Feel as if i am going crazy with lack of diagnoses - when to give up?

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sarahMc
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/21/2012 11:36 AM (GMT -6)   
I know diagnoses with auto immune can take an incredibly long time but does anybody ever begin to doubt themself or feel they are going crazy during this process? Last year I had unexplained abdominal pain and ended up in ER. Apart from a cat scan only seeing slightly enlarged ovaries the ultrasound didn't show anything and I was sent on my merry way. Shortly after this my hair started to falling out and thinning but seemed to calm down for a few months. I experienced joint pain intermittently and swollen lymph glands but tried to ignore them as much as possible due to very basic health insurance. I had always had problems with circulation in my feet - very cold regardless of room temp, sore and changing colurs (purple white or blue) but again I tried to ignore them. Until April of this year when everything seemed to hit at once.

I woke up one morning and my whole body was stiff sore and hypersensitive skin and I thought it may be some infection due to how quickly everything had occurred and the severity (I had been feeling ill the week before with severe fatigue). Things progressed quite rapidly to severe chest pain and difficulty breathing, skin changes - itchy inflammed skin, water blisters appearing and disappearing, severe hair loss (front of head and back and generally thinning all over to where I can no longer wear my hair up as you can see my scalp). I was first treated for strep (despite no sore throat at the time) due to rising ASO levels and given Augmentin. When the chest pain started I was then treated for suspected Rheumatic fever and given prednisone and penicillen injection and advised to see a Rheum asap. My liver enzymes had also risen quite high to (AST - 107 normal level 10-30 and AST 168 normal level 6-40).

They carried out the auto immune blood work which came back fine apart from very elevated neutrophils (maybe the prednisone)? Chest X ray and echo cardiogram where also all fine. The Rheum basically dismissed me and sent me to an infectious disease specialist who ruled out everything under the sun although I had antibodies for M pneuomia and mono but the blood work cant tell me how recent this was and he never met with me after the blood work his receptionist just phone to say everything was fine on the blood work.

My rheum did take me of prednisone to see what would happen - what happened was the joint pain came back and the skin problems started, petechia in skin, unexplained bruises (which I have had for several months) hair started falling out, and swollen lymph nodes came back in neck. I have spent the past 3 months sick - constantly feeling as if I am coming down with something that never materializes. I spent 2 months of this house ridden due to dizziness and difficulty breathing. I am about to start yet another round of anti-biotics for my lymph swollen lymph nodes (2 months worth of antibiotics now)! Although my new PCP does think this seems like an auto immune, as my blood work is negative he wants me to have a second opinion from another Rheum and Derm so has given me the antibiotics for now. At least this new PCP seems to be listening to me and I wish I had had a PCP from the beginning (I am new to the area so had used a walk in center at the start of this in April).

What is driving me crazy is how sudden some of these symptoms appear and disappear making it hard for me to show the doctors who give me the impression they feel I am wasting their time! This is apart from the fatigue headaches which are continuous but hard to prove! The derm did see the mottled skin and said it looked like Livedo reticularis but as he was doing a cancer check for moles, I am not sure he has put this in his report. He ruled out cancer from a biopsy on one of the strange sores I have on my forehead which has been there for 3 years, becomes itchy, raised and pitted inside before crusting over and then asymptomatic for a few weeks. However he hasn't tested this for lupus. He also ruled out psoriases for the hair loss but didnt offer any suggestion as to the possible cause as he knew I was having auto immune looked into my by PCP.

So here I am pretty much at the stage of my PCP telling me to get a second opinion from both a Rheum and Derm. I am finding it difficulty to not want to give up and just hide at home and hope everything goes away. Without positive blood work and evidence of what is going on I feel as if I am often patronized in the PCP office visits and find myself doubting myself. Fortunately I started to keep pictures of some of the rashes, hair loss etc and I hope this proves useful in the future. I rarely get ill and have only been bed ridden once in the past for no longer that 4 days sue to swine flu so being ill for so long is unusual. I also have a habit of ignoring little things such as the joint pain and cold feet etc until things get so bad I cant anymore!

In short I just dont trust my health to he doctors at the moment and often wonder if I am over-reacting. I keep wondering if this is just a really bad strep throat that will go away! Then I keep wondering why antiobiotics aren't reducing my lymph glands, why my hair is falling out and why my liver enzymes where so high. More importantly I am concerned the chest pain will come back.

Seeing these different consultants has made me realize medicine really is an art rather than a science at times. How each consultant has contradicted the previous ones diagnoses has amazed me. Between them they have taken enough blood to supply a blood bank and still no answer. They have tried to diagnose fibromyalgia despite it not explaining half of my symptoms, the Rheum diagnosed psorises to which the Derm said there was absolutely none. The PCP suggested Rheumatic fever to which the Rheum said no....its a crazy journey and I feel as if I am going mad!

