I went to the rheumy a week and a half ago for a routine follow up because I am on mtx and humira. One of my biggest complaints has always been the swelling and pain in my hands and feet. She told me my blood work was perfect and I was in remission. I asked her than why I have so much swelling and pain still and she said it was neuropathy.
She didn't really explain neuropathy or why she hadn't mentioned this in this past. She said the swelling I have does not look like RA however its been the same swelling I have always complained about! I was a bit shell shocked and couldn't think of the right questions after that. I called her back a few days later after doing some research and asked her to call me. I called her back two days later when she still hadn't called and the receptionist said if it wasn't an emergency she most likely won't call me! WTF???
So, I took the liberty to call my internist and get a number for a neuro doc and made an appt for this Thursday. So, yesterday afternoon I faxed a matter of fact letter to the rheumy asking for my x-rays and any relevant info to take with me. I get a phone call from the receptionist this morning and she proceeds to tell me that my x-rays are fine and I don't need them.
I informed her that the doctor herself told me that I have ostiopenia in both feet, most of the cartilage is gone in my right knee, I have bone erosion's in fingers and toes and abnormalities in my wrists and hips. The receptionist refused to listen and kept saying they were normal so I asked her if she actually LOOKED at my x-rays.
She calls me back about 10 minutes later and said she caught the doctor in the hall and yes, I do have those changes in my x-rays but since I was seeing the neurologist for my neck, it didn't matter. Again WTF?????
I have NEVER complained about my neck, always hands feet, ankles, hips knees, but never my neck!!!!!! By this time I was getting really pissed off. The girl said will if you insist we can make you copies for a piece so that will be but she couldn't understand why I would want them since my neck was fine! Ok,. Are you not listening to me!!!! Its my hands and feet, knees, hips, ankles, NOT MY NECK!!!
We go round and round about the x-rays finally I say just copy them and I will pay for them! She still continued to argue with me on why I thought they were necessary?! I told her that since her doctor has not be able to successfully diagnose or treat me that I needed to find a doctor that could and to just do as I ask!
Unbelievable! On top of that, I had my yearly obgyn appt this morning as well. Everything seems to be in working order at that end!
I have already lost 5 babies and I just don't know if I can endure another loss. I guess I will wait until I see the neurologist Thursday and see what they have to say. Oh, and the obgyn wants me to get a mammogram, I'm only 36 but because of my history he says it should be done!
I sure hope everyone else is having a better day! I just wished these stupid doctors would take 5 minutes and actually pay attention to us!! Ok, I need to take some deep breaths and chill out!
On the bright side, it is heartening to know that the dragon receptionist is not exclusive to the UK. We have a saying......'They all think they're 'king doctors don't they'
I hope things improve for you very soon
Nice new information and input from the receptionist but I tell ya what, if there are any different RD's out there you may want to tell them your current RD:
""since you do not want to take care of me as your patient by returning my calls or knowing the difference between an ankle and a neck, then I have'nt the time nor the the medical need for your services.""
Unbelievable. What is with docs? What is with their receptionists? Time to find a new doc Michelee. Don't allow them to treat you that way.
Let us know what the neuro doc says.
Oh Michele. Sorry you are having such problems with the high and mighty rheumies and their employees. Sounds like how things work in Michigan for me too. I am so sick of it!!! I need referals for any specialist I see too. That is like pulling teeth!!!
I am so glad you went to the neurologist and are getting the proper treatment. I am in agreement with everyone else. You need a new rheumy. Hope there are other ones to choose from!
The stupid drs. tell us to avoid stress. Don't they realize they are creating 90 percent of it????
Good luck, Laura
Pin Cushion~I sure hope you don't intend to wait until August to get the results from your MRI. I was sent to a Spine Specialist and he ordered an MRI. He is the one that eventually spoke to me about it.
There's no way I'd wait. Try to ger in touch with your RD personally if no one in his office will help you. Write him a letter if all else fails. You shouldn't be expected to wait that long.
