im done......im finished....

[testdeprived]

**** doctors i give up. 2 years ive been fighting for a diagnosis. i diagnosed myself 2 years ago with a brain  tumor, then my mri said i had a 2mm one. then i go and get another mri 1.5 years later and they say its not there...so i bring the films to the neuro endo and the neuro endo says it is there. soo i contact the facilty that says its not there, and they call me and trll me that the neuro endo agrees with them.

meanwhile i have symptoms everyday and feel like ****.

every symptom under the sun.

im 21 and feel like im 90.

my primary caare is the only doctor who truly believes in me, she wants me to go to  research clinic like nih, but how can they accept me with this new mri that isnt showing my tumor that i know is there.

also how can the ffreaking neuro endo call herself an expert and send me away with a cortisol an cretinine out of the normal range. cortisol and may be a symptom of voetraining but they are also a symptom of cushings

im gonna have to accept that ill have to be like this for life. everyday my vision gets more blurry, my jaw hurts more, my joints hurt more, my headaches and appettie get worse, my fingers and toes hurt more, my thinking and motor skills deteriorate more,my insides stab more, and there' nothing my primary can do shes just one person.

[SarahL2491]

Cushings can be gotten by slim people; anyone on steroids puts on weight......its the nature of the beast.  Let's offer support to each other, not pick messages apart

[SLadylani]

Wow testdeprived. Your story. What you said is how I feel summed up. I'm 23 y/o but feel like I'm 80. I feel like the doctors are telling me, and I feel like I need to, accept that this is going to be the way I feel for the rest of my life. My symtoms too are getting worse and I fear that before I get a daignosis they'll get so bad that they're non-reversible.

But what I do see is persistance in you for such a young age. We won't give up or let the --- doctors take advantage of us or treat us like another number. And I have to say that in the 2 years of age I have on you, I can offer this. In all the horrendous life experiences I've been tghrough, including abuse, trauma, and rapes, some good has always come of it and that is usually to help anothet, or many others by sharing my experience of strength and hope.

It's hard while I'm in the battle to remember that or not become resentful for why I was chosen to go through this to one day help others. I guess I need to remember that fightin g why I am battling this will only make things worse and that perhaps accepting my symtoms in this moments is perhaps what I need to do as oppsoewd to acceptinmg I feel this way for life.

Feel free to message me any time, I guess we vhave a lot in common :)

Sara

[testdeprived]

nyu said they werent doing studies of adenomas on the 7t...they are just using the 7t for MS research. They thought i was interested in the study for the 50 dollar payment they give lol. They wanted all healthy individuals...which obviously excludes me lol...and they said that the 7t isnt as good as the 3t for tumors..which idk if i believe.

h e then tried to persuade me to get my next mri at nyu

[meeshelle01]

Hi...I too have felt very helpless over the past 3 years.  I was sent for an MRI and told I have pituitary micro adenoma.  I went to Johns Hopkins in Baltimore, MD, thinking "they're world renowned, they'll take care of me and figure this out".  Then they told me I might have auto immune hypophysitis and then after two yrs, a year of steriods which did nothing to shrink the thing (but did make me VERY rageful and cost me $500 for cussing out 2 state troopers) Now they tell me the steroids messed up my adrenal glands and I may have to take them for life, but they still aren't sure if I have a tumor, it could be a tumor, or just hypophysitis, or both...So I went somewhere else, now this Doc isn't sure either!!!!!! I'm with you, **** doctors, I guess that's why we're here.  I'm doing my own research, I'll switch docs as much as I need to.  I figure the more theories the closer I'll get?
I feel for ya, I understand.  

[testdeprived]

yeah, if theyre interested in me, it'll be cool. i only talked to a secretary, and didnt tell them anything about me.

i suppose ive heard that phrase. i suppose it means things have to go bad before they get good?

[faithhopegreatestlove]

Wow! Ever heard the phrase, "Always darkest before the dawn"? That's terrific.
--faithHGL

[testdeprived]

only positive thing i can say so far, is icalled NYU and asked them if they were looking for any more guinea pigs for their 7t mri research, and they seemed interested....so ill be getting a call from them.

id love an mri on a 7t...although they cant say for sure that strong of a magnet is safe for me

[MrsAristotle]

Ok I only mentioned over training syndrome because some of your symptoms screamed that but you obviously are more happy to have this dismissed thats fine it was only a suggestion I was merely asking you to look outside the box because sometimes too many symptoms can scare of the doctors, thats it really, I was merely trying to be helpful, whether or not you accept my advice or not is up to you, it is no problem for me if you dont.

