Which doctor should I go to now?

[ricknav]

I have selected treatments as a topic solely because my wife (of 32 years) is positive SSA and it sounds like she may had Lupus. She has AutoImmune Disease (AID) in various members of her family, so there is a genetic link. We had our first visit with the Rheumatologist that initially investigated her case over 20 years ago this past Wednesday. At that time she was not symptomatic so he only saw her annually for a few years and then released her. His initial diagnosis now (until further notice) is Unspecified Connective Tissue Disease (UCTD). Our follow-up with him is this Wednesday. Therefore, we have no definitive diagnosis as yet, although we are hoping that the battery of studies that the doctor ordered will give him one. But I doubt it. He also told us that he would probably have to farm my wife out to a more specialized specialist, as he is close to retirement and does not follow patients with conditions that are beyond his scope.

I am new to this website and this forum, but from my readings here, there are a few things that have become blatantly apparent. 1.) There are a multitude of conditions (all different kinds of names) that cover the full spectrum of the human anatomy, that all fall under the heading of autoimmune disease. 2.) No matter which symptoms the patiences describe themselves as having, they are never definitive. Every symptom can be read into almost every one of the disorders. 3.) There are no cures. You can only treat the symptoms. 4.) Treating the symptoms appears to be as convoluted as the quandary the doctors seem to have in deciding which tests to order and what they all mean. 5.) People with these disorders need help. Now.

I know these are blunt statements but I am a realist and don't believe in handling the real and human suffering that these patiences (or any for that matter) have had thrust upon them with what appears to me as organized and systematic chaos by the medical community.

I am writing here to ask for feedback from any of you as to where we should go next. To cut through the bull and patronization. Let me explain (I'm sure this will all sound familiar to many of you):

On our initial visit my wife (Cynthia) presented with the following symptoms:

Arthralgia - Wrists, jaw (right side specifically)
Fever Of Unknown Origin - 99-100 range
Malaise And Fatigue - up to 8/10 intermittently.
Vaginal Dryness
Numbness Localized - Wrists and fingers. Especially the right hand. Extreme burning.
Shortness Of Breath - 50 ft walk and she is winded.
Dry Mouth/Salivary Gland (Xerostomia)
Swollen Eye Lids - Single occurrence. Suspect not having taken HCTZ(?)
External Ear Pain - Extreme burning 10/10 - periodic.
Mouth sores
Cough, Dry

Over the weekend she has diminished to the point were she can only stand for a few minutes before total fatigue sets in. The burning pain attacks in her right wrist have left her holding her whole arm by her side as if paralyzed. These attacks now have her up almost every hour of the night so she is not getting much sleep either. She was given Flexeril 10 mg but has only taken one at bedtime. We may have to try bumping to two (the Rx said up to three but we try to be conservative on the meds but will do what we have to when necessary. She can move her arm but won't for fear of initiating another crises. Her cough has become more frequent adding to her SOB.

I have chronicalized everything that happened to her this weekend (symptoms, temperatures, frequency of meds, etc) and faxed them to the doctor’s office ... twice. Once on Thursday when she came home in 10/10 pain ... only to find that the doctor does not work on Friday, so I had to call the on-call doctor. Of course you know where that got me (although she was very nice ... everyone is always very nice). So I waited until today, Monday, to fax over her "log" from the whole weekend digression (all these measures were suggested by the doctor in the first place). I called at 0900 to find out what the doctor thought I could do for my wife. The "nurse" said that I would have to take her to a pulmonologist for her breathing problem and asked if we had done that already. ?????  She also said that the current regimen of meds she was on was ok to continue (even though I have read that a perpetual dose of 800 of Ibuprofen can be toxic to your liver ... of course, what isn't these days. I asked if the Darvon N-100 could be changed to something else (it's not helping and I don't know if anything will but I am not the doctor) and she said she would ask. I am to call the nurse back at 1200.

I need help. If the Rheumatologist won't help (we will wait and see) where do we go next. Treatment of these symptoms seems to be universal for all the various flavors of AID: immunosuppressants, anti-inflammants, some conditional meds & pain meds. If I am wrong I willfully stand corrected. However, I don't want to wait until my wife is immobile and/or bedridden before something is done. Please.

[luppygirl]

Actually not moving her wrist will cause more damage.  You must keep those joints moving. Fingers, thumbs, wrists elbows, knees ankles toes. Everything.  If you don't move them they will eventually stiffing up to the point where you lose the capability of using these body parts.  No matter how  stiff the hands are just keep opening and closing them in fist ( not tight). When you first wake up in the morning lay in bed a few extra minutes and just bend you toes up and down and do your ankles in a circular motions.  Do same with knees... I am not talking about anything vigorous, it is just to keep them lose. If you guys don't trust what I am saying you should see a physical therapist she can give great exercises exercises to keep things from stiffening up ( stiffening up actually will cause you more pen in the long run) And if you don't want her bed ridden never let her stay in bed all day long. Yes she will be in pain.  Maybe she take and extra pill when it comes to walk time.  Exercise, keeping joints moving, and do not just lie on couch or in bed.  You must do light exercise. Nothings pressing on the joints, definitely no running. yoga is a really really great way to keep her body for crippling up on her.  I am not expert but i was dx'd over 4 years ago and i have learned things from trial and error.  And oh the errors were bad. I love shopping, people with Lupus should not shop for hours in a row even with pain meds because i paid the price by being stuck in bed for 3 days because i couldn't move.  It takes a long time if ever to learn your limits,  that is the one things I am having a really hard time learning my lesson from.  Oh well what's a girl to to eh.!!!!