AND; Why are you waiting that long anyway? DO you have RA? What medications are you on? That's a long time before going to the doctor again. Especially if oyu are any medications that requires lab work. OR do you go in for your labs but don't see the doctor?
Thanks girls. I needed to rant and get it off my chest! Yes, the dragon secretaries are the worst!!
I switched rd's last summer because the one I was seeing wasn't being aggressive enough. I will wait until Thursday and see what the neuro doc says. I would love to tell my current rheumy where she can stick my records!! If the neuro doc feels that I do have ra, than I will start looking for a new one. I am not at all convinced though that I even have RA! The current RD has said several times she doesn't think I do yet she is treating me aggressively with mtx and weekly humira. She was convinced I had crohns, so went to a chrons specialists an no chrons.
Now telling me that the swelling I have complained about all along is NOT caused by ra but neuropathy!! You are right, the docs cause more stress than most everything else!! I still have no idea where she thinks my neck came into any of this!
I think I am going to go take a xanax and try and get through to rest of my work day. I am very much considering stopping the mtx but will wait until after my neuro appt to make any decisions. We don't have to ween off that one do we?
Damn Michele, I am mad too. They shouldn't be doing this to you. And I can't believe a Dr. would put you on Humira once a week, without knowing for sure that you had RA!!!! And MTX!! What in the hell are they thinking???
My x-ray's didn't show RA either, but my MRI's did. The x-ray's showed osteoarthritis. The MRI's showed joint erosions and fusing among other things. I wonder why the RD didn't send you for a MRI?
I'm sorry about the baby's you've lost and I'm praying that you'll be able to get pregnant and carry the baby to term. My heart aches for you.
I have no choice in the appointments as we are seen by our area national health trust in the UK. There used to be 5 rheumys and now there are only 2. Both are full up for the calender year.My august appointment was made in December last year even though he knew I was in agony. I have RA in advanced stages in all major joints and I take Humira once a fortnight with pain relief. I suffer with chronic fatigue and anemia too. I have been on avara, mtx, lefluminide, sulfasalzine, and gold injections too , side effects forced me to stop . The humira has been an on off thing as I have multiple infections an have had continous course of antibiotics. I should hopefully have my next jab on friday next week.My rheummy gave me a steroid injection in December to give me "A LIFT". my G.P. gave me a steroid injection into the knees yesterday as they were swollen and i couldnt bend them.( wasnt bakers cyst as i thought).
s for the MRI scan I am goig to pay privately to see a consultant so he can explain the results and I will take it from there. Private consultation is so expensive here. I m writing a letter to the rheumy though as you advised, maybe it will give me the answers I need.
Bless your heart. I wasn't even thinking about you being in the UK when I wrote that. Not that it matters though. Often you'd get simular situations here in the US. We hear stories all the time.
What kind of problems are you having with your back? I have had a time with mine off and on over the years. My doctor has now taken me off Humira so I'm only on MTX (Due to some problems with Humira) my back gets worse when my RA isn't well controlled. The spine specialist I saw says it's RA as well as buldging disk. One wrong move and WAM; I can't move for days. I've felt it "catch a few times here the last few days and though "oh no....not again!" Of all the pain I've had back pain can be the worst.
Hope you get the help you need Sweetie.
Can I have this psycho b*tch's phone number? O.oThat childrens song comes to mind "5 little ducks went swimming one day, over the hill and far away" lol. not sure whats wrong with my back. The pain starts in the lower back and into my hips, its worse if i try to walk to far and if i stand for a few minutes and try to move the pain nearly knocks me to the ground. I walked to the car the other day ( maybe 30 steps) and it was agony to sit down, the pain went from my back into my hips and lower groin.I feel like im going to faint unless i get to lay flat.once i have rested for 15 mins i am fine but then it starts up again if i walk. I also get a burning pain in my buttocks . NEED MRI RESULTS URGENTLY.....Will keep you posted
Michele, when one doctor requests copies of your records from another one there should not be a charge. Also, the receptionist is full of it. Ask for the office manager and report her stinky little butt. This is not standard practice and she is just being rude. Demand that the Rheumatologist call you back. You should not be charged for those records going to another specialist's office. You can be charged if you need records sent like for to LTD, etc. But going from one doctor to another, no not at a page.That's outlandish.
