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In Memory of Ryan Tyler Monds ~ September 4, 2016

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in-memory

 

RYAN TYLER MONDS (FONZ) December 29, 1981 – September 4, 2016 Ryan passed away peacefully and is free from illness and pain. Heartbroken by his passing are his mother Anne (Dave); father Ron (Charlene); brother Cody; stepsisters, Emily and Grace (Kyle); and nephew Nathan.

ryan-mondsAlso mourning his loss are aunts, uncles, cousins, many life-long friends and friends through Cushing’s Disease Awareness.

Respecting Ryan’s wishes, there will be no funeral service. A private family interment will take place at Sunnyside Cemetery.

Donations to Siloam Mission in Ryan’s memory would be greatly appreciated.

Goodbye came too soon. We love you. Miss Me But Let Me Go When I come to the end of the road And the sun has set for me, I want no rites in a gloom-filled room, Why cry for a soul set free? Miss me a little, but not too long, And not with your head bowed low, Remember the love that we once shared, Miss me, but let me go. For this is a journey we all must take, And each must go alone, It’s part of the Master’s plan, A step on the road to home. So when you are lonely and sick at heart, Go to the friends we know, And bury your sorrows in doing good deeds, Miss me – but let me go.
As published in the Winnipeg Free Press on Sep 10, 2016

P. Hyde, Undiagnosed Bio

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48 years old. Male. Had prolactinoma pituitary tumor in 2000, it enfarked. 7x8mm. On testosterone replacement since as it destroyed my bodiea ability to produce testosorone.

Started what appeared to be a battle with Cushing’s symptoms fforin 2012. Shown all symptoms of episodic Cushings. Finally ain 2018 a new 4mm mass appeared on my pituitary midline and is growing.

However I have only been able to get just one positive saliva night time cortesol test so no one will look at Cushing’s. I am taking 1.5 mg of Klonkpan daily and think it may suppress the cortesone and squew the labs especially the suppression test. At this point I can feel the cortisol Jump in the evening. The only thing that stops the terrible sick feeling is my scheduled dose of Klonipan.

I started a seveir crash in March or 2020. Hematacrits started rising uncontrolably and made it to 62 percent by August of 2020. Blood pressure is not controllable when episodic. By August made it to 190 over 120. Had a cardiac Event in September 2020 from all the symptoms. And had Gained 26lbs in 4 months. Fatigue and foggy thinking so bad I can hardly function when episodic. Episodic now most of the time. Can hardly work and body is done by 3 PM every day.

Each time I have a dextramazone suppression test I get a 3 to 4 day respit like the ACTH is reset and I feel normal and symptom free. My blood pressure returns to 130/80 and my life seams to be ready to go back together. This all from 1 MG of Dextramathasone one evening then I get 3 or 4 days if life back. One half a pill. No one can tell me if the Klonipan will produce false negatives and have not asked me to adjust.

My sleep cycle is from 11 PM to wake at 4 AM sick as a dog most days. The Serum cortisol levels they will not take until 8.00 A M. I am always feeling better by 8 A M. They will not adjust the time they take the suppressed serum sample and my result is always .8. They say if not over 5.0 they won’t consider surgery or treatment I’d any kind. My ejection fraction rate from my heart is now at 30%.(should be at 75% for a regular person my age) two more points down and I qualify for a heart transplant.

This is crazy. No one can figure out what is causing any of this but every symptom points to cushing’s. ESPECIALLY the symptoms all becoming acute when the Tumor appeared on the MRI.  I have been tested for virtually every illness known to man. My endocrinologist still believes it could be episodal Cushing’s and is supporting the tests. But no treatment. I am dying. I will surely be dead within one more year as they won’t provide a heart transplant unless they know the cause of the reduced ejection rate. So they throw drugs as me over and over and all the beta blockers and channel blockers almost kill me because I go off episode and my BP drops to 90/40.

But Without 3 positive Cortisol tests they won’t consider Cushing’s as even a possibility. Have been to every specialist you can see. Had every part of my body scanned. I am dying. My boys have not had their father in years now. My business has been hobbled as I am the CEO. Hiding my illness from competitors and over zealous vendors is harder than anything. Now I am finally losing all my best people because the promises I will be back to my old selve again no longer seam real when I am just fighting to stay alive.

One doctor claims it’s all sleep apnea. The sleep studies show MILD sleep apnea.  And they only showed that after the most current wild events and weight gain. Help. Please help. People need me. I am not afraid to die. But people need me. I serve so many roles and what I do helps thousands of people . I can’t be done providing in this life. I want to be a real Dad again. I am a shell of a man and dying. All the doctors tell us “when you find out what is wrong with you comeback and tell us so we can shift our treatment.” They have all given up on me.

