skull and can't figure out what the heck is going on with that.
I've had the rib pain too. I don't get pain in my knees but in my wrists sometimes. it comes and goes out of no where. I have to wrap them tight so they dont' hurt when i hold something heavy like a plate or pot.
it lasts only a day or so and then goes away.
strange isn't it?
I have been told I have osteoarthritis of the spine and neck and osteoporosis as well. I don't know if these two things would effect the other bones or joints in my body where i"m suffering pain.
I asked my dr to perform a test for RA and he said the one he did two years ago came back negative. so he's sending me to a rheumatologist again.
is it possible for a test to be negative one year and then a yr or two later have it show up?
I'm confused.
I am very happy for you that someone is able to help you. especially if one has lack of insurance to help pay for the visits and treatment.
I was out of work for seven months and suffered with medical problems during that period. it can be very frightening and I realized how important it is to have medical insurance.
I am now working again but have a host of medical problems again and don't want to lose my job.
how does one survive with such problems and yet keep a job?

good luck with your new visit.
keep us informed of your visit if you remember.

sincerely,
L

 
Old 10-02-2007, 07:07 AM   #3
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Re: Finally getting help for RA diagnosis..

Storm moon, am vey pleased you are now able to have some kind of treatment, it is awful when our health comes down to money isnt it, in England we dont pay for health/medical probs/treatment as such but due to so many people on waiting lists, the people who can afford to pay, over take those who are less fortunate!

L
Your syptoms certainly sound like those associated with RA. I was dx a few months back and since this so much has changed. Im now unable to drive, peel veg, run and many more. At present i am on steroids but soon to start plaquenil and hope things will begin to go back to normal! I think the results can change so i would definately go back to dr/rheumatologist and seek further guidance and help! Early intervention is so very important to help slow down the disease. Take care.

wenXXX.

 
Old 10-03-2007, 04:54 AM   #4
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Re: Finally getting help for RA diagnosis..

thank you for your reply wen.
I dont' lose tons of hair like they say people do with RA.
do you lose your hair just by running your hand thru it?
the rheumotolgist did that when he examed me. the dr didn't seem to spend much time with me and he went more by reading the results of my blood work that my pcp dr performed and I brought the results with me.

a certain level was slightly high and that's why my pcp referred me to him. but the RA doc said he's wondering why my pcp thought I had RA because the test was neg.for RA.
this is the very same RA dr that my primary dr is again referring me to.
I don't know if I should even bother wasting my time?

aren't RA drs supposed to do extensive testing besides test for the factor if you have RA?

I didn't realize that RA can cause a host of aches and pains all thru out the body like this. I also didn't know that if you go for treatment early enough that they can stop the RA from progressing.

I need to do some research on RA. which I have to admit I haven't.

thanks again for your help.

Linda

 
Old 10-03-2007, 05:23 PM   #5
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Re: Finally getting help for RA diagnosis..

Hi, I just wanted to tell you how my rhumey checked me. My first visit we talked about everything that hurts and all of my complaints. He then examed all the joints I told him hurt- even my toe joints. We talked more about treatments and such, but he said he couldn't do anything just then until he took some more tests. He did give me a perscripion for Ketoprofen 75mg - which is a little stronger than aleve. He also had me take a TB test. So he ordered a bunch of blood work done and a hole lot of xrays taken of the problemed areas I told him about. Which came to 45 xrays. I went and had the blood work and xrays done as soon as I left his office. My second visit which was a week and a half later, he exsamed my joints again and we went over the test. Thats when he comfirmed I had RA and started the treatment. From what I understand RA doesn't always show up in the blood and some things like hepititis will mimic RA. My Dr tested me for hepititis in my blood work also. So when you go back... insist on more tests.
Good luck to you... and let us know how things go.

 
Old 10-04-2007, 09:56 AM   #6
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Re: Finally getting help for RA diagnosis..