My friend is a doctor (lives in another state) and he is strongly advising me to continue pushing for a diagnoses as he feels if its not infection it sounds like SLE, Sjogrens or RA. My trust in his opinion is the only thing that is keeping me pursuing this. My heart goes out to people who have taken years to receive a diagnoses and had to spend their time fighting to be heard when they should be using their energy to try and get better.

I am sorry this is a moan and I know I have not been going through this nearly half as long as some other members on the board but let me just say I feel for those of you who have had similar experiences. Off to take another antibiotic!

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 6/21/2012 1:34 PM (GMT -6)   
Hi SarahMc,
Glad you found the forum, and welcome - just sorry for all that you're going through!  Your combined symptoms and autoimmune symptoms in general create a bit of a maze, and it does seem to take a good while to come up with concrete answers.  The way they come and go is common as well. 
 
I would stick with the advice of your PCP and doctor friend, and persist in getting second opinions.  Be sure to get copies of all your lab results for yourself.  Things tend to change over time.  Getting pictures of your rashes, swelling, etc. is a good thing to do.  So often by the time you get into the doc, your visible symptoms have disappeared.  It is a crazy journey, as you said. 
 
Don't be afraid to ask questions of your docs, and clarify their observations.  So many of us can relate to that feeling of wanting to hide out and hope it goes away - the pain and fatigue make it harder to advocate for yourself.  Take a friend or family member with you to your appointments if it helps. 
 
Hang in there - and while this is ongoing, be sure to take good care of yourself, eating well, plenty of rest, lower both physical and emotional stress levels if possible, limit or prevent sun exposure.   Good luck and keep us posted!
 
Lucy
 

sarahMc
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/21/2012 1:48 PM (GMT -6)   
Thanks for your email Lucy - yes there's an odd list of things going on. I will definitely keep a list and continue with trying to get a second opinion. I am trying to time things so I don't have blood tests too close to each other (I have had one nearly every week for the last month)! As I am also on so many anti-biotics I want to make sure my blood tests give a true picture of my health so I may wait until I have finished this third set before having my blood tests for auto immune re-done.

It is hard trying to advocate and be ill - but I agree taking somebody with you to the appointment is a great idea. I am used to being the strong one advocating for others so it can get frustrating not being able to do it for myself. I will definitely keep you posted and thank you again.

pbjsammich
Regular Member


Date Joined Jun 2012
Total Posts : 66
   Posted 6/21/2012 5:09 PM (GMT -6)   
Hello, Sorry about what's all going on with you. I really hope you find some relief and a diagnosis. I do know the stress of not knowing what is going on with your health does not help matters. It is a very good thing you have started keeping a log of symptoms. I would also suggest you add a journal of symptoms, when they come and go(if ever). Every little thing like that will help you and your doc find out what is pestering you. After a period you might even notice a pattern. Also note when you feel good. That helps you keep pressing on. Don't give up. It is your life and health, don't give up on yourself.
It is a long frustrating journey, but I have found on this site, there are some nice people willing to let you know you aren't alone.
wink  
RA SLE
Acid Reflux/GERD

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/21/2012 8:16 PM (GMT -6)   
Sometimes we can find rheumies who will at least treat the symptoms, since actual diagnosis can be so tricky sometimes. The body is an adaptive and complex thing, that's for sure!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

sarahMc
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/22/2012 4:03 AM (GMT -6)   
Thank you again for your posts. Your have all made some great points and I really appreciate you replies. I have felt incredibly alone during this and as I am also new to the country with no family around its been very difficult for me. I agree that keeping a note of when you feel good is equally as important. I actually just looked over some of my dated journals and noticed last week wasn't too bad a week but am noticing the things seems to start again after spending time outside (I went to a birthday party at the weekend and was in the garden for a few hours although not always in the direct sun) After this is seems some symptoms started again. I also don't seem to be reacting well to the tetracylcine as my joint pain has come back two fold and my abdominal pain - however its hard to tell what came first the chicken or the egg - as I was already feeling ill for my doctor to prescribe more antibiotics but I also wonder if they have caused things to get worse so quickly. Its so hard trying to second guess all he time!

I think that finding a Rheum to treat the symptoms at this stage rather than seek for a diagnosis is a very good idea. My last Rheumy prescribed gabapentin and my PCP has suggested Cymbalta for the joint pain and to help me sleep, and hydrocholrine cream for hair loss. I have been a bit stubborn in taking these prefering to know what is going on before loading myself with medication but I am now realizing that symptoms don't always fit nicely into boxes and with one easy medication to treat it (I guess I have been very naive when it comes to health issues)! I keep wondering if we are missing something and this could be a strep complication but nobody has mentioned this even the infectious disease doctor so again I have to try and stop stressing about labeling this and concentrate on alleviating symptoms at this stage until blood work shows something or another symptom appear which may give us a clue (very House)!

