I haven't posted in a bit, and I don't feel like my pain and troubles come close to what many many people have to deal with daily, but I just need a bit of support tonight.
My second visit with my rheum is tommorrow, and I'm supposed to learn what the latest blood tests show. This same guy told me since I had tested neg for sjogren's, that it was highly unlikely that I had it, and it was more likely MS. He also told me that he wouldn't do anything for me if it was MS, and doesn't prescribe any pain meds; that's up to my GP to do.
My brain MRI supposedly doesn't show any MS leisions, but has some scattered non specific white foci matter ( the "duh" factors), not believed to be of significance. It also showed that the top part of my c-spine indicated significant spondilosis with disc and ostepathe bone spurs. I had a c spine MRI last week, and may or may not find out about this tommorrow.
I just think that I will be treated again like I am nuts, and am only a drug seeker. I've been in constant pain now for more than 10 years, with hip and upper back, now increasing every day for the last three months at a horrible rate. I don't know what even to try to take tonight; the Naisids seem to do nothing, the neurotin I'm afraid of, and the vicoden I think may be affecting my hearing (but does seem the most effective).
If all the tests are neg again, I don't know where to go from here. I wonder how many disorders I just might have; Sjogren's, perhaps MS, perhaps Ankylosing Spondylosis or spinal stenosis, RA, fibro. My dry mouth, elv. sed rate, hair loss, and hearing problems I think show some kind of AI. But I don't have the overwhelming fatigue as of yet.
I'm just feeling depressed, and I'm not making much sense, but thanks for listening.
Sheila
Sheila honey,
You are making very good sense.
What does a person do when their doctor will not address their pain?...when their doctor does not show compassion/concern or is unable to relate a sense of understanding?
Go to the nearest Yellow Pages and find a new doctor.
I'm hoping this guy shows up with a new attitude tomorrow and you come away with your needs met!
Best to you, my dear!
Janna
I hate doctors that give you that blank stare... sometimes I think its because they are afraid to admit they dont have an answer. So if they dont have an answer then you must be a nut of course. But we all know thats not the case at all. Im so sorry for your situation I too am kinda in that spot right now. I have been dx with sjs but am having all kinds of new stuff popping up now. Neuropathies, weaknesses, and a host of others ....its become a whole new party one i wish not to attend but...no choice here. But at least I have doctors that are relatively supportive..some more than others. My eye doctor today was so sweet.. he listenend and just gave me such encouragement and he is such a small part of my treatment. But I so appreciated him. And its funny the first time I met him I hated him. I had decided I was only going back to him once and then I was going to find a new Dr. But I guess everyone is entitled to a bad day. I have been seeing now for 2 years and hes great~! Maybe your dr will be like that too. We can only hope!
Sheila,
I have to agree with Janna. You need to find a new doctor as the one you currently have sounds like a royal you know what ;).....oh yes we just love being in pain and resorting to narcotics for some relief....what a schmuck :P
I really hope you start feeling better soon. I have a lot of the same problems with hearing, dry mouth, pain, hair loss etc. Take care and keep us posted.....Kim
Hi Sheila,
I'm so sorry for the pain you are experiencing right now and I hope you get some answers and some treatment to deal with the pain and other symptoms that you have mentioned here. You deserve to be listened to and if you cant get any satisfaction....its probably time to look for another doctor....even though I know you probably hate the thought of starting over!
But lets think positive......and I wish you good luck tomorrow and I hope this doctor stands up and gives you what you need and LISTENS to your concerns and offers suggestions and guidance for treatment! Let us know how it goes!
Hugs to you......
I am sorry you are having a bad day, it sure sucks when we are hurting and no one seems to believe us. I agree with the others, you need to seek out another Dr., one that will listen to you and believe what you are telling them.
Collie
Hi Janna. Wasn't sure if I was speaking in tongues or not (or hydrocodonese).
I will be flying solo tommorrow for my appts; husband does have to do something in exchange for that health insurance policy for the both of us. I am wondering if the dr will act differently without him there. I'll try to have a good attitude and hope that the tests are revealing something.
Songbird, I also am having neuro problems, and am finding that anti inflammatories do help a bit with the numbness and tingling in my hand, foot, and cranial neuropathy. They aren't doing much for my pain. Glad you have found some good people that are willing to make an effort for you. My opthamologist told me that AI diseases don't cause any eye issues. :o
Where ARE those yellow pages (sez my white matter foci)?
Over the years, I've learned to be cautious about bringing up the pain issue. Seems that just saying the word to a lot of docs labels you as a possible drug seeker. It's moronic and useless, but that's the way it seems around here at least. Younger docs are the worst, the "just say no" generation. Don't trust anyone over 40...they're all drug crazed hippies!
Kim, yeah, shmuck. Well , the rheumy may still get his wish that I really Have MS and he won't have to be troubled by me again. Maybe I'll just take that decsion out of his hands anyway.
Hi Lynnmarie and Collie- thanks all for the great support.
