No diagnosis but could use some help.

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Rochetm
New Member


Date Joined Sep 2011
Total Posts : 6
   Posted Yesterday 1:55 AM (GMT -6)   
This is going to be a very long post so you may want to grab a drink and a comfortable seat. ;)

Something to keep in mind, up until just over 2 years ago I had basically no medical history. I have had a constant battle with migraines since I was 5 but that is it. Rarely got sick and rarely got very sick when I did. Allergy to nothing and most athletic person in my family. I was so healthy outside of my migraines that my family and friends picked on me about it. That can happen I guess when you do better than normal on things like hearing and vision tests.

So with that said....

about 4 years ago I did some masonry work for an inlaw and my hands swelled up a lot, where very stiff and hurt for a few days. I thought nothing of it because it was hard work that I had not done in over 5 years. Around this time I started to have pain in the arch of my right foot but it wasn't that common so I just assumed I had done something wrong and hurt it or it was old age (24 at the time). I continued to have swelling in my hands from time to time but always followed heavy work so I thought nothing of it.

Around 2.5 years ago I started having what seemed like a problem with IBS or glutten intolerance but the problem was completely random and all signs pointed to nothing being wrong. It was also at this time that my doctor told me my foot pain was normal. Because of these issues and my son being born my wife and I decided it was time to get ourselves into some better habits. I quit smoking and we began eating much better. So with the better diet my IBS like problems seemed to get better a little but again they where so random that couldn't really find a source to the problem.

6 months go by and I get a cold, few days later I suddenly started having a hard time breathing. I had to work at being as relaxed as possible and breathing so I didn't feel like I was going to pass out. My wife took me to the ER and I was treated for pneumonia and sent on my way. My doctor called me in and said that the xrays showed no signs of pneumonia so they didn't know what caused the problem.

Over the next few months every now and then I would have another fight with shortness of breath but since I was armed with an albuterol inhaler (which seems to help some) I continued on with my random hand swelling, foot pain and rare minor breathing issues.

Another 6 months go by and we move to a new place in town. After a few weeks I suddenly start having stiffness and pain in my hands (especially right) and I started having breathing problems closer to the ones that earned me a trip to the ER. They run more tests; Xray,pulmonary function test and bone tosses (whatever it is they do) and they come to the conclusion that I have minor asthma and I need to stop using my mouse and keyboard so much. They also believed the asthma was allergy related because I had some symptoms of them in the morning and these problems seemed to pop up during peak allergy times. So they started giving me every type of allergy medication known to man, one seemed to help but within 3 days of taking it I started to feel very sick (the side effects of the drug).

I then pointed out that up until a few weeks before all this started I was able to walk all over town and never get tired, now a single flight of stairs leaves me feeling like I am going to die. I also pointed out that my keyboard/mouse use habits had not changed in almost a decade. I was ignored so I went to a new doctor.

(this is about 8 months ago) New doctor takes a look at me and says we need the test results from my last doctor so he doesn't have to run a bunch of tests I already had. He gives me a new medication for my migraine since nothing else is working. I asked him about an ingrown toenail that was giving me trouble and he sends me to a podiatrist (same day even). Podiatrist looks at my foot and wrote some stuff down (I assumed it was just about what toe he was about to cut on) and then fixed my toenail. After he got done I asked him about the foot pain I had been having from time to time. He says "Yeah that is what I was writing about. Next week when I check your nail we will see what we can do. Looks like you arthritis". I think WOOHOO finally something is getting done.

Go in next week and they take some xrays and tell me that my joints look great except for one. I have a bunion and it is restricting the movement of my large toe which is pulling on stuff and making it hurt. I had the option of dealing with it or surgery, I decided on surgery. My pain in my hands vanished at this point and so did my breathing problems so my new doctor said we will just keep an eye on it but he didn't want to treat me for things I wasn't having a problem with.

I have the surgery and everything goes well. In just a few weeks I had way more movement in my toe than I had before. I now started having problems with fluid in my ears, especially the right one. Doctor keeps an eye on it but there is no infection so no real risk of anything.

After some work my foot gets back to normal and I find that I still have pain in my feet. Now its more even and not anywhere are bad in the right foot. The Podiatrist says that I am flat footed and would probably benefit from custom orthotics and I should use a good pair of sandals while in the house to provide more support.

