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View Full Version : First rheum apt Friday, need to prepare! Desp for treatment, so I'll!



Lindylou
06-20-2011, 03:41 PM
Hi everyone!
I'm new to this site, big hello! Iv learned lots reading thru all the posts and it's heartwarming to see how supportive you all are to each other, and how open many of you are about how you are feeling. Iv been on a roller coaster ride of awful symptoms and now emotions as the symptoms worsen and have affected every sphere of my life. It began in September mildly but has been declining rapidly since march and iv changed GP as my dr who knew me since birth said it was in my head. This was so hurtful, and I spent a couple of weeks believing him, but the swollen painful hands affect my work so bad ( midwife) I couldn't ignore it, so changed GP. The knees, ankles, hips, elbows, toes, shoulders are all affected. Had shingles, another two infections, fingernail fell off. My ribcage hurts terrible, my upper abdomen feels very swollen and tender,( but not agony) as if something is stuck under the right breast, like a tennis ball. My liver bloods have been abnormal occasionally with no explanation. my feet and hands have reduced sensation, always cold, painfull and purple, migraine, night shaking, enlarged
heart, palpitations and raised bp. Breathlessness, loss of appetite and weight loss, nose sore, hair loss. Iv very bad cognitive issues and can't remember things. Things are becoming acutely bad at work, there are many things I'm struggling to do, so I saw a private rheum as my nhs apt was taking while ( it took 13 weeks) he reckoned possible raynaulds/sle. I had bloods which showed raised ESR normal CRP, mildly anaemic ( but I had bilirubin in urine at this point, ? Haemolysis)
Anyway I'm going on too long, I phoned for the important ones, the ana, and the receptionist told me the rheumatoid was neg but didn't clarify on the ana, even though I asked three times so I gave up. She kept saying, it's fine, it's normal. Unless it reallis negative, in which case I'm really worried, because everything I read says the ana
doesn't matter for diagnosis, but when I read posts, I see folks who are really sick
getting short shrift from rheumys, even with a positive ana, and I'm worried I'm going
to be shown the door, with no help at all.
My job and life are going down the toilet, unless I start getting some ability back. I'm so counting on a good appointment. Please give me your thoughts folks, on my symptoms and how I can best prepare for my apt. I really want to leave with medication to help me. I know I'm not going to leave with a diagnosis, but medication
would be a great start, and would show my boss I'm on the uphill road!

Thanks in advance for all advce

Lindylou xxxx

Peridot20_Gem
06-20-2011, 04:48 PM
Hi Lindylou,

A nice warm welcome to our family of WHL and nice to have you with us, yes we're all open to one another and full support is given in which way possible...as we're the suffers not the doctor's.

Take no notice of that comment it's all in your head so many have had that throwed at them besides myself, it's the Doctor's way of fobbing you off so they don't have to deal with the issue it really annoys me.

Well i can't say you have raynauds until you see the rheumo but i'd say 80% with the cold hands and those feelings plus you get pain with it, i'd say you have Raynauds but we're not doctor's on here to say so positively and for a start off your anemia wants sorting out incase that drops to low and there is a strong possibility of SLE which i have and a good many member's it affects your joints organs and can give off some severe pain.

They may be saying your ANA is negative but so many of us have stated this before if you do have Lupus it loves stress and depression it kicks your symptoms into hurting you more and it is terrible for fluctuating your bloods in other words you may have something but it can make the readings say negative, it took 6mths for my anaemia to show it's true colours.

Just don't let them mess you about in this state and pain your in...write down your symptoms your having and also your main points you need to put across and also about your ANA test, as alot of us when we get to see them your mind can fire blanks off, so i do suggest this strongly and other's member's will besides.

