Doctor Update

[looking4answers]

At the doctors now. Blood pressure controlled at the moment. 120/73 but 24 hour urine test results levels all over the place. Doc says appointment with urologist and endocrologist. Say he cant say it will turn out bad or good. He kept all meds the same. Im worried , Death is imminent... He had that death bed manner about him. Wharever he was seeing on the report showed in his face. He told me he is going to let the specialist handle everything else and good luck.... so guess that is that.... no hope for the wicked.. at the moment planning things for my end of days to get things in order. My hope is very low and ive stopped planning my tomorrows

[nomorepanic]

Michael - don't write your own death sentence yet - nothing is set in stone like that.

[Anxious_gal]

Glad your blood pressures ok.
It's good they are keeping an eye on you and doing mote tests .
When will you be seeing the specialist?
If it was anything that bad they would have sent you to the hospital .
I'm sorry you are feeling scared again :(

[selphie]

what u just posted is quiet unnerving for me why do u feel like your going to just give up?:shrug:

[jessicalittler79]

what ar u being tested for i must have miss that ??good luck hun

[looking4answers]

Sorry if I unnerved anyone. Its just that I have had a bad feeling about this since the first day. My wife got angry with me last night and told me that it would be great news today that all my levels would be perfect and that my doctor would say no big deal but I knew the news wouldnt be like that. It was as expected for me though exactly as thought and the fact he signed off on me I expected to. I was somewhat prepared. I have to agree with Nic though because 16 years ago they sent my wife homecwith two months to live, she is still here after 16 years also they gave my 15 year old a year to live 13 years ago and she is still here and look at Stephen Hawkins they have been telling him he was going to die for over 40 years everyday. He is pushing 70 so there is always hope. But im a realist so I prepare what I can.

[looking4answers]

Very tired today. I was exhausted with going to doctors yesterday and wife had to also have a physical blood and urine due to insurance. Woke this morning like most mornings ,hands numb and something inside making me feekpl very nervous. No wonder I read about adrenal cancer and kidney cyst all last night. What I have or could have is so rare ,only one person in a million gets it. Anyway I woke early and couldnt sleep. We got up and ran a few errands and just came home. Im trying to stay busy so I wont be worried

[ElizabethJane]

Sorry if I unnerved anyone. Its just that I have had a bad feeling about this since the first day. My wife got angry with me last night and told me that it would be great news today that all my levels would be perfect and that my doctor would say no big deal but I knew the news wouldnt be like that. It was as expected for me though exactly as thought and the fact he signed off on me I expected to. I was somewhat prepared. I have to agree with Nic though because 16 years ago they sent my wife homecwith two months to live, she is still here after 16 years also they gave my 15 year old a year to live 13 years ago and she is still here and look at Stephen Hawkins they have been telling him he was going to die for over 40 years everyday. He is pushing 70 so there is always hope. But im a realist so I prepare what I can.

Dear Michael I glad that you are finding some hope in your situation. Most patients with MND die within two years of diagnosis. Professor Hawking is the exception rather than the rule. His progression through MND is unique. Most patients do not live that long. EJ

[looking4answers]

Yes I wasnt comparing myself to having mnd but if you want to read something to me that is just as scarry read about adrenal cancer , its a big possible for me at the present and I had no idael the adrenal glands control so many things but yes there is hope for every situtation and its easy to loose site of that fact but its easier to gain perspective to mortality(mine) when you realise the prospect of what can happen. It helps preparing for such things easier knowing that the next moment you can only be a vague memory. On a happier note I did my full half mile today and rode my bike which i havent done since last year and spent most of the day outside which is unusual for me . So things feel somewhat better in someways.

[Anxious_gal]

glad you got out and enjoyed your self :hugs:

[looking4answers]

Thanks Mishel... I figure whats the worse that could happen .... I could die ? Then might as well be enjoying myself ... right? You have always been such a joy to me for your supportive comments . I want you to know you are a precious soul that I hope God blesses in a wonderful way for being so kind! I pray for you everynight that your life be better for your acts of compassion even when you are suffering. Thank you for being you!

[looking4answers]

Since nobody has asked. They say when you. are really ill ,your friends disappear and dont know what to say. I suppose that is what has happened here. I have been very very weak the last two days like alk I can do is sleep,no matter how hard I try. Im worryied about things that are coming up and a little sad. I have been on this site for al most six years so I felt I wanted to post an update.I feel im slipping away although the doctors would never say that ,its funny they dont know are they arent telling. My body is telling me something and its hard to ignore. Im sorry if you think that im full of drama but how would you feel in a bad unknown situtation? Happy and bright cheerfull? Sorry im such a downer but I feel very alone especially now

[paula lynne]

Hi Michael, Ive just seen this as I dont come here often these days.
I notice that this time of year, people seem very pre=occupied with their existing/imagined illnesses, Im sure its nothing to do with you, please dont think that.

Your friends here havent deserted you, they just dont happen to be logged on right now for whatever reason.

Youve every right to be on a downer. Youve been through a very traumatic time. You still await conclusive results of certain tests, its little wonder you feel like a ship bobbing around on a huge ocean right now. Uncertainty is difficult at the best of times, and especially when it concerns our heath.

