PDA

View Full Version : I hate LIMBO land!



MyNest
08-31-2011, 10:53 PM
Seriously, it's fine being in Limbo Land when I feel "fine". My fine used to be great, but now my "fine" is defined by whole new set of set of rules. If I am not too tired to get out of bed, if my head isnt aching, if my hips arnt hurting, if I am not nauseated, bla, bla, bla, I must be doing fine. But I am the woman I used to be!

But when I feel like complete crap, I wish that someone in my life (list of doctors) would take some time to look at my big picture and say yes, you have Lupus or some other defined autoimmune disease, and treat it with kindness and respect. As it is, I feel like a ball in one of Venus William's game of tennis, going back and forth, never getting enough time to explaine myself. Obviously I dont WANT an illness, but my labs are crystal clear and my body is clearly in sync with some type of autoimmune thing...my guess is Lupus...or Scleroderma...or both. With no diagnosis at the moment, my treatment is yoga and tylenol....NOT working.

Today is one of those days. Truthfully this week has been one of those weeks. I do have a pending doctors apointment, but my hope for any real help is nill. I have been playing autoimmune "ring-around-the-rosy" since 2005. I'm so sick of it, yet doctors continue to insist that I follow up with the rheumatologist. So off to a new one I go...next month. It almost hurts to have hope for a caring doctor.

I have been diagnosed with three different but simalar autoimmune diseases and treated with medications twice since 2005 and twice that diagnosis was retracted by another doctor who didnt agree. The first time it was Lupus. He laughed after looking at me and reading my sad stack of a chart and said you clearly have Lupus. I was given Plaquanil and steroids. The next said that Lupus was a diagnosis that any dumb doctor would give me, but thats not what I have, this doctor said I had Scleroderma. I was given Methotrexate. Nope said the next doctor, you look fine now and I think you have some sort of mixed connective dissorder and fibromyalgia.

Well thanks! So today I feel like crap, and thats my story. Am I the only one???

rob
09-01-2011, 05:50 AM
Hi Mynest,


I was diagnosed with SLE in 2004. It was confirmed by more than one rheumo, including the one I had to see in order to qualify for disability.

I have SLE.

Since then, I've moved cross country, and have been through quite a few rheumo's. I learned that I have to TELL these people why I am seeing them, and not let their sometimes less than analytical minds wander too far from that. I don't ask for rheumo's opinions anymore until we establish some ground rules, and they show me that they are willing to stick to those rules. I am not there for an opinion on whether I have Lupus or not. I am also not seeing them just so they can second guess a proper diagnosis made by a competent group of fellow rheumo's. Just because they don't know jack about autoimmune disorders, does not make it OK to "un-diagnose" me because they are ignorant about a subject that they are supposed to be an expert on.

I tell them I am seeing them so they can monitor my Lupus and keep me going on my already effective treatment plan/meds. If they cannot grasp that I am there to have an existing autoimmune disorder monitored and treated, I turn around and leave. I had one rheumo start his first conversation with me by asking me "what makes you think you have Lupus?". UH, because I do? Because I was diagnosed with it in 2004. Because I was approved for full disability because of it. Because my mother also has Lupus. Because I met and exceeded the diagnostic criteria...

That appointment did not go well for that rheumo. If I sound angry, and sound like I have very little good to say about most rheumo's, then so be it. There comes a point where we have to walk into that Dr.'s office with a clear cut goal-treating our autoimmune disorders. I refuse to allow any Dr. to throw my life into a confused shambles of second guesses as to what is wrong with me. I will not allow any Dr. to endanger my health by taking me off the meds that have worked so well for me in my seven years of living with Lupus. If I have to be an a-hole to achieve this, then once again, so be it.

They work for me. I walk into the office with the attitude that I'm running the show, and that they are there to do a job. This is what works for me.

Rob

debbie-b
09-01-2011, 07:26 AM
I remember, being in limbo, was worse that the final diagnoses.
Don't give up, there is a few good rheumy's out there. Alot of times, the dx takes a long time.
Good luck with your new rheumy.

Debbie

tgal
09-01-2011, 07:36 AM
Hi Mynest,


I was diagnosed with SLE in 2004. It was confirmed by more than one rheumo, including the one I had to see in order to qualify for disability.

I have SLE.