I'm adding to links below for Raynauds and SLE for you to read incase it helps with what your suffering.


www.raynauds.org.uk/raynauds/raynauds

www.medicinenet.com › ... › arthritis az list › systemic lupus index

Hugs Terry xxx

Dance in the Rain
06-20-2011, 06:35 PM
LindyLou,
I don't have much to add since i am new, and undiagnosed and waiting for my dr appt as well. I am trying to prepare and determined to get help. These boards are an awesome place to start, welcome and good luck,
Cheers,
D

steve.b
06-20-2011, 06:49 PM
welcome linylou,
may i suggest you aproach the private rhuemy, and ask for a printout of your blood test.
take these to your new appointment.

also take the time to write down, in point form what your symptoms are.
when the rhuemy starts asking questions, it gets hard to remember everything.

lovedbyHim
06-20-2011, 09:32 PM
Hi lindylou, welcome to a great family who with bless your socks off! I have raynauds, bilirubin in urine, pain in chest often, cognitive issues that made me believe I would lose my job, joint pain, and negative ANA at times. U have SLE, Hoshimotos, fibromyalgia, etc.

I always get my bloodwork results as they are apt to overlook things and I call them on it. I also can see when my kidneys are losing protein. I have taken charge of my disease and treatment now, because so many docs have blamed my symptoms on menopause and depression.

Keep strong and don't let the docs discourage you from having a proper diagnosis. It's takes a strong woman to be a midwife! If you can do that you can get to the bottom of these symptoms. Bless you in your search for the truth.

Gizmo
06-20-2011, 09:42 PM
Hi Lindylou,
You have obviously been doing some reading on this site, so you already know what a wonderful group of people this is. I hope you will stay around, whether you get your diagnosis or not. Terry and Steve have already given you great pointers. After reading all the posts about encounters (good and bad) with doctors, I think there is only so much you can do if the doctor is a jerk. I have my degree in nursing, and when I go to the doctor, I do my best to talk with the doc on a professional level. You might want to appeal to him as a fellow medical professional and emphasize how your symptoms have affected your work. Be specific and compare what you were like a year ago to what you are like now. It seems like sometimes doctors react badly when people go in and say that they think they have lupus. I wonder if it is more effective to say that you are looking for help to feel better and so you can continue to work at your career. You can tell him what the other rheumy said (or better yet bring him the records), but I have found that going in with an open mind is sometimes the best course. Of course you can steer things in the right direction with your list of symptoms and questions, but keep in mind that there are LOTS of autoimmune diseases.

Have you actually been worked up for the enlarged heart and other cardiac symptoms? If not, maybe that would be helpful to do.

Lindylou
06-21-2011, 02:59 PM
Hi all,
Thanks so much for the very warm welcome! It's so good to know there is somewhere I can come for help, without being seen as a moany!
Terry, thanks for the links, iv had a look and the pics of raynaulds look like my hands, though mine are much less severe, and I have a good pic of mine like this which I caught which I hope may help. I've been keeping the diary you suggested for a month or so too, I hope it helps, have so much pinned on this apt, I will stress my pain levels too.
Hi Steve,
There's a letter from the private rheumy in my GP notes, and he suggested all the antibody bloods be done via GP to save me, so the results will all be in my notes, along
with his opinion for my nhs appointment. I met with my GP after he had received the letter and he told me everything pointed to lupus and to prepare myself for this diagnosis, but I am expecting to be huckeled out with nothing iv heard so many sick folk being turned away with no help! I'm hoping for an experienced rheum for whom the ana is not everything. I have six or seven of the other criteria. Thanx for your
advice and the welcome!
Hi lovedbyhim, (I love your name!), I was strong and determined but it's wearing so thing and I almost left my job today, feeling so incompetent and inadequate. The cognitive problems are quite acute, and my colleagues thought I was behaving quite out of character they said. I don't feel like myself. Im sure everyones talking about me and something awfuls going to happen. It's a bizarre feeling, and I cried in corners in
work all day. Thank you for your prayers, I will be counting on them for help on Friday.x
Hi gizmo, it is a wonderful group and I am fortunate to have found this site. I think your perspective is great, I will talk to the doctor from the point of view of needing to get to the bottom of this to continue with my job. My difficulties in that area are immense and are causing me great stress, I will try and get the doc to empathise, it's a lady, how would she like to be in my state, unable to practise after all that training and hard work. I won't put it like that but I'll try and get her to see my desperation. I plan to go in with a brief list, give my history of symptoms and wait and see what she says, I'll say nothing. I'll only question if I get fobbed off.
I have been worked up for the enlarged heart, not had results yet, my bp keeps getting higher! So don't know about that.
Gizmo, have you managed to continue practicing nursing? does the confusion and swelling go down with medicine? I worry about my work future if this is my illness.