Please someone Help. . Klonipan question is the biggest one now. Money is no object. I will give up everything and anything to have these years with my family. Even just a month of being myself before I have to go. Mayo clinic won’t take me because I don’t have the positive Cortisol x3.

 

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In Memory: Ryan Tyler Monds ~ September 4, 2016

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in-memory

 

RYAN TYLER MONDS (FONZ) December 29, 1981 – September 4, 2016 Ryan passed away peacefully and is free from illness and pain. Heartbroken by his passing are his mother Anne (Dave); father Ron (Charlene); brother Cody; stepsisters, Emily and Grace (Kyle); and nephew Nathan.

ryan-mondsAlso mourning his loss are aunts, uncles, cousins, many life-long friends and friends through Cushing’s Disease Awareness.

Respecting Ryan’s wishes, there will be no funeral service. A private family interment will take place at Sunnyside Cemetery.

Donations to Siloam Mission in Ryan’s memory would be greatly appreciated.

Goodbye came too soon. We love you. Miss Me But Let Me Go When I come to the end of the road And the sun has set for me, I want no rites in a gloom-filled room, Why cry for a soul set free? Miss me a little, but not too long, And not with your head bowed low, Remember the love that we once shared, Miss me, but let me go. For this is a journey we all must take, And each must go alone, It’s part of the Master’s plan, A step on the road to home. So when you are lonely and sick at heart, Go to the friends we know, And bury your sorrows in doing good deeds, Miss me – but let me go.
As published in the Winnipeg Free Press on Sep 10, 2016

Michael B, Pituitary Bio

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May 2015 diagnosed
June 2015 ipss
Sept 2015 transsphenoidal surgery fail
January 2016 metyrapone
May 2017 mri and seen something but in a dangerous place
Aug 2017 gamma knife
June 2019 waiting for gamma knife to work

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Tim D (TimD), Undiagnosed Bio

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I’m going to tested and pretty sure i have it.

I don’t know what to put here except I was am glad I finally getting tested since reading stuff on the net I see I have a lot of the side effects and it sorta clears things up some,

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Brian R, MENS Bio

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I became sick July 2014, August my family physician sent me for blood tests etc. by September, I saw thyroid surgeon, had CT and MRI of head throat area. I went to local hospital for the tests. The tests were inconclusive. Bad equipment, I later found out.

Surgeon said we should monitor condition and wait or we could do exploratory surgery. I CHANGED DOCTOR.

Next I went to Nuero for tests, nuropothy had already set in my legs and I was falling all the time. Rapid weight increase, tired and cramping all the time, irritable and miserable. She sent me to endocrinologist and more tests, definitely showed para thyroid adhesions, had surgery in October 2015, didn’t do both sides and would have to have surgery again in December.

Returned to work and immediately tore my shoulder muscles and was finished from work, (Workman’s comp) fought having a MRI, I did it anyhow, went to surgeon and he wouldn’t operate because of my health issues.

In December they removed the growth on other side of para and a lump from thyroid. Four days later I became wheel chair bound.

Now we scheduled the pituitary surgery for February. Wednesday was the surgery and I could get up from bed the next day and walk. (I thoight it was a miracle) Discharged Friday, went for blood test Saturday and tried to get some rest.

By Wednesday I returned to the emergency room with 103 temp and sleeping all the time. They put me in ICU and I spent the next 10 days there.

Upon release we treated the body shutdown with cortisol steroids and continually adjusted my blood pressure meds. Three months later I started therapy to learn how to walk again. I would fall if I turned my head, left or right. Balance and equilibrium was really bad.

I finally returned to play golf in October, exactly 2 years from my first surgery. Weak, but I was able to drive, walk, (gingerly) and socialize.

It is a terrible disease and in July this year I felt it was back and blood tests confirmed my fears. I won’t go into my current conditions.

We all know how this saga plays out.

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Faith’s Husband, Pituitary Bio

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My husband has Cushings, has had 2 pit surgeries, radation, and is still not any better.

We go to MGH Boston, love our endocrinologist, just wish we would see progress.

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Paul M (Paul), Pituitary Bio

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Hi All,
I was diagnosed 4 years ago. I had extreme weight gain despite a very physically active life style. I would require less than 2 hours a night of sleep. Eat less than 1,000 calories per day and exercise 3-5 hours a day. I had the emotional swings as well. I would bruise or cut very easily. Doctor suspected Cushings after I displaced my knee cap for the second time due to Patella Tendonitis.

