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Addison's Disease Message Board


Addison's Disease Board Index


Can anyone help me?? I have just ben diagnosed with addisons this week and was told i have complete adreanal failure, My doctor tells me, he thinks i have more going on than just addisons disease aswell..but my endrocologist cant see me for at least another 8 weeks as he is to busy. I have been told they want me in hospital asap, but due to the lack of beds and staff, this is not possible at the moment and i will have to wait till 28th of august before anyone can see me.

Has anyone had to wait this long,before they saw there endro consultant?? As i have been sent home from hospital with just my medication and no information about the disease at all. My GP tells me he does'nt know a thing about addisons and he also said he does'nt even know when he should send me into hospital. My life is in his hands, and he gives me no confidence in the way he is treating me, so i am very scared... Has anyone else had these sort of problems too????
I am in the process of tring to find a new GP...

I have sevear tremors and shakes in both my arms, hands and legs, I have constant lower back, neck, leg, shoulder pain and i am finding it hard to walk unadided at the moment, i am also extremly tierd all the time and pass out and collapse every day,my BP when i was in hospital last week was ranging between 80/24 and 90/50 i am so scared, as no one is telling me anythink apart from i must stay on the steroid medication or it can kill me.(And i hate this medication, all i seem to do is cry all day, i must admitt this is getting better each day tho) i have also been told i have a small ovarian cyst about 3cm but an elevated ca125 level which could indicate a tumer, I am now awaiting another scan for this In the last 6 months i have had pheumonia in the left lung an infection in the right lung and i also had a P.E bloodclot in the lung,endriometriosis and IBS. The doctors have told me i have not got any nurological problems but they cant explaine why i am having troulble walking and why i have extremely bad tremors and shakes all over, but mainly in my legs, and arms, i also have have numb hands, they shake too , but some days are better than others, I don't no why...
Also i have been suffering with indigestion, nausia, ice cream headaches just in my forehead, feeling lightheaded,confused most of the day and my memory is awfull.
The doctorsand consultants just tell me i will get better in time, and that i need to see an endriocologist, as they dont know what is wrong with me and that the addisons disease is completely over there heads ...my medication for addisons is 20mg of hydrocortisone and 100 microgrames of fludoritisone a day.
PLEASE CAN ANYONE HELP, as i am so scared and feel so alone . I am a 38 year old lady tring to bring up to young boys on my own.and i am finding each day so hard..I hope someone can help as i feel so alone. the hardest thing for me was every one was saying it was all in my head and i needed to see a shrink. but now i have been diagnosed they tell me i dont need to see one anyone.
At least now i know i am not going mad :)

THIS IS A NEW THREAD:
The doctors have just told me that they believe i may be suffering with lymes disease aswell, this makes so much sense as i have had the bulls eye rash in october, my condition has got so much worse since they put me on the steriods.
Does anyone know if it is true that steriods, can make the lymes disease twice as bad? this scares the hell out of me as i cannot come of the steroids because of the addisons disease.
does anyone know how hard it is to get rid of the lymes disease once it has started to hit the nervouse system?? is it curable?? how long will it take to get better or will i get better completly, seeing how i am in tyhe later stages of the disease??

I also just done the canadian lymes test, and was so shocked as i scored:
53 out of the 76 symptoms, now i am worried.
PLEASE HELP ................................................................
[QUOTE=ozzyie135;4028761]Can anyone help me?? I have just ben diagnosed with addisons this week and was told i have complete adreanal failure, My doctor tells me, he thinks i have more going on than just addisons disease aswell..but my endrocologist cant see me for at least another 8 weeks as he is to busy. I have been told they want me in hospital asap, but due to the lack of beds and staff, this is not possible at the moment and i will have to wait till 28th of august before anyone can see me.

Has anyone had to wait this long,before they saw there endro consultant?? As i have been sent home from hospital with just my medication and no information about the disease at all. My GP tells me he does'nt know a thing about addisons and he also said he does'nt even know when he should send me into hospital. My life is in his hands, and he gives me no confidence in the way he is treating me, so i am very scared... Has anyone else had these sort of problems too????
I am in the process of tring to find a new GP...

