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Why is it such a struggle to be diagnosed?

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Old 03-24-2016, 10:08 PM   #1
Join Date: Mar 2016
Location: Kingston, Ontario, Canada
Posts: 1
GioDG HB User
Why is it such a struggle to be diagnosed?

It's been a battle ever since this began. Forewarning, my post will be long, and it will likely be difficult to understand in some areas due to my lack of concentration and mental cognitive abilities, but I'll get to that later.

So I will start off with a bit about me. I'm 21 years old, currently in Ontario, Canada. I have been diagnosed with Major Depression (2011), Generalized Anxiety Disorder (2011), Post-Traumatic Stress Disorder (2011), Migraine Headaches (unsure of diagnoses date however had spread throughout childhood and grew more frequent in my adult years), Grave's Disease (2013), Hyperthyroidism (2013), Hypothyroidism (2013 due to Radio-Iodine treatment). These are my fully diagnosed conditions, however I have other conditions that are currently in question.

I have multiple tiny lesions in the white matter of my brain, technicians indicated possible early onset white matter disease. I also have a large variety of neurological symptoms consistent with Multiple Sclerosis, so though my MRI's of my brain show lesions they aren't in the area required for it to be MS, I am still awaiting further MRI scans of my spinal cord for other lesions for more possible evidence. Though I haven't been diagnosed, the MS clinic agreed to take my case for treatment this coming August.

Previous serious illnesses or surgeries would only consist of two incidents than I can recall off-hand. I had a breast reduction surgery (2014) with little to no complications, I believe I may have had a small infection, but nothing of concern, I believe I was on antibiotics. The other serious illness that I had was when I volunteered at a local wildlife rehabilitation centre. I had just had my wisdom teeth removed and was given a preventative antibiotic for any possible infections, well I got an infection anyways. So onto a second type of antibiotic to get rid of the current infection in my surgical wounds. While at the wildlife centre, I was working outside feeding the squirrels, a bee stung me and bacteria got into the wound. The wound got swollen and red and I was concerned it was an allergic reaction so I went to the hospital. While in the hospital they said the sting-site had gotten cellulitis, and I received my third type of antibiotics within a 1-2 week time span. Unfortunately, the bout of illness didn't stop there and due to me visiting the hospital after being on so many antibiotics, I contracted Chlostridium Difficile which put me back in hospital with blood pressure ratings that seemed to read too low to be understood on the machine. I was pretty close to falling into a coma or my heart giving out on me. Scary stuff, but I recuperated!

So, I'll begin into the tale of my experience with what appears to be, and with Internal Medicine support, I may have Addison's Disease. I know the disease is rare, and the symptoms are very non-specific, however, everything clicks. Every symptom. Anywho, back on track..

It was about February 2nd or 3rd and I began to get diarrhea, it was happening 10-12 times daily. Two days later, still suffering from diarrhea, the vomiting began. The vomiting began, and it didn't stop. It was constant. For the first few weeks I could still eat and drink somewhat, but that has diminished as my condition has worsened. I went into the hospital five times within the past two months for dehydration, vomiting, diarrhea, severe migraine headaches, fainting, low blood pressure and quite a low pulse.

My first few visits were very uneventful. I mean, they gave me IV fluids, and gave me migraine medications, and ran basic bloodwork, but they essentially ruled my symptoms out to anxiety. I went home and went about life as much as I could, but I could feel myself becoming more and more unwell.

I again fell into a vomiting, diarrhea, fainting spell and I was rushed to the hospital hardly able to speak from dehydration and low blood pressure. Finally I met the doctor who gave a damn. He looked at my charts and said "What the hell were they thinking?" and asked me if they did stool samples, because they weren't showing in the record system, I told them no, they didn't. He asked me if they did anything more than basic testing (ECG - yes, abdominal x-rays - yes, in depth blood tests - I didn't know, MRI's - no), if they had even considered disproving there could be something underlying, after - it was now about 3 weeks into my illness.