Thanks David for your explantion.
that dr definetly did not do that extent of testing and I wish he had.
I now have to delay the process of getting a check up by him because I just lost my job yesterday. they let me go due to my being absent so much due to my chronic illnesses.
they didn't know i had problems when I was hired because I did not tell them.
I now have to wait months now because any new job you work for makes you wait from 3 months to six months before you qualifty for medical.
I guess I just have to suffer the mean time. I've done it before and I guess I have no choice unless I apply for temporary medical assistance.
they really give you hard time and it seems like medicaid screens people so they DON'T get accepted.
it's horrible. I've put enough taxes and money into medicaid benefits that I feel I'm due to get help now. it's not like I'd be taking advantage of the system. but I have no definitive diagnoses other than osteoporois and osteoarthritis and haven't been checked since I was first diagnosed to see if more damage has been done. I feel like it has.
but without documents and proof to give to medicaid, they may not want to help me. because anyone can claim they hurt so much and feel horrible so much but without proof, how can you proove it?
alot of people lie to them and they're the ones that ruin it for people like myself who really do need help.
I'm sorry if I'm bumming you out.
I just worried even more now.

thanks again for your help.

Linda

 
Old 10-05-2007, 01:43 AM   #7
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Re: Finally getting help for RA diagnosis..

Hi Linda
I am sorry for the rough time you are having, that's the last thing you needed loosing your job. I can't believe you dont receive any help and it's all down to medical insurances/money, what a rubbish system, what happened to caring for people! When you do see your doctor perhaps he could do blood tests looking at the inflamation levels which indicates how active the athritis is. Also a dexa scan would show your bone density which is important as you have oestioporosis. I do hope things work out for you in the very near future. Takecare.
wenXXX.

Last edited by wen10; 10-05-2007 at 01:45 AM.

 
Old 10-05-2007, 07:09 AM   #8
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Re: Finally getting help for RA diagnosis..

Hi Linda,
Sorry to hear you lost your job. That stinks ! I know all to well how our medical system here works. Something really has to be done about it. I never told my job I just got diagnosed with RA. And I don't intend too. The position I'm in is very competitive. And if they thought I couldn't do as much, they would try and move me to another location or find a way to get rid of me. I work in retail, as a department manager, at a national chain - 500 stores.

I also know what you mean about people taking advantage of our system. We have alot of dead beats here sucking the system dry and ruining it for those who really need it. In front of my store there are 4 handycap parking spaces, and some of the people I see parking there really makes me mad. I just want to yell at them and ask them " What the hell is wrong with you that you have to park there ?" The other day I watched this middle aged women get out of a large SUV, (one of the ones that sit up high) wearing high heals and a mini skirt. She went from store to store shopping, and back and forth to her SUV with packages. My store is in like a strip mall with other large national retailers so there's alot of space in between them, but she had no problem walking at a fast pace, shopping franticly. I see this type of thing so often, it just really make me mad.

Is there maybe a free clinic near you, you could go to ? Also some hospitals offer some care to the indigent. I know it's awful to have to go that way, but maybe you could get some treatment that way. - Just a thought.

Best of luck to you Linda, and keep us informed.

 
Old 10-05-2007, 07:27 AM   #9
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Re: Finally getting help for RA diagnosis..

thanks Wen for your compassion.
I did ask my primary dr when I saw him a few weeks ago if I should get another dexa scan.
But being I just had one alittle over a year ago and being that I wasn't on any medication for it since I was first diagnosed with it, he wrote me a new script for and said to wait to have another dexa scan till I've been on the medication for a while.
I thought he should've ordered another follow up dexa scan too.
I still am not able to take the boniva he prescribed for me because even with pharmacy coverge, they charged me $30 for ONE pill. yes, one pill is equavilant to a one month supply because with this medication, you only take it once a month. the pharmaceutical companies wouldn't make any profit on the medicine if they charged a cheaper price being you only take it once a month.
God only knows how much MORE it will be now that I won't have pharmacy coverage because of the loss of my job.
so I still can't take any medicine to help stop the bone loss that is going on.
I wonder if it really works anyway?
all I know is I'm now waking up in the night with painful bones in my legs, my feet, and my arms and fingers are all getting tingly and numb again because they feel like they go to sleep when I'm laying down.
god forbid if I fall asleep on my back. it feels my spine will break in half and I'll become stuck in one position.
what the heck is going on here I ask myself?
I'm wondering if I got bite by a tick and that maybe i have Lymes disease going on? I've had it before, but when I was in my late 20's.
I had different symtoms and they weren't bone pain like this.
my neck feels like it's going to get stuck in certain positons too when I turn it. it happens sporadically thru out the day.
I never really had a good follow up with any dr since this diagnosis and it's time it be done.
I wouldn't have known to go to a rheumy dr if I hadn't come to this specific site and saw other people suffering with similar pains.
so this site has helped me immensly.
thanks to people like you.
thank you again,
sincerely,
Linda