I do hope that you can have a baby. I think when you get your body, the vessel that will hold it, working right then you just might have a chance. 50/50 in fertility is a pretty good chance when you think about it. I know it's hard to think about the pain of another possible loss.
But concentrate first in making a healthy spot for that baby to grow in. That might be the whole reason you haven't been able to carry one through up to now. Maybe you won't be able to have one. But you can still fill your life with kids in so many ways.
How you were treated today is deplorable. But look how fired up you are! I can hear the fight in you. Nope, I don't like your Rheumy either. If she is putting you on that serious of medications and you don't have RA, then that is criminal. Seriously.
Pincushion, that worries me that you have to go through all that. That's an incredibly long time to suffer. Have you no other recourse but waiting? This is what we fear happening here if we got nationalized healthcare. Eight months is an extremely long time and so much damage could happen. I hope you find an answer.
Deanna the waiting times are the worse. I'm lucky that my general practioner is really good and will see me within a day if i need him but specialised care we can wait months to see a DR. I applied for private healthcare but because I have an existing condition the monthly premiums were too high. I have to wait 6 months for an appointment for physiotherapy as well. After reading so many posts on here I realise its a worldwide thing that healthcare is being overlooked.Its the same with disabilty benefits. I recieve them but it took me 5 years of grovelling to get them , I bought my own disabled scooter ( a great ebay buy ) and wheelchair but I was so lucky as we were moved to a house that was adapted for me by social services and they installed a stairlift and a walk in sit down shower too.My husband is phoning the rheumys clinic today to rant at them about my MRI results. I think he is as frustrated as me. I am just so sick of being sick and scared that depression could set in as I am becoming housebound due to the pain in my back. You have been through so much as well so much more than most of us, I wish you well in your fight for help for your daughter and yourself.Thanks girls for the support! I was so pissed off I couldn't sleep last night. I can usually let stuff like this go and move on but man, that was upsetting. More the fact that the rheumy WON'T call me back and when the receptionist supposedly asked her about me, she said I was going for my neck and that isn't even close!!
I just saw her less than two weeks ago and carried on, almost in tears over the fact that she said she was proud of herself for getting things under control and I still had so much swelling and pain. That's when she said neuropathy. I kept asking how can you say things are under control, just LOOK at my sausage fingers, swollen and bruised wrists-something IS still wrong!!!!
She just thrust a script for lycria at me and said to continue the medications and see her in 6 weeks. Good point someone made about not letting the neuro doc know how pissed I am at the rheumy. I do think I am going to ask for MRI's to be done. Thats part of the reason I want my x-rays is to show how much done damage has been done already and to find out if the neuro doc thinks the damage is from ra or neuropathy.
My hubby asked for the phone number of the rheumys office as well and wanted to call and give them the what for as well!!
Get some sleep tonight! You will have more answers tomorrow!
Laura
Good luck Michele, will be thinking of you.Let us know what happensSo, want the lasted update, probably not but I have got to vent!!
I go through the whole thing again and the gl proceeds to tell me there is no way my x-rays can be copied in time for my appt. Well, I let her have it at that point. She brought up the neck thing again and I asked why the heck do you people keep bringing up my neck, I am seeing the neuro doc for my hands and feet?????????? I will spare you the sordid details, 20 minutes later and many tears I hang up defeated.
I must have struck a nerve though as about 10 minutes later, low and behold the rheumy herself calls and is as sweet as pie!!!!!!!!!! I wanted my questions answered so i bite my tongue but I think its still bleeding!
