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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Jul 07, 2017 @ 14:54:35
Hi Alex,
I am so sorry to hear about all the pain you are going through. I too am in the same situation and also have been dealing with constant pain for 6 years now, been bedridden for about 4. I’m pretty sure my pain is unrelated to my Cushing’s– terrible pain in/ behind my eyes. They feel like they’re ripping if I move them. I’ve been through the process of test after test, surgery after surgery to no avail and no answer or relief from my pain. I have about 90% of the symptoms of Cushing’s including cataracts in both eyes and I am only 26. Believe me when I say I know your pain and frustration. I am in the process of being tested for Cushing’s but in my heart I know I have it. It’s frustrating though because many doctors don’t know the first thing about testing for cyclical cushing’s.
What I am wondering is what happened after the test confirmed that you had 5x higher than normal cortisol levels? Did you receive any scans because a level that high is pretty confirmative. I have had an MRI which came back as a normal pituitary but I had to write to and question the radiologist about a spot on my pituitary that looks exactly like the ones when you google pituitary microadenoma. He wrote back stating that the MRI he had read “didn’t show evidence of Cushing’s” but also told me that he didn’t know there was concern for Cushing’s and the MRI that was ordered was not one to assess the pituitary gland accurately! So long story short, the correct MRI is called a Dynamic Pituitary MRI and has the best success in detecting adenomas. I would push to have this scan and also more testing to figure out if the cortisol excess is coming from a tumor in your pituitary or adrenal gland.
I will keep you in my thoughts and prayers. Keep me updated as to what is next. There is a light on the other side and we both will get there!
Stay strong!
-Annie
Oct 10, 2017 @ 13:04:48
Hi Alex I am a specialist in rare disease and you need to find yourself a good endocrinologist that will take screening for Cushing’s seriously. Demand an overnight Dexamethasone suppression test to start. Ask to get both a cortisol level in addition to the Dexamethasone level. Your cortisol should come back at less than 1.8 and the Dex level should be 200 or above. If the cortisol is over 1.8 there is evidence of excess cortisol. If that’s the case, ask them to measure your ACTH. Anything below 15 is low and anything above 60 is high. The Dr may also suggest a late night salivary test. Do at least 3 of those on different nights. Don’t bother with a urinary free cortisol. It’s cumbersome and the other tests will tell you what you need to know. If these tests come back positive, you’ll want to get a CT scan of the adrenals (if AcTH was low) or an MRI of the Pituitary (if AcTH was high). You should know there is now a good medical option for hypercortisolemia (Cushing’s) and/or surgery that is often curative. Good luck.
Dec 22, 2017 @ 19:30:51
Could you share what the new treatment is, please!
Feb 01, 2018 @ 22:05:22
I think he might be referring to Korlym? Although that’s been out for a few years