Summer hits and I am feeling pretty good. I still have some foot pain from time to time but since I am in school/at home dad I can stay off my feet if they start to hurt much. I start exercising and spending more time being active and all is well. Felt pretty good for about 2 or 3 months.For the 4th my wife and I biked around the city (about 1.5 hour trip) and I pulled my son in a cart and felt good after all that. I stopped my weight training (was using something like a total gym) for a few weeks but I kept up biking and just being every active. I was pretty happy and not to worried about my health as all seemed like I was fine. I did have a stiffness in my neck many mornings that caused a headache that seemed to go away generally with time or my trusty migraine meds. Didn't seem like that big of a deal because this had been going on for several years and I never really thought about it.

At the end of my three week weight training break I decide I better start again before I lose all my gains. I do the same exercise I had before and then the real fun started. Next day I am sore in a way I never was before. Every muscle I worked the day before is on fire, they are tight. I thought "man I must of really pushed harder than I thought I did". I do my usual stretching and relaxing I do with sore muscles but this time was different. Next day I still hurt and it continued with only minor relief in pain over the next week. I also had several muscles that seemed as if they just refused to relax and started having spasms all over the place.

So I go back to the doctor they run a BUNCH of tests and refer me to a Rheumatologist. The 30044534 tests they run all come back as normal as ever except for one. Something odd is up with my liver.... so back for my third ultrasound in 2 years so they can check every organ again. They also test me for hepatitis which made me feel real good. Again the blood tests say I am fine but the ultrasound says I have a fatty liver which is awesome because that means even more blood tests which of course say there is absolutely nothing wrong with me.

So now I have a slightly fatty liver that appeared by magic. To add to the fun this little attack of the magic disease that doesn't exist has added a bunch of new pains. I now have random pains in my left shoulder and knee. I also started having joints pop a lot more than they did before. My knees now randomly pop while walking and it is painful now(my knees started popping a few years ago after being bent for 10-15minutes but never hurt). I popped my ankle twice and my knee once the other day putting on a sock which was just awesome. My personal favorite is my tailbone pain I get from sitting in my computer and kitchen chairs for 30 minutes to an hour in the exact same way I have for years. Of course this can't be just a little pain it has to be the "OMG my tailbone just broke" type pain.

...and this is where I am today waiting for my rheumatologist visit in a few weeks. I have no idea what is wrong with me but every symptom, doctor, nurse and medical know-it-all say Lupus. As an added bonus after this was pointed out to me I remember that I have a second cousin I went to school with (few months apart in age) that was just diagnosed with Lupus and we share a second cousin who had lupus.

This is not a fun place to be. I have a very real chance that I have Lupus or some similar autoimmune problem that could change my life. I really shouldn't say could because at this point I am pretty sure no matter what the doctors tell me my life is changing. I am currently in school to be a physics teacher and I don't see how I could do the job at this point. I can't play with my son and nephews the way I used to without paying for it for days which is a bit depressing.

I was praised at every company I ever worked for. I was the guy that would work more hours, get more done and never miss a deadline. I have put in all nighters (23 hours was my longest) and done jobs in a fraction of the time other people had ever done it. I have made all other employees in the same position as me look bad.... and now I am facing the very real possibility that nearly every job I had ever thought of doing is now off limits to me. I also can't ever go back to any of the jobs I have done in the past, I would be lucky to last a day doing any of them.

To make matters worse I feel like I am lying. I feel like am making the pain up , or just saying it is everything worse than it really is. It leaves me feeling like a lowlife that just wants to live off of other people. And then I get the feeling I am suffering from denial.

I think my biggest fear is that I am going to go through what so many others have and spend years trying to get help. Would help if a test or an xray or something would show anything. Being a male does not help the issue. I may or may not have a disease that is hard to diagnose, tends to be different for everyone, rarely attacks men and loves to act like a million other problems.

I am not entirely sure what my point of this post was. Perhaps I just wanted to express my feelings to people who at least have an idea of what I am talking about. The disease may be different but its effects seem to be the same. I do have a question or two though...

How do you cope with feeling lazy?(if you feel that way) I was never one for housework before, now I have a lot of pain to add to my reasons for hating doing it. I just always feel like I am asking to much of my wife by being so useless all the time. I feel the need to just suffer and do the work, which is often exactly what I do.

Does my list of magical problems sound like lupus or some other disease to you? Or maybe several problems that are occur at the same time? I like to learn about these things because it can help in getting proper treatment. I have gotten treatments changed for several friends and family by taking the time that some doctors just refuse(or don't have) to look into the problem myself. It would be nice to hear from people that actually have lived this.