I have sevear tremors and shakes in both my arms, hands and legs, I have constant lower back, neck, leg, shoulder pain and i am finding it hard to walk unadided at the moment, i am also extremly tierd all the time and pass out and collapse every day,my BP when i was in hospital last week was ranging between 80/24 and 90/50 i am so scared, as no one is telling me anythink apart from i must stay on the steroid medication or it can kill me.(And i hate this medication, all i seem to do is cry all day, i must admitt this is getting better each day tho) i have also been told i have a small ovarian cyst about 3cm but an elevated ca125 level which could indicate a tumer, I am now awaiting another scan for this In the last 6 months i have had pheumonia in the left lung an infection in the right lung and i also had a P.E bloodclot in the lung,endriometriosis and IBS. The doctors have told me i have not got any nurological problems but they cant explaine why i am having troulble walking and why i have extremely bad tremors and shakes all over, but mainly in my legs, and arms, i also have have numb hands, they shake too , but some days are better than others, I don't no why...
Also i have been suffering with indigestion, nausia, ice cream headaches just in my forehead, feeling lightheaded,confused most of the day and my memory is awfull.
The doctorsand consultants just tell me i will get better in time, and that i need to see an endriocologist, as they dont know what is wrong with me and that the addisons disease is completely over there heads ...my medication for addisons is 20mg of hydrocortisone and 100 microgrames of fludoritisone a day.
PLEASE CAN ANYONE HELP, as i am so scared and feel so alone . I am a 38 year old lady tring to bring up to young boys on my own.and i am finding each day so hard..I hope someone can help as i feel so alone. the hardest thing for me was every one was saying it was all in my head and i needed to see a shrink. but now i have been diagnosed they tell me i dont need to see one anyone.
At least now i know i am not going mad :)[/QUOTE]
[QUOTE=estria;4031126]Hello Ozzyie,

I am so sorry to hear that you are going through this. I cannot really address the Addison's issue but I would suggest that you take charge of your own health and get a copy of the test results for yourself. The adrenal glands produce a variety of hormones including testosterone, aldosterone and cortisol. All of these steroids control many things in your body including your blood pressure, how you handle stress and your gynecological functions such as ovulation, menstruation etc.. There is a large variety of problems that can occur with adrenal glands and sometimes the adrenals simply have a problem converting the precursor of these hormones into the hormones themselves. You may therefore be experiencing an imbalance of these hormones and this would be causing your problems. The steroids are the treatment of choice at the moment and your doctors are correct in saying that you need to stick to your medication. However, the medication may need to be adjusted or perhaps another type of steroid tried in order to fit your specific situation. All will depend on what your endocrinologist has to say.

In addition to getting a copy of your results and doing some of your own research, I would also try to find an endocrinologist a little sooner. Ask some of your friends or family if they happen to know anyone or call the association of endocrinologists in your country or area and see if they can suggest something. Another option is to find another G.P. as you are doing and to see if perhaps this person is affiliated with another endo who can see you sooner (usually doctors do referrals amongst themselves so a specific doctor will get referrals only from certain G.P.'s etc..). You may want to try going to a larger centre like a university centre as this will have a larger percentage of specialists and residents available. I am also sure that you can find web-sites of Addison support groups which can provide you with both information and emotional support.

As to your ovarian cyst, again I would get a copy of the ultrasound report and have a look for yourself. If the cyst is a 3 cm simple cyst (filled only with fluid) then it is highly unlikely to be cancerous. If it is a complex cyst or a solid tumour then it will probably need to come out so that you can be sure that there is nothing going on. The report will give you the radiologist's impressions of what was seen on the ultrasound. Keep in mind that the CA-125 can be unreliable in premenopausal women and endometriosis (which you mentioned that you have) can result in a false positively high reading of CA-125. Just to let you know, a score of 35 or lower is considered normal for this test.

Try to find someone to talk to, a relative, a friend, a parent .. anyone. Don't feel like a burden. We all need the kindness of others from time to time and you need support during this time. If you can find help with your caretaking duties this would also take a load off your shoulders.

I wish you the best and hope that you can get in to see a specialist soon so that your situation can get under control asap. Sorry I could not be of more assistance.

Estria[/QUOTE]