[luppygirl]

can i also ask you one thing could you please not us the acronym AID that freaks me out.  I don't mean it in a bad way.  I just have irrational phobias and when I see AID it makes it sound like we have AIDS and that just scares the **** out of me.  Sorry i know this seems silly but it causes me anxiety to see it written like that.  Maybe i should be locked in some kind of ward!!!!  I am really trying to limit my stress no matter how silly some of them are the more stress i limit the healthier i begun and also you guys.  Sorry again for sounding like a nut. Please i hope i don't get to many negatives remarks but if you have to vent them the vent them.

[luppygirl]

can i also ask you one thing could you please not us the acronym AID that freaks me out.  I don't mean it in a bad way.  I just have irrational phobias and when I see AID it makes it sound like we have AIDS and that just scares the **** out of me.  Sorry i know this seems silly but it causes me anxiety to see it written like that.  Maybe i should be locked in some kind of ward!!!!  I am really trying to limit my stress no matter how silly some of them are the more stress i limit the healthier i begun and also you guys.  Sorry again for sounding like a nut. Please i hope i don't get to many negatives remarks but if you have to vent them the vent them.

[TrudieC]

While you wait on doctors (and keep pushing to get into a rheumy who is actually working) have her use heat.  I find it tremendously helpful.  Each morning I soak in a warm bath and wrap a heating pad around really tender areas.  This really loosens me up.  After a bath is a good time to do some stretching exercises and exercise alone (easy like Luppygirl said) can help to relieve pain.  Good luck and I hope she can get some relief soon.

[ricknav]

Thank you for your response. I like and agree with your assessment on loosening up the joints with movement so much that I am going to print it up and take it to my wife right now. You see that is what I've been harping to her about everyday. I know that she thinks that I am just being over reactive. Now I can show her that someone else that has been through this has found it to be true as well. This is the kind of information that people need to read about on a forum. Real-world, practical, tried and true help that they can do themselves. I think that everyone gets so caught up in thinking and talking about their situation from the medical perspective, that they don't ever mention the little things that they have discovered on their own that helps them. I cut and paste all these little helpful suggestions to a separate file and save them for future reference. I'd like to see a separate thread or community her that is dedicated to nothing but "the peoples" home remedies.

BTW, I see what you mean about my choice of using AID. I was just being lazy in my typing. I'll have to come up with a new one. Thanks again.

[ricknav]

Thank you for this advice. I will have her try the direct heat. Although she normally takes showers I think a bath would be worth a try at this point.

[luppygirl]

If I sleep through the night ( which is very rare) i am so stiff from not moving that it takes me an extra half hour just to get the stiffness out. and when i was working, i used a key board all day.  I would take a break every hour or so ( just a 2 minute break) just to open and close my hand about 10 times each, same with feet ( especially depending on what shoes i have been wearing) and ankles I even do wrists and back and forth neck turns.. also stretches for my legs and arms.  It really does help.  Everything doesn't feel as tense and tight. I found i just can't manage without doing it

PS..  I know what you mean about being lazy and writing short forms but i am a bit nerotic (sp)? so when i see it I start wondering if I have it. Which i don't because then I would be on the wrong site... lol

[ricknav]

Thanks again for the advice. BTW, I like your sense of humor ... and I am glad to see that you have one. Many prople don't these days.

[luppygirl]

I have a very  good sense of humour.  With all the things wrong with me you really do have to laugh about it.  Crying sure isn't going help and nobody wants to be around someone who cries and whines and keeps throwing pity parties ( well i guess if they want to supply the booze who am i to say no!!!)  If only i drank... lol.  Also it has been proven that laughing does help the immune systems.  There might be a bit of a flaw in this theory because I have always been a laugher and prankster and I still got sick but i guess you can look at it as imagine how sick I would have been had i not the personality i do have!

Please please make sure your wife keeps a mobile as possible.  She will get old before her time. Just keep telling you wife that this advise is coming from sick people who feel like she does.  I do have really bad days where it does hurt just to blink but i try anyways even though staying in bed would be easier especially today when it is dull, rainy, damp days.  I ache and i am stiff and i don't want to go anywhere and I just might stay home.  but while at home i am going to try to do stuff a little at a time. If you do to much you will cause yourself more pain.  first start off doing 10-15 minutes of work every 2 hours then slowly work your way up at your pace.  You could add a few minutes each day or every week. Then next maybe start doing it every hour instead of 2 hours. It is all whatever makes you feel comfortable but to keep moving.  You should keep a journal of your days that way you could track what you have done when you felt like you have over done it or visa versa (SP?) I think me typing visa is my bad shopping habit coming out!!!.  There were time when i first got sick that I would have a great day and be so happy and get all this stuff done.  It felt so good to feel normal and happy  But viola never fail I was stuck in bed for a few days after because i had over done it. But even being bedridden I still had to keep my joints moving. So by using this journal you can look back and see what you did the day before you landed yourself in bed and go to yourself " let's not do that again" and then modify the work next time and it won't be better.  Just think of it as training for a marathon. The marathon of your life!!!