I wasn't asked to but I planned on making a giant list with every single little detail of last few years. Is this something I should do or will I just get a doctor that thinks I am a crazy person?

For any men: How do you deal with having a "womens disease"? I know that this is going to come up at some point. Especially for someone 6 foot tall with a large frame and deep voice. When people do stupid things I generally just remind myself that people are stupid but I think this may annoy me. That and "why are you letting your wife support you? Men need to support their family"...

How often are you treated like a faker out for sympathy? This happened to me with my foot surgery and made me actually hot. I was so angry I wanted to walk into the doctors office and have a discussion with the nurse. She questioned my use of my pain meds, the meds I requested because I didn't care for Vicodin the one time I had taken it before. Apparently she missed the part where I was taking my pills at a rate slower than I was allowed and the normal Vicodin called for more pills than that... off topic anyway...

How do you look for work while having a nice big "I can't do this" list? Mine keeps getting bigger with age, the migraines caused enough trouble to begin with.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted Yesterday 5:22 AM (GMT -6)   
You are not crazy. I reckon, with my personal experience, you have an autoimmune disease. I think you should definately be seen by a specialist that specializes in auto immune diseases. There are many diseases such as wegeners, wagners, sarcoidosis (sp), so on, that makes a fatty liver happen, as well as your other symptoms. As for your migraines, write down everything you eat and drink and when a migraine starts according to what you ate/drank. Look for common factors. Ie: my migraines trigger if i have too much coffee, soda, chocolate, so on.
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Rochetm
New Member


Date Joined Sep 2011
Total Posts : 6
   Posted Yesterday 8:38 AM (GMT -6)   
My migraine triggers seem to only be heat, light, and chemical smells. Tensing my neck muscles can lead to a headache that becomes a migraine. Things like food never seem to matter. Light is the only one a bet on causing a migraine. A single bright light for even a very short time is often all it takes.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted Yesterday 11:43 AM (GMT -6)   
Many times sensitivity to light accompanies Lupus, so your migraines maybe part of the 10,000 faces of Lupus...fun, fun.

How do you cope with feeling lazy? This is a hard issue to come to terms with. I, too, was an overachiever in terms of working harder, longer, and faster than most others. (I believe this caused unknown stress on my body for years, later contributing to lupus.) When I was first diagnosed my main, foremost issue was exhaustion. There isn't much worse than sleeping 18+ hours a day, getting nothing done, and not having any clue as to why. 10 years later I still have to deal with feeling lazy, despite having worked all day. Some days I can measure myself against my 'new normal', but some days I can't help but use the old measurements. For instance, this week I had 2-3 big things to do on Monday. It's Saturday, 2 of them are only 1/2 done, the other isn't even started - despite being busy all week, and exhausted by 5 pm.

Am I lazy? By the old measure of "I didn't get everything done", yeah, I'm lazy as the dickens. But by the new measure of "Did I work as much and as hard as I could tolerate without producing a flare?"...well, I was busy the whole time every day, not goofing off...so no, I wasn't lazy. How do I deal with keeping myself in the "not lazy" space -- it's hard. Everyday is different. Mostly a lot of self-forgiveness, and realizing day in & day out, that my body simply isn't what it once was.

This doesn't mean all is downhill. From dx in 2002 til now...it got worse, then it got better, then it got better again. Today I can think of doing 3 big things without going into a depressed spiral knowing it'll take weeks to get them done. Why? I've developed different ways of coping and thinking -- so your feet hurt & you don't think you can stand to teach -- who says you have to stand? Maybe it's a personal "rule", not how life actually is. Who says I have to type for 4 hours straight? Maybe it's a personal rule, and really I need to stop, walk around the house, and get a drink every 30-45 minutes. It's a matter of being more gentle with yourself. Maybe you can't straighten the house in the old 20-minute whirlwind, but you can make the effort to put each item in it's place as you use it, so a whirlwind isn't needed.

I wasn't asked to but I planned on making a giant list with every single little detail of last few years. Is this something I should do or will I just get a doctor that thinks I am a crazy person? Some doctors will think you are crazy, no matter what - that is their personal issue! In the "Lupus Resources" thread from my signature, you'll see some suggestions of the types of data your doctor might want & that you can gather before hand & take along.

I do suggest that you find a rheumy who is versed in auto-immune diseases - I'm not sure I agree with what some of your doctors have told you -- look at www.lupus.org, find the nearest chapter, then check with them to see what rheumies are active with them -- these are the folks interested in and most prepared to deal with auto-immune diseases.