Dear Sheila,
Wow, have I been in your shoes. About a yr ago I was going to a major cancer center pain clinic for my fibromyalgia pain. This new doc came in (he looked about 15) and said I needed an anti-depressant and exercise and he didn't believe in narcotic pain relief.
At that point, I told him that he did realize that many other medical professionals disagreed with his treatment suggestions. And I stood up, told him I needed a new doctor, shook his hand and said it wasn't personal. (I lied...it was extremely personal.)
I DID HAVE A PROBLEM WITH THAT LITTLE SNOT NOSE KID TELLING ME TO EXERCISE AND TAKE SOMETHING I HAD TRIED 10 yrs. ago.
I dumped him that day and never looked back. He didn't believe in FM and I had no use for him.
It was kinda fun firing him!!! lol :D :D :D :D :D :D :D :D :D :D :D :D And my first name is Sheila, too!
Sending you positive vibes and a new day with new hope! xoxox
Thanks, Tinker. That's the attitude I need to have; don't mess with the headbanded one!
I'm glad you spell your name like a normal person and not one of those that make problems for the likes of us (Shelaugh, etc).
May we all shine on..... 8) 8) 8) 8) 8)
Hi Sheila:
I will join the chorus of those who think you need a different doctor. Not just one, but two. Your ophthalmologist says that auto-immune conditions don't cause eye problems? Send him our way and we will re-educate him fast.
Hopefully your appointment tomorrow will give you some better answers.
Genko
Hi Sheila,
So sorry you are feeling so bad and low. Please tell me you live in southeast Pennsylvania. If you do I have a group of fabulous doctors that would be just what you need.
It breaks my heart when I hear of some flippant doctor telling people how they should feel and what they should feel, because he won't give you the medication you need. Geez, why do they think we go to them. Some of us could stay home and have our family tell us the same thing. "Just get over it and get on with your life". ::) Now wouldn't that be wonderful to be able to do just that. Auuggghhh!!! That's almost as bad as "it's all in your head". ::) Just for one day, I wish they had to walk in our shoes.
Take care dear and please, see if you can another doctor. There are good ones out there. ;)
Hugs, Pooh
Dear Sheila,
Thanks for stating my exact feelings re the doctors. I feel most of them are arrogant, dismissive, and feel totally superior to their patients. Especially, "the snot nosed kids" you mentioned. I wish I could live without ever seeing another doctor, but guess I can't. However, I do avoid them as much as I can.
Dixie
Sheila,
It's people like your doctor that make us sjoggies feel guilty all the time. We know how we feel, most of us are intelligent, active, busy people and not likely to make up symptoms. We already feel bad about our ailments and how they affect not just us but those around us as well - and then we get some rubbish advice and opinions from professionals who, frankly, should know better.
Go get another one - I don't know how easy that is for you. I live in Cornwall in England and I'm not sure how I would go about getting a different doctor, but if you're in America I guess that might be easier? Anyway don't let them get you down. It's their problem not yours!
Deep breaths and off you go - we're rooting for you.
Beverley
As for your doc saying AI doesnt cause eye problems get a grip. He needs to talk to my Opthamologist hes the one who caught my sjs when all the rest of my drs werent paying attention.
And as for your pain doc I had one just like him. Kept giving me these really expensive epideral injections treaments that paid him a lot of money but did nothing for me and scared the beee jeebers out of me. When I kept saying I didnt feel better and was still in pain ....he acted like it was the first time I had said it and would schedule another treatment but when I couldnt hear after one of the treatments (even though its was a few minutes) I said no more.
When I met with the new Doc. he asked why I was switching ..he kinda laughed and said I was the 5th patient he had received from the other doc that week. He's great and I am so glad I switched . I feel like an active part of the equation and I know he listens to me but I get to make decisions about what I am comfortable with too....medicine or other choices.
You shouldnt have to suffer or feel like a drug seeking addict. You hurt and there are medicines to relieve that pain. Its like my doctor said if you are taking it for the right reasons then its perfectly ok to take pain medication and you should do so as needed.
Sheila, sorry you're feeling so bad and the frustration just makes you feel doubly worse. As someone once said to me, "the doctor is your servant, not the other way round", stick to your guns and don't stop until he not just listens but understands too.
Wen x
Hi everyone. You were so generous with your responses last week; I've had major computer problems come up, and have been offline and or too tired until recently. I'm really sorry to take this long to thank all of you! :-[
Since I posted, I have seen the rheumy, the eye doc, and my GP, all with lots of complex, frustrating, and depressing results. I'm afraid my pain level hasn't gotten any better, and I'm pretty beat after a long stretch here, so I'm going to have to get into all of this in stages.
An interesting tidbit from the opthamologist I've been seeing for nearly two years with suspicion of glaucoma. All of this time, I've been told my eye pain and irritation was from "allergies", being stressed, too much eye strain. One of the tests ordered by the rheun was the stain test, and I was rather positive on my lower corneas. I realized that they had done this same test a number of times before, and I had been positive EVERY TIME before, but she never once told me that my eyes were dry. Just do a lid scrub, use drops.
