Posted , 5 users are following.

Its me again, I have no one really to rant to this about other than you helpful bunch on here. My family, partner and friends understand to some degree but of course I don't think anyone can truly understand until they go through what we all have and still are... 

The last post was that I was due to have CRH test which I did have done (boring) and was due to have the dreaded IPSS test which I tried to avoid having. After having my last appointment with my endo turns out I can't avoid having the IPSS test, I have it on the 13th! 

On my last app (29th) I thought I was going to go in have the result from the CRH test and get a appointment for my surgery to have the tumour in my pitutaty gland removed, however turns out the CRH test wasn't fully conclusive and that something had popped up which required further investigation, hence the IPSS test. They explained that they wasn't sure if I potentially had a tumour on my adrenal glands now too! sad I don't know how much more of this I can take! its affecting me as a person and now my career as I am struggling to get to work I am in training for the police and its stopping me in my tracks!

I have a heart scan on Friday too I'm not quite sure why I have that either but I do, he did explain the IPSS test will be the worst test I will have now, and that any further tests will be in the form of a MRI or CT scan! I just want it all to be over and done with, I am feeling more and more frail as the days go on, they also said that the tumour in my head is surprising against the optic stalk nerve which is affecting my vision and giving me terrible headaches and vertigo ! 

When does it end? I thought the end of the tunnel was going to be Christmas but turns out more tests and it will be the new year before I get any form of answers!  

0 likes, 6 replies

6 Replies

  • Posted

    Dear Ace

    I know your frustration. I do not know how long it's been since you started going to drs to get a diagnosis. It took them 9 years to diagnose me for the "cyclic" Cushings ....1980 to 1989. I've been dealing with Cushings disease for 37 years. I've had the pituitary surgery twice, 1989 and 2016. Now, I have residual tumor growing in pituitary area. I also had a Cat scan with dye last week and have something on my kidney. My new endo is doing a lot of tests, as i have high ACTH hormone, and my hormones are all out of balance, I too could have a tumor on my adrenals and a ectopic tumor on my kidney and I only have one kidney, plus the tumor growing again in the pituitary area.

    I was 29 when this all began

    I ended up unable to work at age 38. I'm now 66. Please understand that it is necessary to do all the tests as the drs need to pinpoint the exact area for surgery as they need to know where to operate. You may need to reevaluate your own expectations of your ability to keep working. I would talk candidly with your drs on your struggle to work and if they can give you any insight on your prognosis and recovery time. I know it's very hard to accept that this illness is debilitating. I'm praying that things turn around for you, that you can get exact diagnosis and plan what you need to do accordingly with that answer.

    • Posted

      Were you able to receive social security disability due to the fact that you were not able to work?  
    • Posted

      Thank you for your reply, I have been quite fortunate in terms of how long it has taken to be diagnosed it has only been over the past year. I started to develop my first symptom in August last year when my periods completely stopped, they originally thought I had something called prolcatoma. So I shouldn't really complain as after reading most of these posts like yourself a lot of people have been having to wait a very long time. 

      I guess I am just starting to struggle even more as the days go by, my moods are massively affected and I can feel myself changing as a person not just in appearance but I am a mere shall of myself in comparison to who I once was. I will discuss with my endo on my next appointment in terms of work, I am unable to move onto the next phase in my career due to the illness as I am sure you can imagine I will not be good officer working on response 999 calls in my current situation so it is affecting my work balance as well as social as I am an avid gym goer unable to do the mere min at a push now! 

      I am not looking forward to the IPSS test next week the idea of tubes in my veins and head is a bit discomforting, I am 25 years of age so I feel I am to young for all of this. I had a tumour on my appendix which they removed, one in my head and now a potential one in my gland. Its all bit to much for me to cope with especially with the weight gain and vision loss. I have also been referred to a genetic department to see why I am getting this. 

    • Posted

      Dee..yes I've been on ss disability since 1989, although they denied me the first time around, and it was late 1990 when I was approved. The ss had to pay me retroactive to the first date i filed the claim.

      Now I'm 66 the ss disability revolved into just ss but nothing has changed. My medical, hospital and my prescriptions are all pd for.

      If you are going to file for ss make sure you have all your drs letter stating you are PERMANENTLY disabled...a list of all your drs visits and tests etc..and make sure you have copies of every thing you supply to SS,don't get discouraged if they deny you the first time..appeal..I had 23 drs and they denied me. If you have children under age you will receive SS for them also. If you have any questions, please ask ill try to answer them.

  • Posted

    You are scared and this is normal. Sounds like you have a good team looking after you. Dont worry about the IPSS test too much. They will make you comfortable. Ask your doctor if they will prescribe something to relax you before test. You will be ok Ace. I had the heart test too before my surgery. Standard for any big surgery. Im only 5 months post op and can feel your emotions right now. Hang in there, slow down and concentrate on how well you will feel. There is no quick solution to this process you are about to embark on. I am learning patienance is the key.
  • Posted

    I am so sorry that you are having such a rough time.  We did try to tell you that the IPPS test would be vital for a firm diagnosis.  I promise you that it is the worst test but it will soon be over.  It is more uncomfortable than painful but it is absolutely necessary.  When I was being tested for Cushings I had to have a heart scan too.  It turns out I have an insignificant heart murmur, which is quite common so don't panic.  I imagine it must be so hard for you to train as a Police Officer while all this is going on, but it is a goal worth fighting for.  Please do not be scared about the IPPS test.  Once it is done you will be on your way.  Let us know how you get on and I will be thinking of you.

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