Also, try not to suggest a diagnosis to the dr - I know you have family history of lupus, but try not to stress it too much -- I prefer to have the dr use HIS brain so that he can go by symptoms & blood work, not have his thinking narrowed by my suggestions. He is the expert, let's utilize his training & experience.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted Yesterday 12:36 PM (GMT -6)   
I'm an elementary school teacher just diagnosed this past summer. Before medication I saw my career start going down the toliet. Now I'm on my medications and as long as I follow my personal rules of coping most days are managable.
My boss installed UV protective filters for the fluorecent lighting in my classroom. When I'm tired or hurting I can sit down on my rolling office chair and teach with ease. The kids love it when I can get down on their eye level and teach them.
My time out of class is just that "out of class". I have three days off every week which I spend two of those days doing the very minimum. I spend one day running errands, but limit my time out to no more than four hours doing things.
I use sunscreen, spf protective clothing, hat and sunglasses for my outside times.
You can be hired as a teacher under the Americans with Disabilities Act if your adjustments are mild.
Joy

Rochetm
New Member


Date Joined Sep 2011
Total Posts : 6
   Posted Yesterday 1:33 PM (GMT -6)   
Not sure what my doctors said that you don't agree with unless your talking about telling me to "just not use my hands" or its normal with age. My new doctor who I actually like so far hasn't actually said much other than it sounds like you have an autoimmune disease and you need a specialist.

I replaced the lights in my house with fluorescent bulbs around the time I started having major issues but I don't know that they could be an issue. When I am feeling good lots of sun doesn't seem to bother me to much. When I am not feeling well sun does seem to have an effect on me but I don't care for any heat so it could just be that.

I could probably still teach but I would be required to be much more like the teachers I hated in school. I wanted to teach a hard science because I felt I could make it fun. Not sure that I can make physics very fun when I am stuck in a chair all the time. Also I am very tired and stiff in the morning, I don't think I will find a job teaching where I don't have to be up early.

I don't want to jump to conclusions but I also don't want to ignore whats happening to me either. I am looking at going into a profession known for long hours and stress. I should really be prepared for it not to work out very well.

sickinterval
Regular Member


Date Joined Sep 2011
Total Posts : 33
   Posted Yesterday 6:44 PM (GMT -6)   
It sucks to be sick. No matter the name the dr's give it, you know something in your body is not right. Teaching is a demanding job and you may come to the conclusion that you would rather spend your energy with your children instead of someone else's children. You may consider being a tutor or other education related job. Only you will know what you can handle. Some people with lupus have issues on and off. So finish your degree and internship and see how you feel. If you are in a good place with your health then take a teaching job. If later on in your career you have a flare maybe you could work part time as teacher. I work for the school system and once you are in and your a good teacher you would be surprised how flexible teaching can be. (We take that ADA thing seriously.)

As for the lazy: On those days I try and do something for 15 minutes every hour. You would be surprised how this pace can get things done around the home. (Stay out of the heat!)

As far as the man issue: What matters most is your family!! A man that takes care of his kids is very attractive to women and I am sure your wife thinks the same thing. In the end, love and family is all there really is.

Good luck on your quest for answers. I am on the path and it seems true answers are hard to find.

LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 9/27/2011 9:15 PM (GMT -6)   
Hi,

I noticed one word in your post that really stood out to me and that is the word "random".

I too suffered and well still do suffer from random pains. One day I will feel it shoot up my leg, then my arm, then my foot it comes and goes. I also suffered from heart pains and other issues such as inflamed lymph nodes.

Also please make a list and keep an active journal. It really does help the process of being diagnosed. I started a journal and it helped me get an appt with my Rhuemy who I love.

Also don't see it as dealing with feeling lazy what you are actually feeling is the feeling of being fatigued.

And lastly your not crazy! You are not imagining this. I understand why you feel that way as the pains are so random and one day you can feel find while other days not so hot. I sometimes though I imagined it too but then I realized at times when I wasn't even focusing on the possibility of being sick I would get pains. I realized I couldn't imagine large lymph nodes or imagine a positive ana ect. Its real and I have to deal with it.

Rochetm
New Member


Date Joined Sep 2011
Total Posts : 6
   Posted 10/11/2011 2:51 AM (GMT -6)   
Well my Doctor visit went exactly how I planned. It took two months to get to him which was just enough time for my swelling in my hands to vanish. Swelling left about 24 hours before my visit.