 
Old 10-05-2007, 07:43 AM   #10
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Re: Finally getting help for RA diagnosis..

Hey david,
we were posting at the same time so I missed your post after wens.
not until I went back to my yahoo did I find there was another reply for me.

You should be protected under some law that if they find out you have RA, they can't touch you.
it would be discrimination. your new diagnosis has not efffected your work limits yet, right? also, I found out by doing some research that a company by law has to make it more adaptable to a person that has a handicap.
so if anything, they would have to help you!
only if you requested to be put to a different dept. could they do that to you.
If you were sitting doing desk work, for example, they'd have to order a special chair or what every ergonomic things they have to offer for people with disablities.
I'm not saying you have a disablity, yet, but you never know how RA will turn out years from now when you get older.
what are your symtoms? how would it effect your job?
you sound like a trooper to me david and not even this new diagnosis is going to stop you from your high performance level.
you take pride in what you do and it shows. you have good work ethics.
I'm sure they won't do anything to you because you sound like the type of employee that employers LOVE to have work for them.
hang in there David.

oh, and I too get so angry at people for taking the handicap spots if they aren't handicapped.
did that woman in the SUV have a thing to hang in her window stating she is handicapped? or did she just park there for her convience?
if you see people doing that illegaly, you can go and tell them to move their car, or better yet, you should go and alert the security gaurd that works there, if you have one. Better not to be involved with people who could become angry with you and start a fight.

some people can be so insenstivive and careless to people around them. they only thing of themselves.
It's people like her that need to be punished by the system, not us who really need the help.

you dont' have to tell your employer anything about your RA if you don't want to. but I would suggest that when the time comes, and if you're in pain and need to be accomidated to help your pain, by all means speak up.


best wishes,
linda

 
Old 01-10-2008, 10:54 PM   #11
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Re: Finally getting help for RA diagnosis..

I'm at the home stretch now. My rheumatologist appointment is this coming Tuesday at 9:45 AM. It took awhile to get the appointment, though. About 2 months. Since the referral, my fingers hurt a bit worse in the mornings now. The joints have even gotten a bit bigger in the middle. I'm kind of looking forward to it yet nervous. X-Rays back in October were normal and I couldn't figure out why with the swelling. Also, my wrists absolutely kill me at times. Hopefully they'll tell me exactly what is wrong and I am believing it's RA.
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Old 01-11-2008, 08:56 AM   #12
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Re: Finally getting help for RA diagnosis..

I wish you the best outcome on tuesday Moon Storm.
I am learning patience myself since all my illnesses started a few years ago.
I really hope they are able to give you a diagnosis soon, this way you can on a treatment plan so you're not in so much pain.
there's nothing worst than pain grinding at you daily. I often wonder if there's something they can do to halt the progression of arthritis's. I know they treat the pain, but can they actually halt the progression from it getting worst?
If the pain is increasing daily and weekly at such a fast pace, what's it going to be for us a year from now or years later when we're even older?

