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so frustrated

Posted , 6 users are following.

kkylie
kkylie

Ive had lots of issues over the last 6yrs. Pain all over my body, numbness and tingling, headaches, fatigue, weight loss and gain etc. I was diagnosed with fibromyalgia and hypermobility syndrome in July and referred to physio for some help with pain, only to be sent back to the doctors for more tests as he thought there was something else underlying that had been missed. Now im waiting yet again to see an osteopath and have an MRI done. What are they checking for? Im so frustrated and upset about the whole process its really taking its toll on me, has anyone else experienced this sort of thing? 

5 likes, 129 replies

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  • frustrated61
    frustrated61 kkylie

    Posted

    Hi Kkylie ~

    I hear your frustration.  Your symptoms can be a possibility of several issues.  It sounds like they are checking for any other of the auto immune diseases show symptoms you are experiencing.  I will say, if you haven't had any relief from the treatment they have you on, I'd demand they tell you what they are doing.  It could be just a ruse to make you feel like they are busy when they really do not know what to test for.  That sounds harsh but it does happen. 

    What is the MRI for?  Head, body etc??  The process of elimination can be overwhelming so try to be paitent but not so paitent you become complacent (which they may be hoping for).  I'm not cynical regarding the health system but I am experienced in that if you don't actually see the MD and see his assistant, they just may be trying to show how well they take care of his paitents.  I don't know, really.

    If it were me, I'd call and ask to have your call returned.  don't let them talk you into antoher appt until they answer your questions on the phone.

    I wish you well

    Frustrated

    • frustrated61
      frustrated61

      Posted

      in addition:

      To show the doctor how well they take care of you...at your expense, literally.  Also, how did you like the physio experience with pain.  I've done that too and for me, having pulmonary sarcoidosis, I couldn't do the breathing it triggered me to cough. 

      Please let us know how you're doing and what has, if anything, changed since your last visit to the GP....If you are seeing the GP's assistant, ask to see the doctor instead.  You should and deserve the best treatment as provided!

      Good luck, Kkylie

      Frustrated

    • kkylie
      kkylie frustrated61

      Posted

      Thank you for replying frustrated61.

      Physio didnt even start! He assessed my upper body one week, then my lower body the next and said that Id basically been not checked fully. He said that fibro was probable and the hms was correct but to an extent as he didnt think these conditions were causing the sort of wide spread pain I have been experiencing. He was very good though and spoke to my GP and a specialist colleague of his to advise him on how to move me forward. My GP then took me in for more blood tests for the autoimmune system which came back untested! They said that they needed more proof of autoimmune disorder other than 'aching joints' meaning he was very illusive on the reasons for testing when he sent them off. Then he said he wanted me to go for an MRI but couldnt refer me himself, so he would have me see an osteopathologist with the recommendation of going for an MRI. 

      Sorry for the length of the post, these things are never easy to explain without going into every detail! Are they checking for MS do you think? Sometimes I ask myself if its all in my head, because no one seems to be able to figure me out....... Its really getting me down :-( 

    • frustrated61
      frustrated61 kkylie

      Posted

      It's not a long post, shessh! you should see some of mine! lol  Anyway, did the send the blood work out to check the Anti-Nuclear Antibody (ANA)? to see what level you were at?  If you're not sure you could ask them this question because, like I've always said, we have to be our own advocates to make sure they are doing what they claim they are doing.  The medical field is a science.  As with everything there is room for error.  The checks and balances sometimes go in favor of the doctor because the paitent gives up or worse, passes.

      I had a gamut of tests after it was determined I was auto immune by the ANA test results.  It is a generic testing for anyone who a doctor suspects has an autoimmune problem...ie: systemic lupus, sjogren's, sarcoidosis etc; there are presently 80 known autoimmune diseases.

      You could also call and have someone return your call letting you know what you ANA results were and when they tell you, make them tell you what it means.  That excuse about it not having enough proof of an autoimmune disorder, all the doctor's order at first is a broad range ANA test, plain and simple!

      Good luck Kylie!  let us know how you're doing, please?!

      Warm regards,

      Frustrated

    • frustrated61
      frustrated61

      Posted

      Kylie ~

      To save time, tell the receptionist that you'd like the doctor to phone you regarding the results of your ANA tests.  That way the doctor doesn't phone you then say, I'll get back with you. And yet another wait.  Nip it in the bud before they can do this to you!

      Good luck

      Frustrated

  • georgeGG
    georgeGG kkylie

    Posted

    Hi kkylie, 

    I am so sorry you are having such a bad time and so may frustrations to add to your physical problems. I do not believe in 'its all in your head' or in 'it's some space age virus' which was my intrduction to ten years of prescribed misery and to absolutely no benefit to me but a couple of  long term eye cateracts. Oh! and I don't believe in Father Christmas either. You mention a worry about MS. I lost my mother to MS. So I know that is a troubling worry and it is very difficult to diagnose. Have you tried the MS Society web site?