What I ask you to do today is imagine...the best, not the worst outcome. Positive thinking plays a huge part in health, physical and mental.

Never give up hope. You arent alone. Your friends here are with you in spirit. I know a lot of people care about you.
You need to gather your reserves and ask the doctors OUTRIGHT and DIRECTLY what is going on with you. THEN, and only then, will you be able to deal with what they present you. Dont give up on yourself Micheal. We havent.

Much love, hugs across the big pond.......:hugs:
Paula x

[looking4answers]

Thanks Paula, M not suppose to see the. specialist till thursday. Im starting to put two and two together reading other folks experiences with the samethings and im starting to get scared. The dr im going to this week is one I only saw briefly in the hospital and never been to his office. But he is a boldt person that blurts out the worse case scenarios from the gut. My other dr had the dire bedside manner but im very frieghtened of what this one will tell me. Ill try to be positive but I know I better take an extra vakium that day. Thank you for your kind words and frienship. It means alot to me.

[Anxious_gal]

I only noticed your reply from 2 days ago :(
Aw you're very sweet :hugs: In fairness I have been worried about you, it's not often that happens to me, to think about how someone I know through the internet is doing.

I know myself that I can only post so much before people stop repling :( Maybe they just don't know what to say, I guess.

Sorry you are feeling weak :( I do understand the silent suffering, I have been in constant pain despite pain meds due to my wisdom teeth for months. It's frustrating that people keep forgetting I am in pain, little things like asking how I am, I just reply with still in pain :(
When you are suffering you do need extra compassion but it seems people only have a limited supply of that. People are only human so don't take it too personally :hugs:

Sorry you feel as if the doctors don't care and they aren't taking you seriously.
It sucks to be stuck in Limbo waiting for the proper diagnoses.

Hopefully you will find out what is happening on Thursday, I hope it's good news :hugs:

[SDP]

Very tired today. I was exhausted with going to doctors yesterday and wife had to also have a physical blood and urine due to insurance. Woke this morning like most mornings ,hands numb and something inside making me feekpl very nervous. No wonder I read about adrenal cancer and kidney cyst all last night. What I have or could have is so rare ,only one person in a million gets it. Anyway I woke early and couldnt sleep. We got up and ran a few errands and just came home. Im trying to stay busy so I wont be worried

Hey sorry to hear your feeling unwell I went through pretty much the same thing a few years ago. I was obsessed that I had mnd or some sort of cancer. But you need to somehow think about things rationally, you pretty much answered your own fear about adrenal cancer (whatever the hell that is) it's extremely rare. And with regards to mnd, pain & tingling are not a sign of Mnd.(Mnd doesn't affect sensation) have you ever had blood work done? That would settle your feelings with regards to cancer. So I hope you manage to put this behind you, start concentrating the real issue 'anxiety'

[ElizabethJane]

Dear Michael I'm sorry that you are unwell. My Mother died of MND and I lost my Father to renal cancer in April. My colleague at work his wife has died recently of pancreatic cancer My Dad did not know the full extent of his illness and my colleague did not know the extent of the cancer until she had two weeks to live. All I'm trying to say is to try to appreciate the life that we are given. None of us knows what is around the corner. Your faith in human nature has been proven with your wife and sons illnesses. They have proved that the medical profession can be wrong. EJ.

[looking4answers]

They did blood work everyday for five days twice a day,looking,looking,looking for what they never said. The last day theytook 8 viles of blood from me and took 24 hour urine. My doctor said he doesnt know what the levels mean,some are good others are qustionable. Im sute he is waiting for the specialist to feel in the details. Ill have to take a couple of valims that day just to go. I dont know this doctor. I met him for 30 secs in the hospital and he was spewing out all kinds of worse case scenarios. Im not sure what the heck I have,cancer,cyst,stones, whatever but the reading I have done points to themknowing exactly what I have . I read how they proceed from thing tothing when they know without a doubt what they are dealing with. I dont want cancer or any of those other diseases and if there is a disease you can find in the blood surely they know about it. They took blood from veins I didnt even know I had. I had bruises all over my hands ,arms and everywhere in between. It was sad looking. If its cancer its par fot the course I have seen several family members waste away up close and personal withit and why am I better than they. Im doing alot of praying but im getting a t of things in order and making my wishes known to people that matter. Funny thing is when something comes up like this you loose any or most thoughts of what to do in the end or what tp say or what your life truly amounted to. I of course will always have hope that things are not the way I suspect but my mother always taught me to hope for the best and prepare for the worst. I thank you all for your encoragement and support and kindness. God Bless you all..

[looking4answers]

The last thing said out of my doctors mouth was " it can turn out very very bad but thenit could possibly turn out good. I had not ask him anything. It was just the last thing he left me with,but why?

[Anxious_gal]

When my mum was in hospital she had blood taken a few times a day and her arms were covered in bruises too.
It seems like the doctors do not have a diagnoses yet, I'm surprised they haven't done a biopsy of the lump yet, surely if they thought is was cancer a biopsy would be ordered right away as that would be the usual thing that is done.

