I Am Getting Closer To Diagnosis!

[Debbie Rose]

Hi, I am Debbie and I am 60 years old and an RN. I have been convinced I have a dysautonomia of some sort for many years. In '86 I ruptured 2 discs in my neck. I refused surgery(not a success back then) and it eventually stabilized.

Somewhere in the early 90's I started with fatigue, joint pain, muscle pain, migraines or milder headaches every day along with depression. In '95 they told me I had fibromyalgia with sleep apnea so I wore a c-pap and eventually had gastric bypass and lost 110 pounds-no more sleep apnea and much less pain. But my fatigue, brain fog, memory, focus and concentration issues stayed with other symptoms popping up as I went and made adjustments with my life and job.

In 2009 I spent the afternoon at the ball field with the temperature in the 70's and sunny. That night I was very fatigued and the next day I could not move, the fog and fatigue was severe, my arms and legs heavy with whopping migraine. Saw my PCP and she was concerned with MS probability and a brain MRI showed 2 lesions. Labs showed no titer for Lyme's but positive titer to EBV

Moved to NC for family reasons and so had to continue my evaluations in NC-long story short-MS was ruled out-but hey! 2 brain lesions!!

Less than a year later I get up from lying down to let the dogs out and my BP plummets, my heart races, I get short of breath, my legs get wobbly and I get chest pain-what is going on?!? And each time I get up too fast -BAM!! So I go to cardiologist-normal stress test, echo basically OK too. Put me on a Beta blocker and told to take more salt. Well beta blocker made me so fatigued I couldn't get out of bed. So I went on with more adjustments to my life and job

Almost 2 years ago now, I started looking into causes of these symptoms-UNC Cardiology, had a negative experience. Referred to Duke Cardiology.

In the meantime my PCP checks my labs and my chronic anemia is a little worse so Colonoscopy was overdo-done-negative. Seeing therapist who thought I needed to se Psychiatrist and also set up an appointment with Neurophysiologist to be tested for memory, focus and concentration issues-tests showed I was normal based on my age et al. Of course I was well rested and unstressed too. I think that with symptoms of POTS the equation changes, especially with anxiety.

EVERYTHING! Takes Forever!!

Duke cardiologist did BP's lying, sitting and standing (and saw the changes) and asked a lot of great questions and suggested I might have POTS and was going to start me on the new med IVb... something but one of my meds sent up an alert. But he did send me to Duke EP Cardiologist Dr.Daubert who finally said it sounds like POTS and started me on florinef. He also informed me that they now have a Dysautonomia doctor and 2 NP's too and I have an appointment Oct.30th YEAH!!!!

The florinef was fantastic for 2 and a half weeks-No fatigue, better bowel and bladder normalcy, better hearing, less drop in BP or other symptoms were less too! I finally felt totally normal-no depression and no fatigue and able to do things I haven't done in decades! But them the dose slowly stopped working. The doctor was willing to go up by half a dose and being careful to monitor my BP and get labs done. So just started it yesterday

So that's me-with all the ups and downs. Glad to be here sharing and learning

[kellygirl]

Glad you are here.

My symptoms are much worse with stress and anxiety. The endocrinologist told me that he had never seen anyone with such high cortisol levels as mine. My POTS came to the surface after making a major unwanted move out of my home town of 30 years and the multiple stressors I faced during the months following the move. We moved in the of Feb and by July my body gave out. The docs here did a very in depth medical history and ordered all records from all doctors ever seen in my home town going back to 1999 and found the dysautonomia had been in play for at least that long if not longer (possibly as far back as 1987 when I was sent for electromyleogram of the legs due to mottling and leg pain and cramps (nerve conduction was normal on the test), but I remember my legs being blue with mottling which is what sent me the doc in the first place. Had migraines since I was 6 years old. Severe exacerbation from the time I was 25 until I was 31. In the ER at least 3 times a week receiving demerol, benedryl, phenergan and IV fluids. Diagnosed Bipolar with Major depression and anxiety in 1993.

I am also a RN, but unable to work due to the fatigue and brain fog. I would never dare to pass meds or do any nursing task with my lack of mental acquity, and most certainly would never make it through a 12 hour shift! I miss work though.

Keep us posted on the florinef progress.

Glad you are here!

[kellygirl]

also wanted to add, I guess I am lucky that I wound up moving where I did and went to the hospital that I went to, as it is a teaching hospital for a major university and the docs and residents are up on things like POTS and dysautonomia, they had me a diagnosis in under a week! And finally I was told by a doctor that I was not crazy. If I had been back home and this happened, I would still be in the dark!

[Debbie Rose]

Hi Kelly,

I know!! It was so wonderful when the Neurophysiologist and the Duke EP Cardiologist stated it sounds like POTS...Finally !! I am not crazy!!

As my health declined I changed positions a lot. In hospital from Cardiac Telemetry to floating Admitting Nurse (initial admissions paper work and assessments-a lot of sitting) Then to night supervisor at Genesis Healthcare and briefly as a dialysis nurse.

My present job is a work from home Telecommunication Case Manager with a national insurance company. I worked for a similar company-same function but condition care at a telephonic office setting -they moved out of state so I found the other job-took several interviews but it was worth it.

At first the job was great and I was really good at helping my members. But suddenly last November the company chose to add being a Case Manager to the job requirements and all of a sudden there was so much more to learn with rules and certain questions to ask on each call. And suddenly the stress of it, along with the care of my Mom with her progressing dementia, and my sister (with some mental issues herself) needed to move back in-all that stress just sent me over the edge with severity of symptoms.

I am hoping some meds could help me to get back to work at least part time. My Mom is now in a facility and my sister is doing well. But my symptoms change each day right now-no way to gauge my ability to work. Yet I am the only one taking care of me...I would loose a lot if I couldn't work

Sorry but I really needed to get that out there. I try to just take things a day at a time right now

Thanks for listening

Debbie

[corina]

I'm sorry you're having such a tough time Debbie. I hope that once you'll have a diagnosis, your health will improve and you'll be able to get back to work! Keeping my fingers crossed for you!

[SarahA33]

Hi Debbie, welcome to the forum!

I hope that you'll find relief soon with the various medications that you are trying. The trial and error is an exhaustive process from my experience, but it's paid off and I'm grateful that I've got doctors who have been and are willing to keep trying. I will hope the same for you.. Like Corina said, our fingers will be crossed for you!

I'm also sorry to read that you've had a lot going on in your world regarding family. It sounds as though things are going better though, which hopefully takes some of the weight off of you and allows you to focus on getting well and healing.

Sarah