Since then, I've moved cross country, and have been through quite a few rheumo's. I learned that I have to TELL these people why I am seeing them, and not let their sometimes less than analytical minds wander too far from that. I don't ask for rheumo's opinions anymore until we establish some ground rules, and they show me that they are willing to stick to those rules. I am not there for an opinion on whether I have Lupus or not. I am also not seeing them just so they can second guess a proper diagnosis made by a competent group of fellow rheumo's. Just because they don't know jack about autoimmune disorders, does not make it OK to "un-diagnose" me because they are ignorant about a subject that they are supposed to be an expert on.

I tell them I am seeing them so they can monitor my Lupus and keep me going on my already effective treatment plan/meds. If they cannot grasp that I am there to have an existing autoimmune disorder monitored and treated, I turn around and leave. I had one rheumo start his first conversation with me by asking me "what makes you think you have Lupus?". UH, because I do? Because I was diagnosed with it in 2004. Because I was approved for full disability because of it. Because my mother also has Lupus. Because I met and exceeded the diagnostic criteria...

That appointment did not go well for that rheumo. If I sound angry, and sound like I have very little good to say about most rheumo's, then so be it. There comes a point where we have to walk into that Dr.'s office with a clear cut goal-treating our autoimmune disorders. I refuse to allow any Dr. to throw my life into a confused shambles of second guesses as to what is wrong with me. I will not allow any Dr. to endanger my health by taking me off the meds that have worked so well for me in my seven years of living with Lupus. If I have to be an a-hole to achieve this, then once again, so be it.

They work for me. I walk into the office with the attitude that I'm running the show, and that they are there to do a job. This is what works for me.

Rob.

Dannnnnnnggggggggggggg! You go Rob! (Can hear a crowd going "whoop whoop" LOL (now back to your regularly scheduled thread0

tgal
09-01-2011, 07:44 AM
I am so sorry that you are going through this! Way too many of us run on this merry go round for years. You are*
I wasn't clear about your current meds. Are you still taking plaquenil and steroids? If not did they help when you were on them?

( For me FINE is when things suck! At one point in my life I worked in a drug treatment center and fine was the word people used when they didn't want to discuss their feelings so FINE is "F****D Up, Insecure, Neurotic and Emotional. Aerosmith actually wrote a song about it. LOL I am fine way too often!)

Manderson
09-01-2011, 08:30 AM
Move over and make room for me in Limbo Land. For two years now I have had symptoms of something AI. Last summer's bloods showed a positive ANA but nothing else. This summer the symptoms got much worse with the burning and aching joints. PCP sent me to Rheum. Went earlier in the month - nothing, zip, zero, nada. Bloods are fine with the exception of an elevated RPN and xrays show nothing other than what one might expect from aging.

Odd thing was that within one day of rheum appt. all symptoms disappeared. And they stayed gone until a few days ago. The burning and aching in all joints is gradually creeping back in. My energy level is still good tho.

So I don't know - - do I leave this alone or continue to look for answers? Are my bloods always going to be normal? Right now, the doc I work for is looking at my results and he might refer me to a chiropractor who is also an internist and rheumatologist. My ins will not pay for this since I am in HMO.

MyNest
09-01-2011, 09:09 AM
Rob, so many truths to what you said! I need to adopt your attitude and not let docs play the guessing game with my health after 10 min. of meeting me! In fact I wont!
Thanks.

tGal, thanks for understanding what "fine" really means. There should be a patient dictionary that defines our code words like Fine-meaning a state in which a patient feels like crap, but doesnt want sympathy or is avoiding a long winded explanation of their illness that will go in one ear and out the other, rendering it useless.

My current meds are Topomax for the headaches and migraines. I have a few less migraines, but the headaches are not the same and last for days at a time. My primary gives me Skelaxon for muscle pain and phenegran for nausea becuase I ask for it. I used to take Plaquenil (and a corse of cortosteroids), and thought that I couldnt live without it...but after about 2 years, I could no longer tell if it was working. I felt awful with Methotrexate, but that was a really rough time health-wise, so its hard to know if it was my body or the methotrexate.

Anyhow, thanks for the back pat! I needed it. I hope you all are feeling a little better than fine!!!

Manderson
09-01-2011, 09:20 AM
I am so sorry that you are going through this! Way too many of us run on this merry go round for years. You are*
I wasn't clear about your current meds. Are you still taking plaquenil and steroids? If not did they help when you were on them?

( For me FINE is when things suck! At one point in my life I worked in a drug treatment center and fine was the word people used when they didn't want to discuss their feelings so FINE is "F****D Up, Insecure, Neurotic and Emotional. Aerosmith actually wrote a song about it. LOL I am fine way too often!)

This I did not know. Thanks T. If anyone would know F.I.N.E. it would be Steven Tyler. Ever read Walk This Way? Interesting read.