He started to run further blood tests, that were more in depth and contacted Internal Medicine to take over my case as he truly believed there was something deeper than just simple anxiety . He was excited to find the blood results come back with some abnormalities pertaining to low cortisol levels. I can't remember what the exact figure was, but the initial ER doctor was ecstatic at the find and said he may have found the reason I've not been well for quite a long time. He said not to give up hope and give in to my anxiety and depression as he believed the mental health events were possibly due to this mystery illness.

He met with my assigned Internal Medicine doctor, who actually high fived him and said "Good find." It gave me so much hope that I had been missing, seeing my doctors being so excited with their findings and enthusiastic that if they know what it is they can treat it. It made me feel so much better.

I was rotated off of the ER doctors list and onto the Internal Medicine doctor's, as he had a waiting room packed full of people needing him. I gave him a teary thank you and good-bye as he finally gave me hope when, at that point I just wanted this illness to end. I know it was only 3 weeks at the time (approximately February 28th at this point) but it felt like it was never-ending and I just was getting ready to want it to stop. I had stopped eating solid foods at that point, and was trying to drink water when I could and drinking boost or ensure, as well health drinks that contained multiple vegetables so that's where I got most of nutrition when I could keep it down.

So I was under Internal Medicines care, and they did a blood test, at start time, 10 minutes, 30 minutes and then 60 minutes. I don't know the name of the test they conducted, but the doctor returned with the head of his department to show his case, and he seemed very pleased with his findings and his superior said that they had done a good job and that it was a good catch as it was typically missed. They gave me my migraine cocktail and so I was woozy as the doctors left and my doctor returned to give me the easier to understand version of the whole situation.

I remember adrenal insufficiency, and tests came back indicative, and aggressive prednisone treatment, and endocrinology referral, and it has something to do with my other autoimmune disease, and they finally were gonna get me some help. He then tried to explain how my medication regime would be for treatment of inflammation of the stomach, slowing down my digestive tract, and prednisone, however ever since they began the migraine cocktail, I had been conscious but barely coherent, trying my hardest to stay awake and pay attention but drifting asleep (additionally because they had to give adivan in addition to the migraine cocktail which caused drowsiness as well).

I was discharged the next day once my blood pressure was relatively normal, and pulse was okay, and was feeling well enough to walk. He sent me with a set of new prescriptions. Prednisone 5mg 3x/day for 3 days then to 1.5/day until gone (which I'm still currently on). Gaviscon 80mL 2 hours after each meal as well as a medication which I can't for the life of me remember, but would take it 30 minutes before each meal.

So as I haven't fully done so, I will summarize my symptoms as chronologically accurate as I can remember.
- Diarrhea
- Fatigue
- Vomiting
- Hair loss
- Weight loss
- Low blood pressure
- Fainting
- Chills and night-sweats
- Fairly severe mental fogginess, confusion and inability to remember
- Headaches and migraines
- Sudden bursts of energy at night, where I stay up and can paint the kitchen, or completely clean the apartment or bake foods and then back to low energy levels again

As of now, I think the prednisone is working against my body as though I had felt relief and lessened then to no vomiting or diarrhea for about a week and a half and things began to crash again. Symptoms now in addition to previous symptoms;
- Pain in abdomen, varying locations, unlike gas pain, but extremely difficult to describe
- Pain in mid to lower back that has gotten increasingly worse over the past 5 days
- Dark urine
- Extreme fatigue (though I sleep 10+ hours and nap throughout the day)
- Darkening around my eyes
- Additional weightloss
- Additional fainting
- Strange tightness or pressure on chest
- Strange feelings as though my heart will be really slow and hard or fast and light and general feeling of weirdness as best as I can describe it
- Constant light-headedness though I'm not active or will be seated or laying
- Strange overwhelming hot flashes that come over me, and I can't seem to find anything to cool me down that last 30+ minutes

I'm sorry that this is so long, but I'm 21, I'm frightened as I am withering away while in this forever wait for endocrinology, frightened that one day my heart will stop, or I will just fall into a coma. I have lost over 25 pounds since early to mid February, and am continuing to lose more unintentionally. My appetite is low again, so I have to force myself to eat. Today was the first I had eaten in 4 days.