The rheumy spent over 10 minutes with me on the phone. The general gist is that apparently most neuropathies start in the neck and that's why they kept saying my neck was fine. Why didn't someone just tell me that before???????? I do have the bone changes in my hands, feet, knees, hips, wrists and ankles but apparently what the neuro people look for is a generalized osteoporosis, which I don't have. All my damage is right next to the joint, indicating that it IS from seronegative ra or a reactive arthritis and not the cause for/of the neuropathy.
I have joint narrowing and a few of the disc's in my back are starting to deteriorate but again, it all points to an arthritis. The rheumy said if the neuro doc really wants to see my x-rays from June, they can call her and she will narrow down what copies they want so it won't cost so much money.
So, we are back to I do have ra/reactive arthritis but she also believes that in addition I also have neuropathy. She said she didn't bring up the neuropathy before because she wanted my labs to even out to be sure it wasn't the arthritis.
My head is spinning from getting so upset and trying to figure it all out. I still don't know if I buy what the rheumy is saying but I guess we will see what the neuro doc says tomorrow.
Oh, I did ask the rheumy about MS. She said that MS usually presents in what she called travelling symptoms. Meaning different things hurt at different times and my complaints are always the same. I have no history of MS but she did say that pregnancies (5 miscarriages) and the TNF drug can bring MS out. Neither of those things cause ms but if you are predisposed to it, those things can make it surface. She said she doubts I have MS but to be sure to ask the neuro doc tomorrow.
My apt is at 1:30 tomorrow, I will post an update as soon as I get back! Thank you for all the well wishes! I think I need a glass of wine and a xanax!
However, the neurologist did not restrict his analysis to the neck. He did the neurological exam where they watch how you react to certain things, walk, move. Be sure you have as much history as possible for him.
My neurologist is convinced that I have nerve damage brought on by the RA and that yes, I could have MS too. I will say that the medication and the PT is helping some, not enough, but some.
So go there with hope. Your Rheumy should have been straight with you from the beginning. Once these doctors realize that you are not a passive patient and that you have the intelligence and the fortitude to hear the facts, then they tend to get better at being more forthcoming. I really hope this is the case for your future interactions.
You did a great job in advocating for yourself. Now, go look in the mirror and say, "I am one hell of a woman. Nobody better mess with me!"
OK. I've been lurking and reading, and now I'm just pissed.
Michele, those Xrays belong to you! You (or your insurance company) have paid for them. If you change doctors, and the new doc requests them, the old doctor must send them. All of them. No charge! If a neuro requests copies from a rheumy, the rheumy must also send them. The thing that irritates the holy beans out of me is that these MRIs and Xrays can be transmitted among doctors via internet now. It's free to them. How do I know this? I have MS and RA. My rheumy and neuro communicate with one another because they must in order to give me proper tratment and meds that don't clash with one another. And here are a few more things. Neuropathy is just a grab-bag word they use when they can't figure out what's up specifically, and they need to blame it on the central nervous system. It means "something odd going on with the nerves." Neuropathy doesn't necessarily start only in the neck or cervical spine. It often begins in the brain. This is another one you might hear - peripheral neuropathy. It only means nerve involvement in your extremities - legs/arms/hands/feet. I sure heard it enough when they were trying to diagnose the MS. When they finally did, neuropathy was not a term they used any more. Oh. And yes, the TNF blockers - Humira, Enbrel, Remicade - can cause and/or exacerbate MS. Not just bring it out if it was there all along. I can send you a website about this if you like. And the other thing I want to tell you is that if you really do suspect MS, be sure they do an MRI of both the brain and the cervical spine. I had to fight for the cervical spine MRI, because my first neurologist was an idiot and blew it off because I was 52 at the time, and he tried to tell me women as old as me couldn't possibly get MS. I fired him and found a neuro who had passed his medical boards. :)
Anyway, now that I'm finished ranting, I've got to tell you that from what you've written, I think you're right. Everything you describe does not point to the nervous system. You just need to find a real rheumatologist. Good luck to you!