What a moron, she is so fired. This could have been started to get worked on two years ago.
The Shrimer's was 13 and 18, if that means much. I think the resident doing the test didn't quite know how to read the results. The tear break up time wasn't done; they didn't know what that was.
This is a large medical institute associated with the teaching hospital!
So much for eyes. She did say I could be put on Restatis, but didn't think plugs were a good idea.
Anyway, I hope I'll get to sleep tonight, with a prescription for Ambian. I wake up every hour or so in pain.
You're all great!
Sheila
Sheila,
I join in your frustration with the eye doc! There is NOTHING more upsetting than finding treatment could/should have been started sooner!
When you consider THE ONLY THING THEY DO ALL DAY, EVERYDAY is evaluate eye health and prescribe eye care.....it is astounding this was ignored!
I mean THIS IS THE ONLY THING THEY DO!!! We pay a premium for such practiced and specialized care! We pay a premium for the test results that were ignored! Why the heck did the test get ordered if it wasn't going to be used as a palliative consideration!
Sorry for the 'scream typing' this kind of thing really gets under my skin.
Janna
Hi Sheila :)
I'm sorry you're having such a frustrating time of it - and so painful. I'm not medical, so could well be wrong, but it sounds like you may have corneal abrasions and Restasis will help with those. It may well sting - and take time - but persevere.
I'm not surprised they haven't advised plugs at this point. I was referred to an optho because I wanted to ask about them but my eyes aren't deemed dry enough for them and mine are now about 19 and 6 on the Schirmer test. Below 10 is considered dry on the scale my tester was working to. First Schirmer I had before Plaquenil my eyes were 10 and 3 - so the Plaq and fishoil seem to have helped. They still sting though and I don't cry.
I hope they address the pain issues. It's hard not to get really down if you're in constant pain.
Take care - Scottie :)
Sheila,
We are in the same boat, I had MRI of my back and brain, nothing. I mean there was a brain but nothing unusual. Had an EEG two days ago and it showed nothing, so why to I have this unconnected feeling from my body and get lost 2 blocks from my house.
I must be going crazy :o If it weren't for the tumor in my bladder I would be concerned about it, but I have moved it to the back burner for now. Let us know if they figure out anything.
As far as doctors prescribing narcotics, I think it is horrible, but if you could send me the name and phone number I would appreciate it. Every doctor I see wants to put me on antidepressants instead of trying to find out what the problem is. I guess if you can't find out what is wrong, why not try to cover it up ;D
I am astounded... I am really PO'd too. The irony that there is another doctor on this same group who has done and published past studies about eye issues and Sjogren's. She at least could have tried to look past the (wrong) aspect of glaucoma and started sorting out what was really going on here. I thought I was in trouble when this one told me in my previous appt. that autoimmune diseases don't cause eye problems, and that my one eye being more painful and irritated than the other was due to an ALLERGY (in ONE eye).
I am considering seeing this other doctor I mentioned who perhaps might know what to do with dry eyes, whatever the cause. Thanks for the info about the plugs, Scottie. I guess as dry eyes go, I am not that bad at this point. I don't know if they did this test right.
Ah, here we go round the 'ology bush, the 'ology bush, the...... :(
The rheum visit I just can't get into right now with all the details, except still sero neg on everything (including RA), and my neuro symptoms are so "rare" for Sjogren's. Salivary scan tommorrow.
The neuro is tommorrow also. I have been tentatively told that there apparently no "MS" lesions in my brain (other spots tho) and C-spine, but I have a LOT of osteoarthritis in my neck, and disc degeneration. Other spinal and foot x-rays show it is also there as well, with misaligned vertebrae in my lumbar region. I'm 49 years old, and I can't understand how this could have happened so quickly. According to them, it's not AK, or RA.
So, yeah, pain. And the rheum says Fibromyalgia, which I'm not so sure about.
Perhaps the only minor positive is that my GP did give the Ambian and Vicoden prescriptions. I do think she's pretty limited in the range of knowledge, but she has always listened when I have said I'm in pain. I'm now supposed to start taking 300 mg of Neurotion every night for a week, then build my dose to see any effect. I do know that it didn't help me sleep. I read scary things about this drug. My anti inflammatory doses are getting higher, and I know it can eventaully do in your stomach.
Epson, I read about your recent diagnosis and I really am hoping the best for you regarding this. I hope that seeing a different group of specialists might get to to a better level of care with all other problems too; esp being treated with believability. I've had sarcoma, and the care level is a whole other ballgame compared to the three ring circus that I've had recently.
You are right in that we share some of these neurological symptoms. I also read that you were experiencing taste dysfunction. I now am going that path, all starting only a couple of weeks ago. Is it Sjogren's, cranial neuropathy, MS...I don't know. It's really devastating me...I love the sensory experience of food, and love to cook. It seems that it is also my sour taste that is affected too, as well as diminished overall.
Well, hope I have good news tommorrow; neuro will say cure is only achieved with trip to Hawaii! :P