I just want to learn more about this disease as I think it is now a part of my life. I hope I stand corrected, though I fear I wont be. I just really needed to fully get what all is going on out there, just so I can try to process it better and any opinions or advice anyone would have for me would be greatly appreciated.

I am just wanting it to all be over with and to feel normal again. I am looking for different ways to heal, besides the medicine provided by doctors, so I am seeking out yoga and holistic treatments. As well as awaiting the endocrinology appointment as well as an endoscopy that is to be scheduled. I feel hope, but just feel so terrible right now.

Thank you if you made it all the way to the bottom. I apologize for any grammar issues or if it is at all confusing to read. Lately my mind has just been a blur, so forgive my scattered thoughts.

I look forward to getting to know others in the community.

Last edited by Administrator; 03-24-2016 at 10:38 PM.

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Old 03-31-2016, 12:04 PM   #2
Join Date: Mar 2016
Posts: 8
Desperate17 HB User
Re: Why is it such a struggle to be diagnosed?

Did they ever mention Lyme disease?

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Old 04-27-2016, 03:14 PM   #3
Join Date: Apr 2016
Location: Texas
Posts: 1
Re: Why is it such a struggle to be diagnosed?

Hi GioDG

Sorry to hear of your struggles, hope this will help. Have they check your sodium levels ? Been through a lot of the same struggles you describe. finely diagnosed with Addison's disease 0n 2/15/1016. Have dealt with this for several years going to doctors and not getting diagnosed right. it took two emergency room visits, the second is where they found it. The first one was on 8/1/2016 they did blood work/ cat scan / etc and said i was dehydrated and had Hyponatremia ( low sodium ), went into crises with the second E.R. visit, this one was adrenal failure. They gave me 20 mil pridnisone once a day for 15 days on the first emergency visit. I felt great for about a month and half but then started going down again. My symptoms were, on both times , extreme fatigue, sever weight loss, darkening of the skin, low blood pressure, salt graving, nausea, vomiting, constipation, abdominal pain, muscle and joint pain, along with confusion and dizziness along with chills and sweating at times. When I read your post can relate to the frustration of getting doctors to find the problem, and getting to see the Endocrinologist. I also have stage 2 kidney failure from this. There is so much more to this I would end up writing a book on the matter, but I hope this helps some and that they find the problem soon. Forgot something important, The second visit they put me in the hospital for 4 nights and 4 days. During this time they took blood every 4 hours on the hour along with lower MRI and chest x-ray. It took all of this too get the actual true Addison's diagnoses, I was extremely blessed to have had a E.R. doctor second time suspect Addison's.

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Old 08-04-2017, 09:59 PM   #4
Join Date: Jul 2017
Posts: 6
chillibell HB User
Re: Why is it such a struggle to be diagnosed?

I hope you are feeling better. A few years ago, I experienced similar to you. I was diagnosed with Addisons disease, then undiagnosed. I ended up finding out that all my symptoms were caused by high calcium in my blood.

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Old 04-18-2018, 12:09 PM   #5
Junior Member
Join Date: Oct 2009
Posts: 13
Angry Re: Why is it such a struggle to be diagnosed?

Feb 28, 2018, I lost consciousness and fell flat on my face. In ER they found an adrenal hematoma (internal bleeding. I was admitted for a few days, & released. About a week before this fall I had fallen badly bruising my back, and a few days later starting feeling off.

I started having wild blood sugars, and had to lower my insulin doses by nearly 1/2. I did get my sugars stabilized, again, (I had been stable for the preceding decade) with the help of a new CGM, but it was not easy, I do NOT have an endo. I lost my last endo when they closed the local diabetes center. I can not get back into an endo till the end of August.

In the meantime, Not one single doctor will do any adrenal function testing. I did get an Rx for 8mg Zofran for the nausea, It works, but I still feel crappy most of the time. I barely was able to drive home from the grocery store a few days ago, (almost did not make it home)

What is it with DOCTORS today?

Known adrenal damage, via CT scan, extent, beyond the hematoma unknown, and untested, and they ALL say it will heal on its own and adamantly REFUSE, to check it!

In the mean time, 2 months and counting, I am going thru h311!

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