Thanks again everyone!

Lindylouxxxxx

Peridot20_Gem
06-21-2011, 03:14 PM
Hi Lindylou,

It's lovely to have you with us and deeply showing your concerns of illness and we're try and help as much as we can and any imput you can give goes such a long way also.

It sounds like you've got everything covered for you visit but if any bloods do come back negative it is most likely what i mentioned the Lupus playing with your blood if your symptoms are connceted to it, there's so many member's had negatives and had to go on with bloods being took till somethings showed...Lupus is a very testing Disease but i wish you all the very best and please keep we updated.

Hugzzzzzzz to you Terry xxxx

Gizmo
06-21-2011, 04:14 PM
I was strong and determined but it's wearing so thing and I almost left my job today, feeling so incompetent and inadequate. The cognitive problems are quite acute, and my colleagues thought I was behaving quite out of character they said. I don't feel like myself. Im sure everyones talking about me and something awfuls going to happen. It's a bizarre feeling, and I cried in corners in work all day.

Gizmo, have you managed to continue practicing nursing? does the confusion and swelling go down with medicine? I worry about my work future if this is my illness

Are you feeling paranoid today about your coworkers or were they really talking about you? Paranoia can be a CNS symptom, so be aware that your perceptions may be altered. If they are actually telling you that your behavior is different, maybe you can talk privately with one or two (whom you trust) and ask them about specific changes they have seen. I would be a good listener, but resist the urge to confide in them - your words might be used against you later on.

Being in healthcare, you are treading on much thinner ice when it comes to needing to work vs protecting your patients from possible error from brain fog or other CNS symptoms. That pressure has to be incredible and my heart goes out to you. I don't know what country you are in, but you should probably look at your company's policy manual to see what your rights are, before something happens. That would be good info to have when you see the rheumy, too. If she agrees that your work situation needs to be addressed, knowing what documentation you need will be really important.

I've spent about 10 minutes trying to figure out how to say this and just can't get it right, so I'm just spitting it out: in the U.S. a licensed healthcare provider could be in legal trouble if they realized that they were putting patients at risk, but continued to practice, and a patient got injured as a result. I don't know what your laws are, or how affected your cognitive abilities are - but it's something I'm sure you have thought about. In the U.S., if you doctor says you shouldn't be delivering babies (for example) your employer would have to find you a position which uses your abilities, but doesn't require you to do things that puts your health or your patient's health at risk. Maybe you could be a trainer for other midwives, just do routine prenatal care, etc...

I haven't worked as a nurse in over 20 years, but I have been looking for work in the medical field since January. I have thought about taking a "refresher course" so I can return to work as an RN, but I am afraid that my mental fuzziness and tremor will put my patients at risk. I am VERY concerned that I don't have the physical ability to work a full day, or perform the physical work of nursing. My meds do help with some symptoms ( for lupus I am on an immunosuppressant, plaquinil, quinacrine and an experimental drug). My stomach won't tolerate anti-inflammatories, but those usually give people some relief from the swelling and joint pain. As for the mental fog: prednisone works best for me in low doses. In higher doses I just get too anxious. Please let us know how things go on Friday. It sounds like you have a good plan, and will have your records and notes to yourself so you don't forget anything.