Asked me 4000 questions. Poked, squeezed and twisted every join in my body then looked up at me and said "I don't know.". Was very happy to hear yet another doctor say that. Luckily he did not say "Just don't do things that hurt." like one of my previous doctors. Instead he sent me for a ton of blood tests and for some more Xrays.

So now the fun of driving all over the state that I can have a label beyond "I feel like crap" disease.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 10/11/2011 10:24 AM (GMT -6)   
Rochetm, well your rheumy appt went as well as mine then! I already have a number of auto immune disease and have had for many years and well aware that my immune system really doesn't like me. But until May this year have been able to work full time and be top of my peers out of 3500 people and it is really hard to explain to my boss how much pain I'm in. The Rheumy made me feel like I was wasting his time, all I can say is Thank God for my GP, I saw her straight after I saw the Rheumy, told her what he said and the fact I wouldn't get any results for 3 months and she changed all my pain meds immediately. I have this problem every time I see a new doctor or specialist, my body doesn't act or show thtings up in blood tests like they say it should do. For example I had huge abscess, raging sceptacemia and peritonitis and blood test showed no inflammation and I had no temperature. Trouble is this Rheumy guy I saw told me blood tests are all, if they come back negative then I don't have something, so with my body I'm not holding out much hope of it co-operating by producing a positive result. I so can't wait for my follow up appt in 3 months time to be told there is absolutelly nothing wrong with you and the fact you are in agony, hair falling out, so tired it has taken my ages to type this as keep spelling stuff all back to front is not my problem and go away and get on with it! Oh joy!.

Hope you can find some answers soon, I think that is the thing everyone strives for, once you know then you can do something.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, azathioprine, codeine, immodium, simethicone.

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 10/11/2011 10:56 AM (GMT -6)   
Hey Roch! its so hard when people look at you like youre whining or making it all up.I was a meatcutter at a major grocery chain,had a total meltdown at work and could not return.They said fibro and chronic fatigue syndrome.There are only a couple people that will talk to me from there,like Im contagious er something..and I worked there 10 years and was one of their best.Never even got a card.Anyway,I used to workout daily,twice a day,was actually training for competition at one point,Was very athletic,biked,rollerbladed etc.They put me on gabapentin and then lyrica and Iput on 50 pounds in 3 months!16 years of training down the toilet.The new docs who have seen me dont know how I was before and tell me "you have to excerise"Know kiddin.They think Im just like you say "lazy".Now finally they put me on plaquenil..its helping Im off the lyrica and such,and some weight is dissapating.All the lupus tests come back positive...but I dont have pnemonia and Im not skinny...but shes actually leaning towards lupus now.It will be a struggle,I know I look at pics and want to cry remembering how I was before,but I always think,it could be alot worse.Even my sis and bros dont really talk to me now but hey,ya sure know who your friends are.Oh,get them to send you to a sleep clinic as sleep disorders can make you fall apart,Im on a machine now.Let us know what happens,theres lotsa support here!

Rochetm
New Member


Date Joined Sep 2011
Total Posts : 6
   Posted 10/12/2011 2:12 AM (GMT -6)   
shoeless said...
Hey Roch! its so hard when people look at you like youre whining or making it all up.I was a meatcutter at a major grocery chain,had a total meltdown at work and could not return.They said fibro and chronic fatigue syndrome.There are only a couple people that will talk to me from there,like Im contagious er something..and I worked there 10 years and was one of their best.Never even got a card.Anyway,I used to workout daily,twice a day,was actually training for competition at one point,Was very athletic,biked,rollerbladed etc.They put me on gabapentin and then lyrica and Iput on 50 pounds in 3 months!16 years of training down the toilet.The new docs who have seen me dont know how I was before and tell me "you have to excerise"Know kiddin.They think Im just like you say "lazy".Now finally they put me on plaquenil..its helping Im off the lyrica and such,and some weight is dissapating.All the lupus tests come back positive...but I dont have pnemonia and Im not skinny...but shes actually leaning towards lupus now.It will be a struggle,I know I look at pics and want to cry remembering how I was before,but I always think,it could be alot worse.Even my sis and bros dont really talk to me now but hey,ya sure know who your friends are.Oh,get them to send you to a sleep clinic as sleep disorders can make you fall apart,Im on a machine now.Let us know what happens,theres lotsa support here!


I think I am the only one that thinks I am making it all up. :(

I find it hard to believe I could be just fine a few years ago and have so much trouble now. Especially since my family has no history of anything like this.