Thanks girls. I have heard the peripheral neuropathy and the autonomic neuropathy and the slew of others. I really do think I have some sort of nervous system disorder because of my previous run in with reflex sympathetic dystrophy, which makes me much more prone to other nueropathys. I read the autonomic neuropathy can cause changes in bowel habits, well, I went from 18 years of being constipated to all the sudden have explosive, painful diarrhea 15-20 times a day for the last year and all the sudden, since starting the lycria, I am pooping like a normal person!
I am still shaking and having tremors and the swelling and pain, blah, blah, blah but I have to believe its all related.
I will update as soon as I get back. I am feeling pretty drained from all the drama but hoping to get some real answers for a change!
Actually, you don't own your records. I know, shocked me too.
Here's my state of Florida: (This part is for hospital records) "Exclusive charge for copies may include sales tax and actual postage. Non-paper records not to exceed .00 per page. Paper records not to exceed .00 per page. An additional .00 may be charged for each year of records requested.
Regarding records from physicians:
The last copies of x-rays I got, four or five years ago, cost me each. Thankfully there were only two I needed.
And here's the UK statue:
"Under the Data Protection Act 1998 (Fees and Miscellaneous Provisions) Regulations 2001 the maximum fee that can be charged for providing copies of health records is £10 for computer records and £50 for copies of manual records or a mixture of manual and computer records. Charges are for copying and posting the records only and should not result in a profit for the record holder. Some types of records, such as x-rays, may be expensive to copy."
Well, I'm back from the neuro doc. Not sure we really got anywhere! She was thorough and read the book of lab work and what files I did have. She asked a ton of questions, we talked at length and she did an exam.
She doesnt really feel that I have neuropathy. She said I have many reasons that I COULD have neuropathy but she didn't really see the right signs that point to it.
All my reflexes are in tack. She did increase the lycria to 100mg twice a day and said we can go even higher if need to.
I asked about the swelling in my hands and she said it did NOT look like neuopathy swelling to her. I asked, if its not ra swelling and its not neuro swelling, what the hell kind of swelling is it than??? She said rather bluntly, the painful kind!
She set me up for the EMG thing in two weeks and will see me two weeks after that for the results. She doesn't expect to find anything but if it shows anything at all, than we will precede to the MRI.
She said the shaking was probably a side effect of one of the medications I am on but couldn't guess which one it is. When I explained to her the bone changes in my x-rays she agreed that the damage seen sounds like RA.
I left a bit teary eyed and defeated but guess I should be happy she doesn't think anything serious is wrong along the neurological lines.
We talked a bit about the miscarriages and she was sincerely upset that there are no answers there either. She also said I have seen the best docs in the area for that and have had all the proper testing there as well. She said I shouldn't even think about getting pregnant for at least a year because it will take that long to ween of all the drugs I am on.
I asked if there was another kind of doctor I should be seeing for my medical mysteries and she couldn't think of anyone and said I pretty much have seen a specialist in most every field.
She said sometimes we get sick and they just don't ever find an answer, sort of like the Hep C I had years ago that magically disappeared or the unexplained miscarriages, they just don't know.
We talked about my depression a bit and she said she would be depressed if she was me. She agreed that my depression certainly isn't helping anything but its not the cause of my problems.
I guess I am not sure what to think. I did not get the feeling she was jerking me around and she honestly seemed intrigued and was listening. I guess I will see if the higher dose lycria helps, get my emg in two weeks and see both her and the rheumy around the middle of February.
Well, regarding the ownership of medical records/x-rays, ain't that just a bite in the butt! So are ya'll saying if one doc asks another for records, the patient still has to pay? Or is that just if the patient wants the records?
Michele, it sounds to me like the neurologist you saw was honest and compassionate. And even though she didn't have answers for you, at least you obviously had a doctor who was finally listening. That's definitely a good thing!
It's just for patients and their represenatives (ie; lawyers).
Most doctors exchange records for free as a professional courtesy.