magistramarla
06-21-2011, 05:02 PM
Hi Lindylou,
Welcome to WHL. I was a midwife's assistant when we lived in Oklahoma 25 years ago, so I know how tough your job can be. Luckily for me, I did the job long before I started having any AI symptoms. I was teaching high school Latin when I was dx'd and had to give it up in 2009 when the stresses of teaching got to be too much for me.
You have a good handle on how to work with your docs. Keep researching, and keep pushing for answers to your questions.
Be aware that autoimmune issues can come in pairs or even groups. I have Mixed Connective Tissue Disease, which means that I have a mixture of several AI diseases.
Many of us here at WHL have two or more AI diseases.
Good luck, and keep us informed.
Hugs,
Marla

tgal
06-21-2011, 05:31 PM
Hi Lindylou. I just wanted to stop in and welcome you to our lovely family. Please make yourself at home and I look forward to getting to know you

Lindylou
06-22-2011, 11:42 PM
Hi all,
Thanx for you replies, iv been working late so couldn't come on last nite. My apt is today! I got mixed up! No shock there, least I never missed it after a 13 wk wait! Scotland NHS! And I work in it, not a perk to be had.
Gizmo, many developments at my work over the last 2 days after my meltdown which I told you all about, and my fear was all related to exactly what you were discussing, errors, doing harm, not being fit to practise etc. So changes have been made, I'll post later after work, I'm heading to work not, and my apt this afternoon, wish me luck!
Lindylouxxxxx

steve.b
06-22-2011, 11:58 PM
i will be thinking of you.
hope the appointment goes well!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Lindylou
06-23-2011, 10:39 AM
Hey everyone!

Firstly, thanx for your kind thoughts Steve. It really feels amazing to have this worldwide virtual shoulder, im so glad your here for me to write to just now for your thoughts.
I had my apt, and the doc was kind and lovely. She took a thorough history and asked lots of questions re, ulcers, photosensitivity, my joints, and my abilities and how they have declined. I spoke a bit about my job and how it is affected and how it worried me, but it was mainly me answering her questions. Shethen examined me, and agreed my hands are very swollen, asked lots q"s bout how this feels and palpated and examined me all over.

She then said it certainly sounds autoimmune, I then told her briefly about thee Private Rheumy apt and she didnt have the letters from that ( which I thought she did have) and she asked me what he thought. I told her he suspected SLE
and she said she thought the same and she would do bloods. However, I told her id had them done and they were negative, so she got them on the system and they were indeed neg, five minutes later she starts telling me I may have
fibromyalgia. She said I cant have SLE with a neg ANA. Forgive me guys if I am wrong, but I have read that some people can be seronegative, and have heard yourselves say that the bloods are fickle. Im confused that she would
come to a strong clinical suspicion ( which another rheumy and some of my bloods, eg anaemic, raised esr) supports, and then dismiss it
on the basis of the ANA. I read a short bit about the differences between lupus and fibro, and I dont have widespread
muscle aches as my main complaint, or majorly disrupted sleep, i get tired but again its not a major complaint. I have a friend with fibro and shes very unwell but in a different way from me. She also admits i have inflamed joints and my
hands border on deformed at present.
I asked her what the treatment for fibromyalgia was and pain management and physio is basically the crux of it at this
dept, which is all I have been doing for the three months trying desperately to help myself keep a job whilst waiting formy appointment. Iv also seen a chiropodist, and changed my diet, taken vitamins etc. Iv nothing against fibromyalgia, Im just not sure its me.

I feel if iv been basically doing what they do for fibro and iv worsened, im just going to keep getting worse and this fills me with dread if she decides on this as my diagnosis.
On the plus side, she did give me a kenalog im steroid injection, and said it will be interesting to see if it helps? i got hands and feet xrayed. And she redid all bloods.
Iv to go back in 2 weeks which I know is good too.
What do you all think about this guys? Its not that i was an illness, but if I have a CTD of some kind, id like the medication to make me better, and not to keep declining. Am I being really ungrateful to my doctor?

thanks in advance

lindylouxxxx

Lindylou
06-23-2011, 10:44 AM
Hi Mari,
Sorry, I meant to thank you for the lovely warm welcome too!

Lindylouxxx

tgal
06-23-2011, 10:59 AM
When did you get the shot and did it help?

