In the dark and in the unknown…

This is a very hard post to write.  Not only because of its contents but also because of the way recent events has left me feeling, which is very down if I am to be honest with you all.

This is because last Tuesday, I had yet another hospital appointment with the neurological consultant that I am under.  The purpose of this visit was a follow-up on how I have progressed since the last visit but also to find out the results of the tests that I have had conducted as well as the findings from the other consultants that I have seen, since the last time that I saw him.  All of the test results came back clear, however and as a result we are no more closer to finding a diagnosis than we were before.

Of course, it is a relief to know that there isn’t anything seriously wrong, but at the same time I was devastated at the lack of positive test results and as a result no diagnosis.  During another neurological examination, when asked to slide my ankle down the opposite leg, the bent leg started going into spasm.  At this finding, the neurologist’s face became puzzled, but at this he could tell something is wrong but is at a loss what it could be.  Interestingly, he noticed findings that were not present during the last examination.


So what now?  Well, now he has decided to test for some genetic causes to explain my symptoms, including:

  • Dopa-responsive dystonia
  • Dystonia
  • Spinocerebellar ataxia

I think I am partly becoming down because of the unknown of this situation.  The unknown of what exactly is wrong with me as well as the unknown of what I am facing.  In my opinion, not knowing is often the worse than the reality.  If I had a definitive diagnosis, then at least I would have an idea of what may happen and to make plans accordingly.  However, not knowing is similar to being stuck in limbo; stuck in the middle of nowhere and at a lost as to the direction my life is headed.

“Not having a definitive diagnosis is like being stuck in limbo…” (Click to Tweet)

I am also worried that if the doctor’s are a loss as to the cause of my symptoms than they are eventually going to be labelled as being psychological.  It is true that in the past I have had problems with both depression and anxiety but I am positive that these were as a result of my undetermined condition.  For example, I know that the anxiety started after the dizziness – who would not become anxious after experiencing something so unpleasant and not knowing what was happening?  Then there were the thoughts that I should have asked more question, for example should I have asked for a MRI with contrast – could that have shown something a regular MRI would not?  Although I am worried about this, the neurologist that I am under seems to be determined to find the cause of my symptoms and is even willing to refer me to someone else in the department or even a possibility of being referred to a specialist neurological hospital in London.

But in the meantime, it looks like I may be stuck in limbo for the forseeable future…


So I am interested in hearing your stories of diagnosis…How long did you wait  for a diagnosis? If you are still waiting for a diagnosis, how do you feel about it?

Am also interested in the views of those living with the disorders that are mentioned above…How long did you wait to be diagnosed?  How were you finally diagnosed?

Feel free to comment below…


5 thoughts on “In the dark and in the unknown…

  1. I’m sorry to hear you’re in THAT stage of things. Where it’s clear something’s wrong, but there’s been no luck in finding out exactly what. I think that’s a process that a lot of us know too well. When I became sick two and a half years ago, it was incredibly frustrating to go through test after test only to have things come back normal, when clearly the amount of pain and fatigue and mysterious symptoms I was experiencing were anything but. It took a long time and a long search for decent doctors but I finally have the Chronic Fatigue Syndrome diagnosis. Not that that actually means we have a clear path to “fixing” things, but I’m in a better place now mentally in regard to the process. Having doctors who care about figuring things out, and who want to work with you to improve things in any way, makes all the difference. Never let anyone tell you that depression and anxiety aren’t completely normal reactions to all that you’re going through, regardless of whether or not you have a history with them.

    *hugs* Hang in there, and never lose hope.

  2. Im so sorry rhiann. Its so hard. With my 1st stroke all signs were missed and when my neuro finaly worked out it was t.i.a it was a year for diagnosis. With my cancer 2 yrs of being told lady probs then it was another 6 mths again before i started treatment.

  3. Sorry to hear what you are going through. Unfortunately I know all to well what a lot of it feels like. I too have been dealing with possible neurological symptoms which have yet to be diagnosed. I am also seeing multiple doctors and am scared, frustrated, sad, determined, confused, and basically overwhelmed. If they can’t figure it our, keep looking. Get more opinions. Try different types of doctors. Don’t take “you’re crazy” as an answer. I was actually told by my previous doctor that it was all in my head, but my new doctor looks at it very differently. I am also trying the naturopathic route to see if the different perspective is helpful. I wish you the best of luck. Keep in touch, it is not easy to find people who understand what we are going through. Thank you for sharing your experiences and emotions on your blog. I have a big about self empowerment and social issues, but have recently begun a second one to share my experiences as well. It is not easy to find people in our immediate communities who are going through the same things we are. I how that blogs like ours can help people not feel alone – I know yours has helped me. Maybe we can find others and link them together to help form a community of understanding, support, an healing.

  4. Before I was diagnosed with POTS, I asked my husband a few times if he thought I was “making things up” or exaggerating symptoms. Each time, reassured me that he could tell something is physically wrong.
    I am so sorry to hear you are in that doubtful place right now. Remind yourself that you’re not gaining anything by developing your symptoms. People who imagine or create symptoms typically seek out a secondary gain. Those of us who have neurological symptoms know that they come with overwhelming difficulties.
    I hope that you are able to get some helpful answers soon.

    • Thank you so much for your lovely message of support. I’ve been in the same position – I have asked those closest to me if they think I am faking my symptoms or exaggerating them, but like you my loved ones spend so much time with me that they are very real, and have a huge impact on my life. Thanks again for the support, it means so much xxx

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