Oh so your not going to the xray or whatever now. Gosh I do get confused. You havent said that on the post so just assumed you were.

Anyway as I said good luck on your journey, I really hope you get answers it would be great if one of us on here did, as you know there are 300 of us and we are all undiagnosed and all going through our own hell too. Its hard to share sometimes and I find it quite draining as I am not too good at the moment myself.

Anyway I really hope you find help from someone. xx Mrs A.

[testdeprived]

well i didnt ask for any advice on lifting weights. and im not going to sit in bed all day feeling sick...i get weaker when i dont lift, which means in not overtrained. an overtraiend individual gets strogner wiith time away

overtrained.not overtrained/brain tumor/no brain tumor
none of it matters...no one will find my problems.

i lift 3x per week

idk what xray you are talking about. i a not getting any xrays. if you men mri, im not getting that either. that doc double talked me...told me one thing, and then told these  radiologists she agrees. not worth the possible threat of insurance not covering it...witht he risk of it not showing it.

thinking of trying low dose naltrexone. although i hear nausea and insomnia are side effects.....both of which i have already and want relief from! it says its an ibs medicine so how could it cause

ill never get aanswwers. ill be like that sara woman. posting here at 23.

[MrsAristotle]

Hi in answer to your question.....I simply asked if you were going to up your food intake BEFORE you did your lifting regime. IF you cant eat prior to the lifting schedule then I dont think you should be lifting weights on a low calorie diet...perhaps you are misunderstanding what I have written, sometimes I must say when I am tired in pain I dont always make myself heard.

So what I am saying.....

If you only eat one Stromboli at 5pm I would not expect you to go and lift weights.

You write so much and sometimes the typing is not always seperated by sentences and yes it is easy to miss some of the things you say so I am guilty if I have because when I answer your posts its usually early in the morning in the UK and my vision is blurry and I find it hard to read posts sometimes.

You told me

1.

i could be overtrained from weights...but  ido take rest when i need it...although for how hard  i lift weights...i dont eat close to enough as  i should whch isnt great for a boodybuilder....just hard to eat when u feel like crap all the time...although rionically not so hard to lift.....

also.........

2

workoing out is the only thing that makes me feel like im not dying or wasting away. luckily im still able to go to school as well. although my eye sight is getting worse.

plus lifting is the only thing i truly enjoy anymore...although since my cortisol is elevate3d i havent been making much progress and thats depressing lol


So in answer to your number 1, I merely said in my posts if you dont eat then its wiser not to train that is all......

2. In your post you made it sound as though you are always lifting as its all you have left.

So I apologise if I misread you posts.........

Anyway I hope this new xray will show up that tumour for you. (Which I have never said you dont have by the way).

Good luck. I think I have said all I can really to you and hope you get the answers you seek. Big hugs on your journey hoping you really get some answers this time. x

[testdeprived]

also arstotle i appriciate all your posts, but sometiems  ifeel you dont lsiten fully. you asked me if  iw as going to ''try'' upping my food intake.it makes it seem like you think im purposely not eating. i would love to eat 5000 calories a day for my lifting, i just cant. today  i only ate a stromboli at 5pm barely. then went to sleep at 6pm, and woke up at 9

also i told you  i take weeks off from time to time. also i had a brief period in june when i was eatingf a lot and gaining weight and istill felt like ****

[testdeprived]

nyone try ldn> low dose naltrexone

[MrsAristotle]

Hi Chris and welcome I see you are from Australia. I have my brother living there and we are having an Australian Xmas this year as I will never be able to get there, I have all kinds of stuff and we are having a bar b q yes  even in the UK and I expect the snow lol...

Anyway can I ask did anything happen to you prior to the symptoms starting or did they just turn up? Do you work are you stressed those kind of things because sometimes if you have under lying health issues that you might not even be aware of stress, accidents, studying can bring them on.

TEVA-LORAZEPAM is for anxiety and is not really a sleeping potion.

IF the medication is not helping perhaps you should go back and see your doctor, but do not stop taking the tablets ok.

As I have said to testdeprived having a long list of symptoms to take to the GP is a red flag for anxiety.

I can assure you if I wrote mine down they would be longer than either of yours put together but over the last 4 years I have learnt to trim them down to only the one symptoms that are really bothering me.

For example your headaches would bother me.... fatigue, and nausea......