Lindylou
06-23-2011, 11:08 AM
Hi Mari,
Im only a few hours back from the apt so its not had a chance to kick in yet this one was IM. However, I got a cortisone shot into my knee on 9th May from the private rheumy and it worked like a dream. The effects lasted 5 weeks then i twisted my leg so its as bad as ever, I forgot to tell her I had had that shot and it helped, I really should have? Iv to phone her next week and let her know if it helped?

lindylouxxx

tgal
06-23-2011, 11:16 AM
LOL OK I am sure I should know this but I have been basically in bed since Sat. I am going to assume my brain issues are from being sick. I am not sure what IM is but I thought by your post that she gave you a steroid shot in the rear. There is no need to call the doc and tell them about the last shot. The nurses won't give it to him and/or he won't look at it anyway. They will just put it in the file. There is a very different reaction when steroids are given directly into the joint/muscle for pain and when it is given as an overall treatment.

Let us know how it goes but I will warn you... you may not get much sleep tonight LOL

Lindylou
06-23-2011, 12:29 PM
Hi Mari,
Aww, sorry to hear you are so unwell! I hope you start to feel better soon? And the rest has helped?
You are spot on, I got it in the rear! I figured I wouldnt bothr them, I must write these things down for the nxt apt!
I'll anticipate a restless night.!
Thanks for the info!
Lindylouxxxx

Peridot20_Gem
06-23-2011, 04:58 PM
Hi Lindylou,

Thanks so much for getting back to us and letting we know how your appointment went and your Rheumo sounds a nice person to discuss your issues with.
Lindylou the bloods do mess about but here's a link refering to ANA being negative, as 95% of people with a positive ANA have SLE. www.labtestsonline.org/understanding/analytes/ana/test.html

You've just stated your pains not so bad as your friends but it is according to how it's developed in the body if you do have fibro, your friends could be abit more advanced. Well i do hope your specialist is able to find out what is basically causing your problems and your bloods show better results plus the x-rays help them in many ways showing the bones and what the joints are like for a better diagnosis.

Well for a start off i think it's brill how your rheumo as been with you and some are terrible mine included and having you back so quick.

Here's info on the kenalog injection you had, it's a corticosteriod used for the treatment of inflammation

www.ehow.co.uk › Healthcare - corticosteriod

Hugs Terry xxx

Gizmo
06-23-2011, 05:19 PM
Lindylou - IMHO you are probably OK with your doctor. She listened to you, and she gave you a trial of steroids, and she wants you to call her back next week and see her in two weeks. That's more than a lot of people on this site have ever gotten! The official, textbook criteria for diagnosis of SLE says that 4 of 11 symptoms/conditions have to be present to make the diagnosis. Only 3 of those criteria are laboratory tests. Going back to the definition that physicians are theoretically supposed to follow - a positive ANA is NOT necessary to make the diagnosis.

This is from the Mayo Clinic site. In the U.S. The Mayo Clinic is kind of the gold standard for medicine:http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=tests-and-diagnosis

American College of Rheumatology criteria for a lupus diagnosis
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have 4 of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:

Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
Scaly rash, called a discoid rash, which appears as raised, scaly patches
Sun-related rash, which appears after exposure to sunlight
Mouth sores, which are usually painless
Joint pain and swelling that occurs in two or more joints
Swelling of the linings around the lungs or the heart
Kidney disease
A neurological disorder, such as seizures or psychosis
Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test

Now the tricky part is asking your rheumy about the criteria without making her defensive...

Gizmo
06-23-2011, 05:21 PM
LOL OK I am sure I should know this but I have been basically in bed since Sat. I am going to assume my brain issues are from being sick. I am not sure what IM is but I thought by your post that she gave you a steroid shot in the rear. There is no need to call the doc and tell them about the last shot. The nurses won't give it to him and/or he won't look at it anyway. They will just put it in the file. There is a very different reaction when steroids are given directly into the joint/muscle for pain and when it is given as an overall treatment.