ETA: I do know the song, but I didn't know the meaning behind it.

rob
09-01-2011, 10:15 AM
.

Dannnnnnnggggggggggggg! You go Rob! (Can hear a crowd going "whoop whoop" LOL (now back to your regularly scheduled thread0

Bad Rheumatologists bring out the inner Drill Instructor in me-

Click for Fullsize-
4270

Gizmo
09-01-2011, 12:50 PM
I refuse to allow any Dr. to throw my life into a confused shambles of second guesses as to what is wrong with me. I will not allow any Dr. to endanger my health by taking me off the meds that have worked so well for me in my seven years of living with Lupus.

Go Rob!!! I want to make this into a plaque to hang on my wall over the kitchen sink so I read it every day!

Gizmo
09-01-2011, 12:59 PM
Right now, the doc I work for is looking at my results and he might refer me to a chiropractor who is also an internist and rheumatologist. My ins will not pay for this since I am in HMO.

We have had to pay doc's out of pocket and it's OK (I almost typed FINE) if they can actually help you. Would your doc write an appeal to your HMO for you to be seen out-of-network? We were shocked to find that our PPO did that for my daughter to go out of state and didn't blink an eye at the $775 consult fee. Of course we had to pay up front, then get reimbursed.

Does this chiropractor have an MD or DO after his name? If not, he cannot prescribe traditional medications that folks with autoimmune disorders take. If he is a chiropractor who says he specializes in internal medicine and rheumatology, I would be very cautious as his training will be vastly different than a traditional "physician." Just my two cents worth.

n.mac
09-01-2011, 01:23 PM
A chiropractor who is also an internist and a rhuemy-thats quite a combo.I would be carefull!

magistramarla
09-01-2011, 07:14 PM
MyNest,
We've all dealt with incompetent rheumys. I hope that your next one turns out to be a good one.
My first one was awful, but my second one was like the dream doc that you described. She told me that sure, my blood indicated low levels of several AI diseases, but when you add them all up I was obviously in pain and needed to be treated.
Unfortunately, we've moved to another state and I'm dealing with another rheumy who wants to deny everything that the good one said. I'm just getting my prescriptions from her and waiting until we move back to Texas and I can see my good rheumy again.
When you find a good one, hang onto him/her.
Hugs,
Marla

Manderson
09-02-2011, 07:12 AM
We have had to pay doc's out of pocket and it's OK (I almost typed FINE) if they can actually help you. Would your doc write an appeal to your HMO for you to be seen out-of-network? We were shocked to find that our PPO did that for my daughter to go out of state and didn't blink an eye at the $775 consult fee. Of course we had to pay up front, then get reimbursed.

Does this chiropractor have an MD or DO after his name? If not, he cannot prescribe traditional medications that folks with autoimmune disorders take. If he is a chiropractor who says he specializes in internal medicine and rheumatology, I would be very cautious as his training will be vastly different than a traditional "physician." Just my two cents worth.

Right now I'm in a wait and see holding pattern. Doc I work for is still doing a diagnostic puzzle with my bloodwork. My symptoms and the results just. do. not. match. I think I could be an episode of House.

MyNest
09-02-2011, 09:18 AM
Lol, I think that we can all sympathize with an episode or two of House! They always throw in an autoimmune disease into every episode just for kicks and giggles. I have a feeling that now after Venus W. has come out with her diagnosis of Sjogren's there will be many people thinking that they have it. That may not be all bad! Their doctors will finally have to take a good hard look at serious AI cases.

If you dont mind me asking Manderson, how does you blood work and symptoms not match up? Do you have any markers to lead you in one direction or the other?

rob
09-02-2011, 09:33 AM
I have a feeling that now after Venus W. has come out with her diagnosis of Sjogren's there will be many people thinking that they have it. That may not be all bad!

I agree, Not a bad thing indeed.

I suspect that there are a good number of people out there with Sjogren's and a multitude of other autoimmune disorders who are un-diagnosed. If this helps folks figure out just what all these seemingly unrelated symptoms they suffer from are caused by, then it's definitely a good thing.

Nonna
09-02-2011, 04:12 PM
I'm a little late to this thread. My GP is a DO so she can do the chiro stuff if I need it. I agree with the others don't trust a chiro/internist/rheumy. that doesn't sound safe. I spent 30 years in limbo, not knowing why. these meds have helped so much.

Patience is a virtue, that we need. Plus Good luck with the Docs we go to.