The rest can be spin offs from the anxiety of you feeling unwell.

I wonder if you have migraines? Have you been checked for them? Migraines can cause havoc to your system.....

There are things that you can get for example by tic bite (Lymes), and some viral illnesses can really poop up your system.

Anyway I am no doctor but would be interested in finding out if anything did happen prior to the symptoms there is usually a clue in that.

Sorry you are unwell at such a young age.

Hugs Mariaxxx

[testdeprived]

same things pretty much lol...also cold intolerance, bone pains, blurry vision

[Chips1989]

Hey sorry to hear about your struggle =(
I hate to be a pest but exactly what symptoms are you feeling or have been feeling?
I have the following and am still looking for a doctor to rule it out.

Body pains
constant headaches
weekeness/tiredness
loss of breath at night
cannot sleep
forget things alot more than usual
hunger feeling but loss of apitite
i feel like vomiting after i drink even a glass of water
tingles in the face and hands occur sometimes
pain the pointer finger on the right hand
Chest and stomach pains
back pains
neck pains. . .just pains :\
im not sure what it could be and the doctors said it was anxiety and gave me pills knows as TEVA-LORAZEPAM 0.5mg. This helped me sleep the first night but now I cannot sleep well at all. Everything used to get worse at night time but now its just more frequent than before.
Id like to hear more of your symptoms that you have or are experiancing please.
and if our pains are to be the same maybe we can help eachother with information.
I too am 21 years old and dont understand what is going on with me at all.
Thank you and I hope you feel/get better !
Chris

[testdeprived]

aristotle im busy now so ill read ur post in more depth late, but  i just wanted to say you could have cushings without the weight gain...rumpled a psoter in the brain tumor section was a case, and knew of others! ill post more later.

[MrsAristotle]

I agree with thyrodian about the MRI and as I have said the MRI results are dependant on who reads them. Radiologists are not gods. My neuro is still convinced on my MRI that there was a really good lesion showing but the radiologist said they thought it was just an ARC on the film, so basically I could have had a diagnosis of MS but the radiologist believes it was a fault on the film NICE ONE HENRY LOL....

Well Cushings humm you said you are slim from what I have read Cushings puts on loads of weight.........

CUSHINGS.

Symptoms include rapid weight gain, particularly of the trunk and face with sparing of the limbs (central obesity). A common sign is the growth of fat pads along the collar bone and on the back of the neck (buffalo hump) and a round face often referred to as a "moon face". Other symptoms include hyperhidrosis (excess sweating), telangiectasia (dilation of capillaries), thinning of the skin (which causes easy bruising and dryness, particularly the hands) and other mucous membranes, purple or red striae (the weight gain in Cushing's syndrome stretches the skin, which is thin and weakened, causing it to hemorrhage) on the trunk, buttocks, arms, legs or breasts, proximal muscle weakness (hips, shoulders), and hirsutism (facial male-pattern hair growth), baldness and/or cause hair to become extremely dry and brittle. In rare cases, Cushing's can cause hypercalcemia, which can lead to skin necrosis. The excess cortisol may also affect other endocrine systems and cause, for example, insomnia, inhibited aromatase, reduced libido, impotence, amenorrhoea/oligomenorrhea and infertility due to elevations in androgens. Patients frequently suffer various psychological disturbances, ranging from euphoria to psychosis. Depression and anxiety are also common.[4]

Addisons a very rare disease.

The symptoms of Addison's disease develop insidiously, and it may take some time to be recognized. The most common symptoms are fatigue, lightheadedness upon standing or while upright, muscle weakness, fever, weight loss, difficulty in standing up, anxiety, nausea, vomiting, diarrhea, headache, sweating, changes in mood and personality, joint and muscle pains. Some have marked cravings for salt or salty foods due to the urinary losses of sodium.[2] Affected individuals may note increased tanning since adrenal insufficiency is manifested in the skin primarily by hyperpigmentation.[5]

I think your primary care doctor is brilliant as I dont think you have somatization disorder either I would think there is a little tumor as first seen, whether it is causing all your symptoms or not is another matter.

Its really hard trying to get a diagnosis I am an expert on that one and I have had positive results, but I have to think to myself well girl you are still here after 4 years so hopefully whatever is wrong isnt terminal for me lol.

Are you going to try and up your food intake and rest on the lifting to see if that helps?