Again not knowing what is going on IS pure torture, I can understand how it's hard to enjoy life when you don't know if you are ill or not.

[looking4answers]

I just wonder if the reason they havent gotme to run to have a biosy is they know exactly what it is and where its gone. Mishel they did five ct scans of my body three of which was lower adomen and kidneys and two ultra sounds in the same areas.... Sounds like something specific but then I could be wrong

[paula lynne]

I agree with your mother when she used to say "Prepare for the worst", but I would also add something my mother used to say ....."Expect the best"

There could be several reasons they are unable to do a biopsy at the present time. Please dont automatically assume the worse, even though I know this is hard. Hang in there, what for a definative diagnosis THEN deal with what ever it is. My thoughts and prayers are with you M.
:hugs:
Paula x

[ronski]

Your story particularly with the blood pressure problems are very much how I have been the last four years. I was admitted to hospital with a provisional diagnosis of adrenal tumour ( phaeochromacytoma) but after extensive tests including multiple scans, blood tests, 24 HR urine tests which showed adrenaline in my urine I was given the all clear tumour wise but discharged with no diagnosis other than it's anxiety and depression.
I said to them if you feel as Ill as I do you would be anxious and depressed.
Anyway to cut a long story short I was eventually diagnosed with ME/CFS which is seen to be a central and autonomic nervous system dysfunction. My blood pressure still spikes if stressed to 180/120 but can go down as low as 95/65 hours later.
My family doctor has given me an Omron blood pressure machine for a fortnight so I can send him about 20 to 30 readings to see if I need medicating. He said I don't want to think about it as your blood pressure readings are so unstable at times it is difficult to decide the right course as we don't want to make the orthostatic intolerance worse.
So what I am trying to say is it may be as simple as a nervous system issue which I can assure you is as you say not pleasant but with time may improve. I get periods when I think I am about to die plus major sensations of doom but they always pass. Think positive as that will calm the maybe sensitised nervous system.

[looking4answers]

Frankly what you have been told and you are living with scares the HELL out of me. They should at the very least refer you to an endocrologist to make sure your meds are enough to keep you stable. I am suppose to see a specialist tomorrow because frankly the can see a mass on my adrenal glan and another in my kidney. Now they did a blood work up of 8 viles of blood and told me everything looked pretty good on blood but the doctor told me the other day thst most levels on the 24 hour urine looked ok, but others were well rather out of balance for whatever that means. I have a terrible feeling they have a 99 percent chance of knowing what im dealing with and will tell me tomorrow . I read all the things that they do besides biopsies to know with ajlmost 100 percent positive ID what something is before they do a biopsy. My masses are one cm each,one on the asrenal and one in the kidney. The day they did the ultrasound they had two doctors run in and talk about what they saw like I wasnt even there. One said to the other,do you see the feathering? and the other said oh yead and then he said do you see that up there and the other said oh yes. They both looked and scanned for over 45 minutes but told me nothing. I am so scared right now im sure my bp is spiking but when I was at the drs the other day I was sure it was too butit was 120/73. Not sure how that is possible but it was. The nurse said my pulse was 108 but the dr came in later felt both wrist and said....I dont believe its 108.....so I have no idea what will be told to me tomorrow but im scared. I think everyone that has had panic and anxiety for years should look up adrenal cyst or adrenal problems. I cannot tell you how many accounts of people that were blown off told theyhad anxiety and panic attacks and found out later they had this life threatening problem. I am so worried for others here that may have the very samething. If I were you I would finfd better drs to help. They say they finf 50 percent of adrenal tumors on autopsies of people that died from them and didnt even know they were really sick.

[ronski]

Yes if I am honest, I do get a scared at times because I can feel the adrenaline surge and the blood pressure spike, it feels like my chest goes weak. But in the NHS in jolly old England you cannot see any specialist without the permission of your General Practitioner as you always need a referral letter. You cannot see them privately either without that darned referral. I feel that we have a very dated system where the GP who is not an expert on most specialities actually decides what is best for you, it's like the tail wagging the dog. I did see an endocrinologist 3 years ago and he was one of the rudest doctors I have ever met. His registrar saw me first and we discussed various options and basically what was explained was gobsmaking. He said that in cases that are unclear they give a wastebasket diagnosis such as Chronic Hyperventilation Syndrome and offer simplistic breathing exercises. If it gets better great no money wasted as such, if it dosent think of something else and work through that diagnosis.
Well nothing worked so the Consultant came to see me, two minutes later a diagnosis of anxiety and depression and kicked out of hospital with no advice. A few weeks later a Cardiologist read my notes, examined me and put me on a tilt table. He said that I had ME/CFS with vasovagal syncope and that I had a type of Dysautomonia which means that your body does not regulate itself properly so my unstable blood pressure. So the endocrinologist was wrong but he had me tagged as anxious before he saw me.When I read your history it seems as though your doctors really did well and took you seriously. I hope tomorrow goes well for you and that you get some good news that you can focus on.

[looking4answers]

My update is in a new post if anyone is interested....