thankyou so kindly for youur reply, i will definataly get my medical records to see what tests they have done and the proper readings, since i last posted this note on here, things have changed slightely, a complication has arisen and they now believe i may have lymes disease. This would explaine alot but this has now made me very frightened indeed, as i have learned tby looking on the net that taking steriods can make the lymes disease really bad this scares the hell out of me.
i rag the hospital today to explaine this to them, they said my consultant would ring me back and i would have to go into hospital, but alas i waited allday for there phone call but i assume there are no beds as i hav'nt heard back from them yet.
asfor my my family, they are brilliant my mum has lived with me for the past 6 months, i dont know what i would have done without them to be honest. thankyou again for replying:angel:
[QUOTE=soscared20;4032751]I am so sorry you are going through all of this i have many of the same issues you just described and it is so scary. The cyst is probably endometriosis I ahve this severely and have had two cysts in past two years. All your symptoms sound like addisons but you have to get put on correct dose of med. I wish I could help you more I can hardly walk and have so much pain and all i do is cry also. I have young son I worship and can barely care for him right now. You are going to be ok but you have got to see endocrrinologist sooner. Do you have family that can help you fight because with addisons you are so tired and sad and in pain hard to fight for self. Stay in touch if you need to vent i will listen because I am scared to I am only 35 and going through same thing. I cannot even find good endocrinologist to help me with dosing. This disease is rare and alot actually most drs. know nothing about. [COLOR="Blue"]* link to commercial website and related info removed by hb-mod, moderator * [/COLOR]
Let me know how you are doing. i wish I could be more help. You do not have cancer a simple cyst on ovary is probaly endometriosis or polycystic ovarian disease, none of those are life threatening.stay in touch. Angie maybe we can help eachother.[/QUOTE]

hi Angie, thankyou for sending me your kind message, it's nice to be able to talk to someone that understands, how each day is such a struggle, just getting out of bed is so hard, i am dreading the school holidays, as i wont be able to get my afternoon nap, Don't know how i am going to cope with this, How do you manage? Do youhave lots of help from family?
My mum and dad help out the best they can but there not well themselves,and theres no one else i can ask, i must say my parents have been brilliant thou....
I am sure you are right about my endometriosis, that it is causing the problems with the cysts, To be honest, i hav'nt got enuf energy to worry about it being anything sinister, feel to poorly for that.

The doctors are thinking that i may be suffering with Lymes disease aswell, and this scares the hell out of me, i really have enough going on with out this aswell, i am awaiting to here from the hospital for the tests to be done soon.They were supposed to ring me back today, but alas and not a surprise when they did'nt ring back,I will be on the phone first thing in the morning. Do you know what is the right medication for addisons, as i have told my endro that i am not on a high enough dosage of medication but he tells me, that i am, and he wont increase it.
I would like to say a big thankyou for sending me your message, you have helped me so much, just knowing i am not going mad feels so good, and that there is someone to talk to, really dose help so much.

what is it with endrocologist? i really do think they don't know what they are doing or even know how to deal with this disease... and all we are , are just guinney-pigs to them i think.

i would love to stay intouch,and it would be so good if we could help each other through this horrible condition:angel: cheryl
[QUOTE=ozzyie135;4779033]i am aware of the PALS in the hospital but im feeling to ill to even put up a fight right now, but i will try not that it will do any good.

All i want to do is give up now, dont think i can go on like this much longer or how much more my body can take..

All i pray for is 1 good day where i can be normal, Thats if i know what normal is anymore my body feels like its had all it can take .[/QUOTE]

Wow this sounds like it came from my life... I am so sorry you are also going thou all this... I live in Denmark and things are different here, I do not know some of the words (medical terms) as you guys use, so I do not understand some of it, but what I gain from [I]this[/I] post is.....
What you need to do [B]right now [/B]is to find a family member or a close friend to help you fight, someone you trust... Had I not had my husband when I got addison, I would not been here anymore, because I gave up, I just didnt have the strength to keep fighting the desease AND the system aswell.. It sure takes a good health to be sick... :( so I know what you are going thou, because I have been there and still am.
You need someone to fight the battles with system, doctors and hospitals, as long as you are not well enough to do it yourself.. And you need it [I]right now[/I]...
The one thing that keeps me going is, I need to make sure my son keep his mother cause I owe that to him, he only has one mother, He is here because I choosed that 12 years ago, and I am staying here as long as possible because of him. so keep telling you that when you feel lowest, see yourself as mother and not as yourself.. that is what helps me. I do it for him, and it gives me much more strenght that way. For me it is easier to fight for his Mother than [I]just[/I] me...
Now each time I go to see a doctor, I do not go alone. first of all because I never remember half of what is said and agreed as I get a lot of painmedicin aswell for something else, but mostly because I need someone who is strong enough to ask the questions I do not ask, and to fight the battles that I can not...
I have also written a statement that says my husbands words will overrule mine if he says I should be put in hospital and I say no.. cause I nearly lost the battle one time where I said no, as i did not feel I had to go (I did not want to ruin my sons christmas by mom being in hospital, and i nearly ruined his life taking his mom away for good insted). So when I am at my lowest, he takes over.

Dont give up my friend, if you need more peptalk then I am only a msg away.
[B]You are not alone.[/B]
I trust in life do not hand us more than we can take, but life must really have more faith in us than we do ourself, cause we sure get enough on our plate.
Thinking of you:wave:
Lis





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