I understand there are many many different forms of arthritis. I was doing research on this the other day and it took me a few hours because of the list of things that are arthritic. I first did a thing where I typed in a first symptom, then a 2nd and on till they finally give you a list of what it can possibly be and I was astounded at all the things relating to arthritic to the different parts of our body and the organs it can effect.
it's simply amazing.
It seems to me the dr's never do extensive research on me and they only do the minimal work to find out what's wrong. like a simple x-ray and that's all they do or a bone density test. but never any of the type of testing that was suggested that I read.
I would think it would be difficult to find these diseases that I found.
I can see why so many people can be misdiagnosed and it all depends on the doctors and if you get a good one who's willling to really take the time to do the research on their patient.
it's scary to think that with the severe pain I'm feeling all over my body and head that it can only be a simple thing like osteoarthritis and osteoporosis and fibro,, because what I'm feeling is only getting worst and worst.
I FEEL Like there's more going on but the dr. just doesnt' do any further testing to find out what else is going on.
do I ask them to do more testing? is it wrong for the patient to ask their doctor this? Is it being pompous to ask?
do you feel the same way I do about what's going on with your body and the way the doctors respond?

sorry for going on in length with so many words, but what I really meant to say to you is good luck this coming tuesday. I'm really happy for you that it's finally here.
let us know the outcome. if you have time that is.

sincerely,
Linda

 
Old 01-15-2008, 12:50 PM   #13
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Re: Finally getting help for RA diagnosis..

I think it's very crucial to question doctors when they diagnose you with something, and definitely ask for tests if you suspect something else. If they don't listen, then I'd find one who does. Most just want to get you out of the office and make room for other patients due to their workload, I dunno.

Anyhow, I just returned from my rheummy visit. He went over what has been going on over the last few months, and pretty much diagnosed me with RA. I'm going to have bloodwork done for any liver problems and have the arthritis panel done again. When I last had it was in July. He did say that a high RA factor can be present in healthy people and asked if I was sick last year, but I don't think I was, just feeling tired all the time. So if it's changed we'll see. For now he's putting me on Plaquenil and Sulfasalazine for the inflammation. Thursday I'm seeing my general doctor and having the bloodwork done there. I'm so glad this isn't going to cost a whole lot either. My prescriptions were $7 each, and the visit was $15. With no insurance, that is a bargain.
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Old 01-16-2008, 07:21 AM   #14
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Re: Finally getting help for RA diagnosis..

I'm glad you finally got into your appointment with the rheumy dr storm moon.
I didn't know that a person can have a postive titer and not have RA?

how on earth did you manage to get your meds so cheap without insurance?

what state do you live in?

I'm in NY state and the prices here are ridiculous.

One pill cost me $30. it's taken only once a month and you're only given one pill. it's prescribed for osteoporosis. Boniva is the name. I couldn't afford to take it therefore stopped.

the t.v. is advertising some place on the internet to go to so you can help others in the country who are uninsured. they need as much people as they can get for support. but with my darn fog brain, I didn't write the name down and thought it was something else and now I cant' find the site.

I feel like my brain is turning into mush. it's difficult to carry on discussions with others verbally because of embarrasment and writting too.
it's very annoying and I don't know what to do about it.

let us know if how you feel after taking your med's. I'm very curious to see how they work for you.

where do you suffer with pain the most?
when did it first strike you? how long have you been seeing doctors before you were referred to a rheumy dr?

all this is new to me and I'm anxious too to find out what on earth is making my body detoriate at such a fast pace.
I JUST recieved my medicaid card in the mail yesterday so I'm offically covered now medical wise and can finally seek help.
Now I can begin the process of seeing all the drs' that I needed to see and hopefully be able to get an MRI or bone scan of my body.

I wish you the best,

Linda

 
Old 01-17-2008, 07:50 PM   #15
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Re: Finally getting help for RA diagnosis..

The university here has a local clinic where you can see specialists for fraction of the cost depending on your income. I'm not working now, so I basically get it at the lowest level where I think most visits and labs are covered, and I pay a percentage. It's really a miracle, IMO and most places don't even let you see specialists for that cost. I'm in Louisville, KY so you can probably guess the university lol There are only 3 rheumatologists in the state that see uninsured patients, so they are super busy. I really want to see if I can get eye exams up there too because I am in need of one badly.

Most of the pain started in my fingers on both hands, the middle joints would hurt pretty bad in the morning and lessen throughout the day. I think now it's going into my shoulders cause they are killing me tonight.

I do hope you'll get the help you need now that you're covered on medicaid. good luck to you and best wishes

Nikki
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