Let us know how it goes but I will warn you... you may not get much sleep tonight LOL


Mari, I hope you are feeling better soon. I wondered why you were so quiet this week. Thanks for letting us know that you are still with us ;o)

tgal
06-23-2011, 05:41 PM
Hi Lindylou,

Thanks so much for getting back to us and letting we know how your appointment went and your Rheumo sounds a nice person to discuss your issues with.
Lindylou the bloods do mess about but here's a link refering to ANA being negative, as 95% of people with a positive ANA have SLE. www.labtestsonline.org/understanding/analytes/ana/test.html

You've just stated your pains not so bad as your friends but it is according to how it's developed in the body if you do have fibro, your friends could be abit more advanced. Well i do hope your specialist is able to find out what is basically causing your problems and your bloods show better results plus the x-rays help them in many ways showing the bones and what the joints are like for a better diagnosis.

Well for a start off i think it's brill how your rheumo as been with you and some are terrible mine included and having you back so quick.

Here's info on the kenalog injection you had, it's a corticosteriod used for the treatment of inflammation

www.ehow.co.uk Healthcare - corticosteriod

Hugs Terry xxx

I just need to correct something here. 95% of people with a positive ANA do not have Lupus but 95% of Lupus patients have a positive ANA (I don't personally believe the 95% of lupus patients have a positive ANA thing simply because so many Lupus patients go undiagnosed). Many people have a positive ANA but do not have Lupus but most doctors won't diagnose Lupus without it because the majority of Lupus patients have it.

"95%-98% of patients with SLE will have a positive ANA test, but the majority of people with a positive ANA test do not have SLE. A positive ANA test can be found in many conditions, including Sjogren's Syndrome, scleroderma, rheumatoid arthritis, & mixed connective tissue disease. Many normal healthy people will also have a positive ANA test. Therefore a positive ANA test, on it's own, does not mean that person has lupus. "
http://www.uklupus.co.uk/ana.html

I know the numbers and percentages get confusing. The link above should explain it all well

tgal
06-23-2011, 05:45 PM
Lindylou - IMHO you are probably OK with your doctor. She listened to you, and she gave you a trial of steroids, and she wants you to call her back next week and see her in two weeks. That's more than a lot of people on this site have ever gotten! The official, textbook criteria for diagnosis of SLE says that 4 of 11 symptoms/conditions have to be present to make the diagnosis. Only 3 of those criteria are laboratory tests. Going back to the definition that physicians are theoretically supposed to follow - a positive ANA is NOT necessary to make the diagnosis.

This is from the Mayo Clinic site. In the U.S. The Mayo Clinic is kind of the gold standard for medicine:http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=tests-and-diagnosis

American College of Rheumatology criteria for a lupus diagnosis
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have 4 of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:

Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
Scaly rash, called a discoid rash, which appears as raised, scaly patches
Sun-related rash, which appears after exposure to sunlight
Mouth sores, which are usually painless
Joint pain and swelling that occurs in two or more joints
Swelling of the linings around the lungs or the heart
Kidney disease
A neurological disorder, such as seizures or psychosis
Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test

Now the tricky part is asking your rheumy about the criteria without making her defensive...

We also have a sticky about this in the Newly Diagnosed section

tgal
06-23-2011, 05:47 PM
Mari, I hope you are feeling better soon. I wondered why you were so quiet this week. Thanks for letting us know that you are still with us ;o)


Not posting much but am around to make sure everything is going well. We (Susie, Rob and I) keep an eye on things even when we are silent!

steve.b
06-23-2011, 08:20 PM
lindylou,
glad you have started the proccess.
it is also good that the rhuemy is following up in 2 weeks.

i have fibro and lupus. they are both very different.
but the symptoms do overlap a fair bit. it can be confusing.

read up but do not confuse your self with too much input.

what day is the next appointment?