There is a good Rheum in my area but one whom I think has a huge waiting list. I will be sending my documents to him to review to see if he will accept me as a patient. Then if not I think I may look for one associated with a teaching hospital. I would be interested in hearing how long it took some members here to finally have a diagnosis and how long they were treated for symptoms before their blood pointed to an auto immune. Although my PCP thinks my symptoms point towards this I have noticed other members have had other clues in their blood work, if not positive ANA, that RA factor or ESR which I dont have. My blood work seems to be rising ASO and liver enzymes, elevated MCH (every blood test past several years) and Vitamin D deficient last year and B12 deficient in the past. There have been other odd things such as borderline low RBC< elevated Neutrophils and high albumin, low CO2 and urea nitrogen. I have been taking vitamin D and B12 for the past year to address this.

Thank you all again for your replies

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/22/2012 2:54 PM (GMT -6)   
I started feeling bad January 2009. In January 2011 I was feeling so bad I couldn't stand it. Went to Allergist with strange rash. He did blood tests found Lupus and sent me to a rhuemy who confirmed lupus in April 2011.
Joy

sarahMc
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/23/2012 9:27 AM (GMT -6)   
Hi Joy, thank you for your post. I am so glad you finally found out what was happening but sorry it took so long.

pbjsammich
Regular Member


Date Joined Jun 2012
Total Posts : 66
   Posted 6/23/2012 2:33 PM (GMT -6)   
I woke up with my symptoms one morning. I never had any symptoms before then. Nothing at all. That was February 2011. I was officially diagnosed in November 2011. My journey to the diagnosis is a rather unusual one compared to others-I am in the military. Well, was. I will be retiring in a few months.
How I came to my rhuemie was a messed up knee that still has yet to be tended to.lol The ortho guy referred me out to the rhuemie. That took a mess of phone calls from one dedicated lady in the ortho guy's office. apparently the good docs pick and choose patients and I was fortunate enough to be taken in by him. I did have a 3 month wait to get in but the doc is good and very thorough. He's big on labs.lol he also listens to your symptoms and I have been told by the techs in his office that I am his special case. He has to tailor my care due to my size and my symptoms. (they are advancing)
I hope you find a doc that is willing to sit and talk to YOU as a person.
I would suggest reading all you can about your symptoms. Understanding is half the battle.
As I used to tell my troops-" knowledge is a good thing". lol only a few, got the grammer. ;)
pbjsammich :p
RA SLE
Acid Reflux/GERD

sarahMc
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/24/2012 7:22 AM (GMT -6)   
pbjsammich - thank you for sharing your story. Finding the right Rheum who is willing to listen seems to be the common theme here. It does sadden me that getting a correct diagnosis is luck of the draw, but I am glad that you found the right group of doctors willing to treat you like an individual and not a walking lab test! I agree knowledge is definitely important to enable you to advocate for yourself. After seeing my first rheum who told me I couldn't possibly have any auto-immune as all my auto immune bloods where normal, I walked out feeling like a lost cause. This was particularly as they couldn't offer an alternative explanation for my symptoms.

However the more I read about the difficulty with diagnosis and how particularly in the early stages blood tests may not necessarily show anything, I decided to continue to follow up and not despair. Finding a good PCP who looks at everything as a whole rather than rely solely of lab tests, helped me too. Similarly forums such as this - listening to others who are actually going through similar health problems has proved invaluable.

I am glad you have have found a good Rheum to tailor your treatment. After spending your career leading troops and working in such an admirable profession, it is about time you yourself receive the best care and support, enabling you to enjoy your retirement. I really wish you all the best.

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 6/24/2012 1:01 PM (GMT -6)   
you never give up... You know your body better than anyone. You are your own avocate!! Fight for yourself, its not easy but worth it in the long run.
Amy
Lupus Moderater


dialysis from lupus nephritis

pbjsammich
Regular Member


Date Joined Jun 2012
Total Posts : 66
   Posted 6/24/2012 7:24 PM (GMT -6)   
Hello, and Thank You for the well wishes. I'm not sure how retirement life will be now that I have these two things. I call them things because they do not deserve any nice desription. Well anything that I can post here.
Sometimes you just have to go stand alone in a room take a deep breath and keep going forward. I found I had to do that alot this past year. You know something is not right with your body, now it's just finding a doctor that will help you figure it out. Ask around, sometimes asking the nurses and techs who they go to and if they have any recommendations. I will admit, the ortho doc I had was a huge boob. He was highly stuck on himeself and called me old and told me in front of my mom that I was just breaking down and best get used to it. I was too drugged to say anything of any value except for "you try using this body for an hour and see how you feel". In which the pompous boob walked out of the exam room and a tech came in and finished the appt. The only nice people were the receptionist, the tech and the insurance lady that helped find my rhuemy. yup with anything, there's the good, and the bad of docs....good luck in your hunt! :)
pbjsammich :p
RA SLE
Acid Reflux/GERD
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