The Trials and Tribulations of Getting Diagnosed!

“Worry never robs tomorrow of it’s sorrow. It only saps today of it’s joy.” -Leo Buscaglia

Navigating the medical system while getting diagnosed with anything can be an interesting journey into the trials and tribulations of worry, anxiety, fear, confusion, and uncertainty. Even when you get a diagnosis, you sometimes get un-diagnosed then re-diagnosed when you see new specialists! For some wild examples, see my previous blogs about being undiagnosed by a different neurologist then re-diagnosed…then again this year…my MS diagnosis was questioned by a new specialist, and re-confirmed by my regular neurologist.

You see…I have MS – no, now it’s a brain tumour. No, wait – Now it’s MS. No, wait – now it’s possibly MS and more, maybe still a brain tumour, maybe a genetic tumour disorder. No, wait – Now it’s MS and a seizure disorder…but it’s complicated.

Frankly, I feel blessed that I have a scientific side to me that allows me to question doctors and medical specialists with no fear, no apprehension, and all the confidence of a know-it-all science geek. Geeks rock, eh! A lot of that confidence I have learned through some pretty hard knocks over time, and some very real frustrations, but that is part of this journey we call life.

Recently, I had the dubious pleasure of undergoing a sleep study to determine if I am having nocturnal seizures. Quite the experience to be hooked up to electrodes and straps and clips, then “tucked” into bed as you are plugged into the wall. Then a quick “nighty-night” and the door is closed, leaving you staring in the dark at a little red light – the camera that is watching you. (I swear, if anything weird turns up on You Tube…)

Will that help further my diagnosis? Well…maybe. Maybe not. Right now, my epilepsy neurologists think I might not have MS due to my atypical brain scan, but that I do have a seizure disorder and maybe something else that looks like MS. Meanwhile, my MS neurologists say “P-ffft” to that…that I do indeed have MS as confirmed by the spinal tap results, symptoms, and brain scan. (A possibly quick way to let the docs settle the academic question of MS or not MS would be to let them biopsy my lesion…but, I think a needle in the brain is a bit of overkill for academic reasons, don’t you?)

I don’t care whatcha call it – just let me get on with my life, eh? I’m busy living here!

You see – that is often the hardest part of waiting for a diagnosis: getting on with your life. I have learned over the years to just let the medical teams battle it out on their own while I get on with the business of living my life. Whether you are awaiting a diagnosis for something small or big – the wait can be very difficult.

How to get through the long Diagnosis:

1. Know that no one is better qualified to know about you than you.

2. Gather your own information. Read. Surf the ‘Net. Knowledge gives us a sense of personal control – if nothing else that helps you manage your reactions.

3. Practice patience. There will be set backs, successes, frustrations, little glimmers of light at the end of the tunnel.

Yes – doctors know alot of stuff. But doctors are only human – and they are just as prone to human foibles as the rest of us, including making mistakes or incorrect assumptions.  Nobody knows you better than you do. Keep that always at the top of your mind. Be willing to ask the uncomfortable questions, both of your medical team and yourself. The answers may surprise you.

“If you worry about what might be, and wonder what might have been, you will ignore what is.” ~Unknown

Namaste

Carolyne

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4 thoughts on “The Trials and Tribulations of Getting Diagnosed!

  1. My mother was diagnosed with MS last year. It’s been a crazy time. We thought she had a stroke. Turned out to be Bell’s Palsy. From the testing they did at the hospital because of that, they found that she has MS. Since then, there have been other opinions. Second, third, fourth… You know. There have been hypotheses. It always comes back to MS. It’s difficult to deal with. Seems like the symptoms won’t go away. The medicine is ridiculously expensive.
    I’m glad I came across your blog. I’m hoping I can learn more and more from you, and be able to pass it on to her. It’s really been a rough time, and anything to enlighten or make this any easier is a blessing.

  2. What a story you have. I can relate. One doctor said that I have Common Variable Immune Deficiency and started me on monthly infusions. I had them for three years and never saw improvement. I also have Bronchiectasis, lung disease. The first doc waited around so long that by the time I got to the second doc, he diagnosed it in 5 minutes and said he wished he had seen me a year ago (as do I!). We went to Duke University in North Carolina and I had more blood work that I thought was humanly possible, and tests and scans. Guess what. Nothing new really. They questioned the type of immune deficiency but think that I have one. They were not so big on the infusions so I stopped those. yeah! They did agree on the lung disease.

    I have been through 4 pulmonologists. The first one did not help at all. The second one had the right diagnosis but there were things about his bedside manner that bothered me. The third doctor was very kind and spent a lot of time listening. But he put me on an inhaler that took the amount of steroids I was inhaling up too high, and I had pseudo-cushings for a year. (round face and round body, as if on prednisone for a year). The fourth one, age around 70, has been the best one so far. He is appealing to my health care so that I will be allowed to take the medication I need in my nebulizer.

    So frustrating, to go to so many doctors, get the hopes up, just to have them down again. My internist had a CT done STAT on Friday, because of my blurry vision, eye pain, and terrible headaches. She did not call Friday night so I am assuming that means no brain tumor. But I thought that I would hear today what the scan did show. I have left a message for the nurse and have still not heard back.

    On and on it goes. While it is not MS, it is still complicated and has a huge impact on my life. Waiting is difficult……

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