Lindylou
06-23-2011, 11:00 PM
Hi everyone,
Thanks again for all your replies! It so helps.
Terry, I'll have a read on the link on the kenalog injection, as I don't know much about it! I was really interested in what you mentioned about the xrays and how that will help the doctor, Terry in what way does this help and what is she looking for exactly? Sorry if I'm being thick! I imagined it's all about inflammation ant you can't see that on X-ray? Thanks again x

Gizmo, thanx for posting all that info! My doc was a lovely lady whom I liked as soon as she introduced herself to me. She spent a while with me but I didn't do too much Talking I mainly answered her questions, but I'm realising there's important stuff iv not told her. Il write it down and tell her next week. As for the criteria Gizmo, it's a hard one, I can definitely discuss with her that I have a minimum of Five at this point, last week it was more as I had a facial rash. I'm just not very good at doing that kind of stuff and she's so nice....but I decided yesterday I should write it all down and speak to her and ask why she changed her mind just on the blood test. However, she redid all bloods and X-rays and the steroid like you say so she's still looking. Your right, I think she was good and I'm lucky to have her.
Hi Steve, my appointments Thursday again. I hated posting a moan about my doctor, because she was lovely, and I knew shed done loads for me, but am scared of not getting better.

Sorry for all these long long posts, I appreciate all your advice so much, I'll go and read about this injection and I'll update and improvements.
Hope your all having a good day today

Lindylouxxxxx

Peridot20_Gem
06-24-2011, 04:31 AM
I just need to correct something here. 95% of people with a positive ANA do not have Lupus but 95% of Lupus patients have a positive ANA (I don't personally believe the 95% of lupus patients have a positive ANA thing simply because so many Lupus patients go undiagnosed). Many people have a positive ANA but do not have Lupus but most doctors won't diagnose Lupus without it because the majority of Lupus patients have it.

"95%-98% of patients with SLE will have a positive ANA test, but the majority of people with a positive ANA test do not have SLE. A positive ANA test can be found in many conditions, including Sjogren's Syndrome, scleroderma, rheumatoid arthritis, & mixed connective tissue disease. Many normal healthy people will also have a positive ANA test. Therefore a positive ANA test, on it's own, does not mean that person has lupus. "
http://www.uklupus.co.uk/ana.html

I know the numbers and percentages get confusing. The link above should explain it all wellMari,

I stated to Lindylou, that 95% of people with a positive ANA have SLE and i did'nt refer to anything else and i would'nt put false information up regarding a site where Lupus is taken seriously especially by myself.

Peridot20_Gem
06-24-2011, 05:14 AM
Terry, I'll have a read on the link on the kenalog injection, as I don't know much about it! I was really interested in what you mentioned about the xrays and how that will help the doctor, Terry in what way does this help and what is she looking for exactly? Sorry if I'm being thick! I imagined it's all about inflammation ant you can't see that on X-ray? Thanks again xHi Lindylou,

By her x-raying she'll be looking for swollen joints which x-rays show and that will give her more conclusions onto what she thinks you may have besides taking bloods which she's done again and whatever your blood readings say, she'll check the x-rays with it, so when you see her again she'll be able to give you a better diagnosis and x-rays show if you have spondalitis etc besides.

Terry xxx

tgal
06-24-2011, 05:47 AM
Mari,

I stated to Lindylou, that 95& of people with a positive ANA have SLE and i did'nt refer to anything else and i would'nt put false information up regarding a site where Lupus is taken seriously especially by myself.

I will try to explain it better in PM so I don't hijack this thread!

tgal
06-24-2011, 11:27 AM
Just want to make sure that we are all on the same page. After talking to Terry I know she understood correctly about the ANA issue but sometimes our fog gets in the way of it coming out correctly.

They say that 95% of people with Lupus have a positive ANA. As I have stated, I don't actually believe those numbers because I believe that those without a positive ANA are not getting the correct diagnosis but that is a discussion for another thread. To clear up the confusion:

As we all know there is no test for Lupus. One of the tests they look at is the ANA test. ANA can be positive for many reasons so having having a positive ANA does not mean that you have Lupus however, of the people diagnosed with Lupus, 95% of those have a positive ANA

Hope that helps

Peridot20_Gem
06-24-2011, 12:06 PM
Yes Mari we're all on the same page (wink) lol xxx