Manderson
09-02-2011, 06:43 PM
Lol, I think that we can all sympathize with an episode or two of House! They always throw in an autoimmune disease into every episode just for kicks and giggles. I have a feeling that now after Venus W. has come out with her diagnosis of Sjogren's there will be many people thinking that they have it. That may not be all bad! Their doctors will finally have to take a good hard look at serious AI cases.

If you dont mind me asking Manderson, how does you blood work and symptoms not match up? Do you have any markers to lead you in one direction or the other?

Last summer when I had no symptoms at all (other than psoriasis) I had a pos ANA, CRP and elevated SED rate. This summer I have a ton of symptoms (mostly of RA), all bloodwork is clean - no inflammation whatsoevah. When I went to first appt with rheumy, she even remarked on my elbows which were swollen and warm to the touch. Ten mins after appt was over I went across the hall for xrays and bloodwork and they showed nothing other than a slightly elevated RNP.

tgal
09-03-2011, 10:51 AM
Last summer when I had no symptoms at all (other than psoriasis) I had a pos ANA, CRP and elevated SED rate. This summer I have a ton of symptoms (mostly of RA), all bloodwork is clean - no inflammation whatsoevah. When I went to first appt with rheumy, she even remarked on my elbows which were swollen and warm to the touch. Ten mins after appt was over I went across the hall for xrays and bloodwork and they showed nothing other than a slightly elevated RNP.

OK, this comment makes me mad! It again shows that most doctors, nice or mean, have no idea how to diagnose Lupus. A diagnosis of Lupus is made not when you have all the results at one time but when you have had them over a period of time. For many of us it takes awhile to get the Lupus diagnosis but any test, any symptom that you have had at ANY point is not discarded. For example: 2 years ago you had a positive ANA, CRP and SED rate. Those go away but 1 year ago you had some horrible rashes. Those go away but today you are having issues with the sun but all the tests results are now normal. So? A Lupus diagnosis is made on a cumulative scale meaning that you don't have to have all the symptoms at one time. It is like building a house. the walls don't go up at the same time the roof is being put on but when the roof does go on we can't go in and take all the walls down because we now have a roof can we? Of course not! Well we can't discard symptoms because we can't see them now. We just keep adding to the list

1. Positive ANA with speckled pattern (2010)
2. Increased CRP (2010)
3.Increased SED Rate (2010)
4. Warm and swollen elbow (2011)

See, each new symptom is added to the list but no symptom should be removed from the list simply because the blood work/symptom has changed. The Doctor will continue to take tests to rule out other possibilities but he/she should never ignore the tests that have already shown up as abnormal. Understanding
about the cumulative affect on symptoms is step 1 in getting a diagnosis




PS This will most likely be the only post I make for now and I hope it makes sense. I have worked on this for about an hour due to the fog but I tried really hard to make understandable.l

Manderson
09-03-2011, 11:22 AM
I know what you're saying T and I totally agree. And I'm not sure that she's disregarding the past results but she did not want me to make a follow up appt either. I think I will go back to my PCP; not sure what she can or will do for me but she seems more concerned than the rheumatologist. I'm in a HMO so I have the same group of people all of the time. There are a few other rheums in the group, but first I will call current rheum's office and leave a message for her. I want to know how to proceed and if they are just going to write me off based on these latest results, then at least let me know so I can start looking outside of the network. I appreciate your input T.

magistramarla
09-03-2011, 08:46 PM
What Mari described is the way that it should be. However, I've found that in real life, we often run into arrogant docs who want to only believe the test results and symptoms that they themselves see. Anything that a previous doc observed is disregarded. It doesn't make sense to me, but it seems to have something to do with their egos - sigh!
Good luck, Manderson.
Hugs,
Marla

giggle
09-04-2011, 07:59 PM
I havent read all posts, a bit tired.

But I agree with everything Rob said in his first post. Once you get your diagnosis... do not allow another doctor to remove that diagnosis unless you feel you were not properly diagnosed in the first place. You have to make it clear you arent asking for a second opinion, you just need your condition monitored.
I have never allowed someone to take away my diagnosis. I was very definitively diagnosed in the beginning and while my blood work may look good at times, that is no reason to strip my diagnosis but a beautiful indicator that my treatments are working to control my disease!!!

Doctors dont know everything, even Rheumys arent the best. To be honest I think they mostly treat the elderly for RA and can often get very complacent, a lot like GPs. Good ones are hard to find and when you do find a good one hang on to them!! A good one would understand that blood work is not 100% of a lupus diagnosis and will look good if you are on medication.