    • frustrated61
      frustrated61 georgeGG

      Posted

      George,

      Great suggestions!!  Kylie, you have us on your side and we will try to help as best we can! (speaking for me, and assuming for George ) rolleyes

      Frustrated <3>

  • georgeGG
    georgeGG kkylie

    Posted

    Yes frustrated, I am with you in rooting for Kkylie. I am also a pulminry sacoidosis chap. It was treated for ten years to my very great misery and without improvement to the symtoms I complained of. Only when I had both refused further treatment and moved to another district some 20 miles away I very slowly rcovered. I now feel vindicated that the cause had been chemical polution in the former house (lindane) plus polution from a very large petro chemical complex (recurrent agrevation of symptoms every Friday evening ) and a notorious recycling plant ( later forcibly shut down ) for 'disposal' of dangerous waste. I had lived downwind of these two industrial sites. The consultant refused to consider the possibility of chemical polution being the cause of my symptoms. The effect of his unvaried treatment was worse than my symptoms from the first pill. The consultant's mind was so tight closed that when I told him I would not take any more of his pills, he replied "Is that fair to me?" Even today, some 30 years on, I am staggered that he should say such a thing. Anyway I memtion this very briefly in support of frustrated's assertion that it is imporant that we must actively be our own 'doctor' in conjunction with our medical experts.
    • frustrated61
      frustrated61 georgeGG

      Posted

      Hi George!

      You said your pulmonary sarcoid is in remission?  Gosh, reading your post makes me so upset that doctors feel they are the GODS of medicine, when in fact the scientists are and you rarely hear of their jobs/discoveries.  My good friend's daughter is a scientist and tests a gamut of areas.  Sometime a new drug and sometimes a new disease and what meds would work well with it!

      Anyway, back to your treatment, that is just plain ignorance on the GP's part to not even consider the chemical plants you've been exposed to for many years.  Some doctors see a possible lawsuit and that they would be called to deposition and that time is wayyy more valuable than to help others.  I highly suspect there are other's that have some kind of symptoms and/or passed from exposure. 

      The reason I say this is because years ago, our neighborhood decided to get our street paved as opposed to compacted dirt/stone road.  The company had to dig as far down as 10 ft or more.  The fumes alone from that seemed toxic!  I called to see if someone would check the air quality to see what the levels were. The said, sure but didn't. 

      In a short time one of our special neighbors who stood out on his porch in rain, sleet, snow and heat and smile at all of us and wave.  He passed away that exact year the street was being completed. coincidence? perhaps.  However, the little man across from us just keeled over in his driveway that exact same time frame, another coincidence? hmm.  Then many of the neighbors (can't recall the exact amount) they developed asthma, I ask again, another coincidence?  Oh heck no!! It's obvious there were hazardous conditions present. 

      The city backstroked and put blame on the State. This went on for years until people either moved or passed away.

       

      My family, of the four, three developed asthma.  My husband already had asthma so in all, we all have asthma, the girls have since been okay w/o an inhaler but my husband, he almost passed because his asthma was so bad all he did was cough, etc.  I've often wondered when I had the biopsy of the lungs/lymph nodes to determine if it was cancer or sarcoidosis, if that project was really to blame for the onset of my lung condition!

      It's awful how people treat people.  And one wonders why our world is in the turmoil we are currently in.  Again, I admire the fact that you were pro-active with your health and did something about it.  May I call you Dr. George wink  lol wow, long post!

      Anyway, be well and thank you for your response!

      Frustrated

       

    • georgeGG
      georgeGG frustrated61

      Posted

      O o o o Frustrated, first let me thank for your LOL. We come, I think,  to this forum not just for information but for TLC from our fellows in adversity. What dismays - saddens me is that you seem to have no difficulty in believing my account and I, certainly, have no difficulty in believing yours. Yes, it is so important always to be our own only executive doctor, all the experts are our advisors. I paid very dearly in the University of Hard Knocks to qualify. Would that everyone learned that lesson more cheaply. Yet even against moderate sized business, let alone big business, we are so helpless. And so easily we can be swept aside by professional hubris and relegated to a symptom to be treated. Well let us not waste time on what we cannot change and excel in doing what we can with sensitivity and courage. With PCa it is definitely up to us to make the best informed choice that we can from the remedies actually available to us. We are offered choices and have to choose and take the responsibility on our own slim shoulders. We MUST educate ourselves and before we come to the first, the biggest and most far reaching decision. What will be our first course of treatment. It is our one and only opportunity for a cure, IF it is not already too late and we are pitched into palliative care at first diagnosis.