Months of testing resulted in what the doctors considered a low likelihood for positive outcome, the surgeon (supposed to be one of the best) agreed to remove the tumor either way. It was filling the Sella to the point it was pushing on my pituitary. It was wrapped around my optical nerve and would probably cause problems with my eyesight.

I was told that I would be back to work in 3 weeks.

Post Surgery my Cortisol levels never rebounded. The doc gave me 10mg of cortisol with no affect. Then they gave me 40mg and I could get up to go to the bathroom. Within an hour levels were back down to 3 (whatever).

They put me on 80/40mg of Cortisol for morning and noon each day. I still was basically unable to move. After 1 year. I was off cortisol and passed the suppression test. And still wasn’t losing weight, felt sick all the time.

It appears my anterior pituitary gland has not recovered. I don’t make enough TSH or the hormone to induce Testosterone. I took the Gel for testosterone with poor results. My thyroid tests are considered inconclusive. I try to feel out my thyroid dosage. Now I get testosterone implants. They seem better.

Basically put, four years later I feel almost as bad most days as before the surgery. Weight gain is still an issue. The major differences are, I sleep really well. I don’t bleed at the touch. My feet are very week, I could sleep 15 hours a day.

 

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Alex C (Alex C), Undiagnosed Bio

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Hi, My name is alex and i honestly have no idea what’s wrong with me.

about 5 years ago i became ill, all of a sudden went from a healthy strong active person, to feeling weak, tired, i gained weight, my hair started thinning, among other symptoms, i was diagnosed with diabetes, my sugars were in the 500’s then one day about 6 months later, my diabetes went away, no change in diet, no change in lifestyle, just up and went away…but it was replaced with excruciating pain, throughout my body mainly in my legs and arms, they said its pribably neuropathy… but i had only been diabetic for 6 months, they tested and found no neuropathy…they said it might be MS, they tested nope not MS….they said it might be fibromyalgia…i don’t have trigger points no not fibromyalgia,,,i started getting infections….gum disease…eye infections… bites and scratches on my legs which used to heal quickly no longer healed and when they did they left scars and marks on my skin….the pain was so unbearable… they tried all the neurological meds, cymbalta, lyrica, etc….. nothing helped…

finally they gave me fentanyl patches and norco and i was able to manage the pain… but still no diagnosis… i saw hemotologists, oncologist, because at one point they thought i had luekemia which i dont… i saw a rheumotologist and nothing…my pain management doctor said i had a bulging disc in my back and wanted to give me steroid injections in my spine…he said that’s whats causing the pain….but the pain was in my legs and arms a bulging disc in my lower spine would cause pain in my legs and lower back only so i disagreed with his assesment…still i got 1 injection and it didnt help… he said oh it could take up to 3 for you to feel relief i refused the injections and he stopped giving me pain meds, he said since i wasn’t cooperating he couldn’t treat me anymore… so i suffered

one day on an emergency room visit i saw a doctor and told him my symptoms… (i would tell any doctor that would listen to try to find something.. i know something is wrong with me) he said have your pcp test your cortisol levels….well my corisol levels were 5 times the normal count.. they did the test twice…and both times they showed 5 times the normal level…now i don’t have the moon face or the buffalo hump but i do have every other symptom of cushings…i went to and endocronologist who right away said… you don’t have cushings…this was over the course of the first 2 years… now 3 years after that and 5 years from the start i’m still suffering the pain i’ve gotten used too for the most part but sometimes it;’s sooo bad i have to go to ER and get morphine and dilauded to help…last week i was in the ER and they gave me 3 shots of IV morphine within two hours and it only lasted about 20 minutes..each time… finally a shot of dilaudid helped and i was able to come home and rest ….. still no difinitive diagnosis other than chronic pain…and my diabetes has come back recently…i no longer see doctors because i have never gotten help from them…i’m lost and don’t know what to do anymore…if it wasn’t for my kids.. i have 3 i don’t think i could go on…invisible illnesses are real and devestating…

 

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A New Newspaper Article on Jordy

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Today’s article: Father-of-two, 42, who was scared of heights now skydives from 17,000ft with NO FEAR after surgeons removed his ADRENELIN gland

Mr Cernik suffers from ultra-rare Cushing’s syndrome which causes high levels of the hormone Cortisol – a steroid that regulates the metabolism and immune system.

In just three years, former Territorial Army recruit Mr Cernik, who is 5ft 8in tall, ballooned from 11st 5lb to almost 17st.

To treat the condition, Mr Cernik underwent a series of brain operations and two procedures to remove his adrenal glands, which also produce adrenalin….

Read more: http://www.dailymail.co.uk/news/article-4418714/Father-two-42-no-fear-operation.html#ixzz4ebhHkMsI

Read more about Jordy.

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