Rochetm
New Member


Date Joined Sep 2011
Total Posts : 6
   Posted 10/30/2011 2:24 AM (GMT -6)   
Not happy but could be soon.

Had to go back to my new doctor to have my lungs checked. Before I got there a family member asked me if I had my thyroid checked. I said it had to have been checked, I have had more tests run on me then anyone I have ever met. So I ask my new doctor and he says "I can't believe that your last doctor didn't test it and then I didn't either but I'll check."

What do you know they didn't check. So they did blood work and my thyroid is off, not much but it is off. So now I have to wait a few weeks to go back and get another test to see what is up.

Thyroid issues explain every single problem I have had (and some I wasn't thinking about) in the last 5 years. So I may have gone through hell for over 2 years for a common problem... we will see.

honeypie129
New Member


Date Joined Nov 2011
Total Posts : 2
   Posted 11/2/2011 3:58 PM (GMT -6)   
Hi:

I too am a new member here, and when I read your post I was thinking I know exactly what you mean, about everything you've gone through.

I have been sick for the past 3-4 years with a variety of symptoms, some of them so unbelievable that I never told any doctor, but my daughters are witnesses.

My symptoms have progresses slowly. Even though I know I'm sick, when I see a doctor I don't look sick. Like you, my blood tests were normal, but there would always be something off, usually in my serum protein. I developed dry mouth, and then dry eyes. I went to see an opthamologist for something completely different (one of those crazy symptoms) and found out that my eyes were severely dry, and that I also had Blepheritis. I was on doxycycline for 4 months for that. However, when I was told I had dry eyes, I told the doctor about my dry mouth. She suggested that it could be Sjogren's syndrome. hmmm......I said.

After this, I started to have joint pain and swelling in my fingers. First it was one finger on one hand, then the same finger on the other hand, until all my joints were involved, not just my hands, but my feet also, and my wrists, knees, ankles - just about everything. I kept going to rheumatologists, and every one of them has told me there's nothing wrong - I have Fibromyalgia, despite my most recent bloodwork, which showed an elevated CRP, antibodies to Scleroderma, low hemaglobin and low hemacrotit, and low normal RBC.

The doctor who ordered the bloodwork tried to explain everything away. So I went to another one - this doctor was highly regarded, and she doesn't treat Fibromyalgia, so I thought I'll finally get treated like a real patient. Well, she examines me, then tells me I don't have any symptoms of Scleroderma, so it's probably a false positive, but she didn't address my anemia, or the frequent periods where I get so sick I can't lift my head off my pillow. She told me I have UCTD. She put me on something for my dry mouth, which is helping. I'm also taking Plaquenil from the other doctor, which is helping.

Then, I see my primary doctor, who totally believes me, and she's reading a copy of the last doctor's report (the highly regarded one). This doctor told my doctor that she couldn't find anything wrong, other than inflammation in my right leg, and said that I have Fibromyalgia. I was livid.

It takes years to find a good doctor, a doctor who is willing to go the distance with you. I have lost all faith in rheumatologists. If you don't walk in with obvious, advanced signs, they don't want to bother with you.

I'm sorry this is so long; I should write a book :-)

honeypie129
New Member


Date Joined Nov 2011
Total Posts : 2
   Posted 11/2/2011 4:06 PM (GMT -6)   
Rochetm said...
Well my Doctor visit went exactly how I planned. It took two months to get to him which was just enough time for my swelling in my hands to vanish. Swelling left about 24 hours before my visit.

Asked me 4000 questions. Poked, squeezed and twisted every join in my body then looked up at me and said "I don't know.". Was very happy to hear yet another doctor say that. Luckily he did not say "Just don't do things that hurt." like one of my previous doctors. Instead he sent me for a ton of blood tests and for some more Xrays.

So now the fun of driving all over the state that I can have a label beyond "I feel like crap" disease.


Hi Rochetm:

Same thing happened to me. Nothing was swollen the day I saw the dr., but was the day before. That "feel like crap disease" is very common.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/2/2011 5:36 PM (GMT -6)   
honeypie, take pictures of the swollen joints and rashes to show the doctor. It helped my doctor understand my problems that vanish when it's time to see him.
Joy

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 11/2/2011 7:55 PM (GMT -6)   
Honeypie,

UCTD is an inclusive diagnosis which basically means you have some sort of auto-immune symptoms, but that they don't know exactly what's going on yet. If that was her comment, she should be able to treat your symptoms.

Of course, telling your PC Doc something totally different (Fibro) is crazy!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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