      As to sarcoidosis, that was proved by biopsy decades ago. The irritating fact is that sarcoidosis has never given me any trouble other than set the consultant off on a wild goose chase. I smiled at the Dr George ☺️ but I in ignorance kept the two rudimentary principles that that consultant broke.1)  IF THE TREATMENT IS NOT DOING ANY GOOD, STOP IT.   2) IF YOU DO NOT KNOW WHAT TO DO, DO NOTHING. Then I come to PCa and I have to scrap those principles and agree willingly to the most aggressive and extensive treatment I am offered and support it with major, possibly excessive, lifestyle changes at home. It will not be through lack of commitment and determination of my wife and I  that the medical treatment does not yield a cure. 

    • frustrated61
      frustrated61 georgeGG

      Posted

      George ~

      Your posts are just delightful. Taking into account that you are not well your posts show nothing but positivity.  That is key in any situation.  You are not only healing yourself but you're sharing it with others.  Thank you for that!! 

      I just received a call that my daughter is going in for a C-section so I have to scoot but will add on to this later today.!

      Be well and stay positive!

      Frustrated

    • georgeGG
      georgeGG frustrated61

      Posted

      Frustrated, that is delightful news indeed. I do hope we may rejoice with you.

      Thank you for the kind words. The hormone treatment sets a low, sad undercurrent. My wife is a great antidote so that I rise above the false hormone induced emotion. And the forum. reading and writing are both very helpful for me and keeps my normal cheerfulnes active. My wife has been visiting family and will be back tomorrow afternoon. One son who had been staying for 10 days left this morning. Without the forum the sad might prevail for a few hours. 

      I look forward to learning your new news. You must be so excited. I too will rejoice with you and the sad will be squished.

    • frustrated61
      frustrated61 georgeGG

      Posted

      Hi George~

      We have a new baby boy, 7lb 12 oz 22is long.  He's precious! 

      I wanted to say that I couldn't agree with you more with regards to writing and reading in the forums.  I mean let's face it, we've "walked the walk" and have a lot to enter into this place.  I'm grateful for it!  I love how you mentioned your wife being your antidote for you.  I hear you! My husband loves to make me laugh. His usual go to is he'll get my pills (not always, but Im working on that smile  But he'll do his silly little dance with a glass of water and sing the song by Pink, hold your glass up!  omgosh, he'd die if he saw this!

      I'm feeling "squished " myself!  the news is still there but you're right, it's just not that darned important!  This child put me back where I belong, in perspective with the important loves in life.  Oddly, when I was first dx'd and had that first auto accident in 2004, my first granddaugther was born.  My eldest has 4 little sweeties and for no other reason but to help me heal, I believe they were sent here to assist me.  I mean, I get bad news in 2004 and  1st one came, 2005, the second bad news, and a new baby, 2007, more surgeries, one more came and this past week, and our new one came today. Call me crazy, but I call it divine intervention.  You have to know what I mean!  I see you have a close family and now are forced with the loneliness of your son leaving after his stay with you for 10 days.  That is a blessing in itself.  He used his vacation time to spend with you and your wife.

      Well, as I hate to leave, The Voice is on and it always brings a smile or two while watching. smile seeya tomorrow!

      Frustrated

      w

    • georgeGG
      georgeGG frustrated61

      Posted

      Dear frustrated,

      The joy of the new born is powerful medicine. He heals the labours of the mother in an instant, brings the light of wonder to his siblings, swells the chest of the father and takes years off the grandparents. And in all of us fills our hearts with song.

      And if you are crazy to see the new born as a gift, a loving intervention, by the Almighty, then I am crazy++. Is not each little one a miracle of stupendous proportions? I am so glad for you, you and all your family.

    • georgeGG
      georgeGG frustrated61

      Posted

      Thanks frustrated. 😛 Crazies give the best hugs. 😜😄😄😄

      And here is a big hug for kkylie 😄😃😀😃😄😃😀

    • frustrated61
      frustrated61 georgeGG

      Posted

      Doc, I wrote the initial "crazie" thing and it didn't show up when I pressed "reply" so I wrote it again.  You must think I have the "dribble" factor!

      Hugs all around!

    • frustrated61
      frustrated61 georgeGG

      Posted

      I cannot make those emotiocons.  The only ones I have are in the  upper right corner and it isn't much.  But know, I'll make one as a symbol of a hug and it isneutral;-) yep what an awesome way to express a hug!  lol
    • georgeGG
      georgeGG frustrated61

      Posted

      That is sweet, but you were going to beddy-byes. Sleep tight, sweet dreams and a lovely hug-in tomorrow.😄
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