[ricknav]

Thanks again for your insight. My wife (Cynthia) has a job which involves being on the computer all day. This is good on the one hand because she can do it from home. On the other hand, that is pretty much where she sits all day. It is amazing to me that despite all her pain (especially in her hands and fingers) she can still type!?! Nevertheless, I have to keep reminding her to get up and move around all the time. I know that it hurts her to do this but, at least so far, after she is up and mobile she does loosen up and can get around ok. The key is getting her to act on this on her own. She does pretty good most of the time but I am sure more is necessary. We just went to her Rheumatologist, post-labs, follow-up yesterday and the verdict is Lupus. He is sending her to another Rheumatologist that specializes in Lupus for further evaluation but thus far he says that her organs are not involved and that she is most likely looking at just treating her symptoms (fever, fatigue, constant joint pain & SOB). He is starting her on a small dose of Prednisone and taking her off of the ibuprofen that has been sustaining her since the onset. He also starting her on Plaquenil although, he says that the specialist may take her off of it since the degree of Lupus she has seems to be minor. Man, for have such a "minor" case of Lupus, she sure has been having a lot of problems. Anyway, just an update on where we are. Thanks again for all you help. I sure am glad that this forum exists and for great people like you that take the time to participate.
Take care.

[luppygirl]

I was put on plaquenil as soon as i got dx'd and he has never mentions me ever going off of it. If I had the choice between going off of prednisone and going off plaquenil.  I would go off of the prednisone in a heartbeat.  If course prednisone can be a godsend when you are so sick and they don't know how else to help you.  I myself broke out it hives ( i am not allergic to anything) I went into anaphallix (sp?) they couldn't get it to stop no matter how much antihistamines, epenephrine,  i can't take benetryl because it send my heart rate through through the roof.  The had been giving me Atarax but it wasn't strong enough. so i gave them the to ahead to give me benedryl but that they would have to give me valium before the benedryl.  Everything happened like predicted, I ended up in the hospital  for almost a week.  They kept me on high dosages of predinsone ( i hate that stuff witha passion) high doses of antihistamine then sent me to an allergist even though I told them that I wasn't allergic anything. So like a good girl i went and guess what I wasn't allergic to anything...lol I was so covered with hives that the nurse had thought that they had done the tests already done but i laughed and said no this is how i look everyday. I was quit a sight. No pictures where allowed to be taken during this time period anyways they sent me on my merry way and it wasn't until the following Sunday that i woke up and my legs hurt so bad that i couldn't walk my now ex husband brought me to the ER. when picturing this you have to keep in mind the edema i had all over my face, eyelids and we can't forget the lips ( i didn't want those to go down they were the prefect Angelina Jolie  lips, but they wouldn't let keep them sighhhh oh well) anyways all the first stuff then the leg thing a week later they ran some blood will i was in the hospital again and that is when they thought I had Lupus.  The booked me with a rhuemy  and next thing you know i have lupus.  They worked really hard at getting me off of prednisone because yes it can be a life saving tool but long turn use can cause alot of harm to the body. lung damage, kidney damage bone lose just to name a few.  I am not saying this to scare you I just want you to be informed.  You can read information on the internet.  A lot of it if valuable information but you have to take what is written with a grain of salt there are alot of people out there with a lot they want to say.  For good information you are best to go to the Lupus Foundation Of American ( at least that is what i think it is, I am from Canada) Here in Canada we have the Lupus Foundation of Canada.  Also each province has it's own group so  I am sure each state has a prgram. Mine  is done through the Arthristis Society.  So maybe look in the yellow pages and see if they have anything like that.  Sorry I wrote so much. I am so bad for that i must stopn

[ricknav]

You just go right on writing. I am beginning to see that that is about all that's left to many of you who have to deal with what cards you've been dealt. I sure am sorry that you have had to go through so much pain. I have always been one of those people who look at all the unnecessary pain, disease and suffering in the world and ask "what the hell is this all for?" But I also know that dwelling on it doesn't do any good either. You just have to try and stay focused on tomorrow. That's why I've been trying to be the "motivator" for my wife. "Get up, take a shower, get dressed, keep moving & what do you want to do today?" She has not had the pain to the extent that you have but I see it in her eyes and demeaner that it takes a lot out of her. Anyway, like you said, sometimes I tend to pontificate, so I will quit now.

Take Care

BTW, sort of off the subject, what is your take on Canadian socialized medicine as it compares to ours? I have always wanted to move to Canada but Cynthia has not.