Big hugs Maria

[testdeprived]

thanks thyoidian. its funny the first mri i had was a 1.5 machine, and the second was a 3t. the second mri report says they cant rule out a small micro adenoma, however they dont see the one from the 1.5....what pisses me off is my neuro endo told me that's not true, however when her and the radiologist who did my recent mri spoke the radiologist called meand said she agreed with him ><

the tumor is indeed putuitary.

the neuro endo is from columbia, and i thought shed be decent..the only doctor i trust now a days is my primary care. god bless her she's a great woman.

i think cushings is a possibility. im only 6'2 175 though, and have a crap appetite. i have heard of slimmer people getting it too though.


mrs aristotle, headaches,blurry vision,high cortisol,an gi symptoms, all do relate to pituitary disorders.

my primary care does not think i have somatization disorder. she truly believes me. i was thinking of asking her for a repeat 24 hour urine test.

[thyroidian]

Another thing if this neuro endo, has nothing to offer you, what you do is get in touch with the big leading hospitals, and try and find the best neuro endo you can.
If you are not happy then you move on........ and find the next doctor, dont waste your time with dead beat doctors.

You problems need sorting out, i have come to conclusion, i dont waste time with the doctors who fob you off. I move on til i find one who will listen.

Nicola

[thyroidian]

Have you not thought the second MRI which didnt pick-up the tumour, may be a less powerful MRI? which didnt show the tumour up.

This tumour was it found on the pituarity gland by anychance?

You also mention your cortisol is out of range along with creatine? was this high or low?

To much cortisol can be a sign of cushings syndrome, and to little can be a sign off addisons disease.
Have you had a suppression test done by the neuroendo?

I just thought the MRI, used the second time wasnt as strong and as good as the first MRI scanner? unless both scans where done on the same machine?

Good luck

But hold on in there, and i know sometimes we all feel like throwing the towel in, but remember if we do, they have won us, and on here we are fighters.......
Dont give up stay strong, it took me 12 years, of pain and misery,,,,, and i felt like you, but im a fighter, and wouldnt give them the satisfaction, off winning me...

Im sending you my weel wishes, this forum, is great, and offers some good support, to keep you strong along with medical help, so you are in the right place.

Take care
Nicola

[MrsAristotle]

Thank you faith for that post, it is what I have in my clumsy way been trying to tell him.

To:

Testdeprived.

What Faith has written above is what I have been trying to tell you but she has written it better then I.

Going in with loads of symptoms just looks like you have somitization disorder written all over it which I dont believe is true.

There is more than likely a small tumour, but it is being lost not just on the MRI but with your anxiety as you are presenting with loads and loads of symptoms which bear no relationship to the problem.

I have never ever said it is just over training but you agreed with me you dont eat properly.

Just try for 1 month to eat well and not to train but follow faiths suggestion above you might just find that you can eliminate a lot of the symptoms and end up with the main one which will point you in the right direction.

If you want to get well you sometimes have to look outside the box thats all I have said to you....ok.

[faithhopegreatestlove]

Hi Testd,
I truly empathize with the frustration you are going through. Your GP should be able to send you to a research facility, based in part on the contradictory findings. And, the GP can order whatever bloodwork you need for additional documentation that there is something going on that could/should be explained.

If I may suggest a few things to you, and take this from just a fellow traveler:
Start journaling your activities, diet, exercise, mental/emotional status, and symptoms. Do it for at least a month in a systematic, unemotional way.

Try to incorporate some changes, also in a systematic/documented way. It might help you to see patterns of which you were not aware and may give you a way to approach either your GP or another doc.

Here are just a few things you could try and see what happens: You could try changing your eating habits for one week, or for one week change your exercise routine. Do yoga for a week rather than lift. See if it changes how you feel. Try replacing something in your diet with something you know if really nutritious. Stop taking a supplement for a week, and try something else.

I would start off with a list of 5 things I am willing to try to change and timelines for these, then get busy with the journal and 1 change at a time.

The keys are experimentation and documentation. Doctors use our emotional reactions against us, so try to make sure you develop something they can see as more empirical and less experiential. They seem to see any emotional reaction as a sign of psychological pathology. So, get as mentally healthy as possible and take charge of your health.

Does that make sense?

I understand your frustration, but you can't give up or be closed off to learning something about how you can better manage your health _while_ you are in this seemingly never-ending limboland. Lord knows I've felt like giving up a few times myself, but hang in there. You aren't 90 and you have many years left in your not-working-at-peak body.

Forgive me for sounding so much like a mom, but you are about the age of my children and my heart goes out to you. Hang in there!

--faithHGL