azlemed 15/11/14
Last reply 3 years ago
limbo land since May 2013

hi, I had what has now been confirmed as a CIS in May last year, my MRI shows multiple t2 hyperintensites and I have headaches, tingling and numbness on my right side, I also have bladder issues, fatigue and insomnia. The neurologist sent me to a psych because he thinks it’s functional neurological stuff because I had some added anxiety while in hospital. The psych says no, just normal anxiety etc.

I saw a private neuro who thinks my diagnosis is somewhere between migraine and ms… So in the meantime I am waiting for another MRI to hopefully show some changes… It’s really hard to remain positive and not worry that each new thing that happens might be a flare or something else…


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3 years ago

You’re not the first person to be frustrated in “limboland”. MS is a notoriously hard condition to diagnose, as the symptoms can cover a multitude of conditions from a simple vitamin deficiency upwards.

A diagnosis of Clinically Isolated Syndrome (CIS) can be a precursor to a formal diagnosis of MS. If there was a condition called Singular Sclerosis, then that might have been used as you don’t seem to fulfil the “Multiple” bit of MS!

For the time being, you are going to have to bear with the medical professionals. However, you can start to look after yourself. Yes, it’s a trying time for you, but you must try not to make it worse. So, try and stop yourself worrying/stressing about what’s going on. These negative emotions contribute nothing positive for you. In fact, they can actually release chemicals in the brain which may make your medical condition worse.

So, in the meantime, be nice to yourself. Allow your body and brain to relax a bit and give yourself a break. “Whatever will be, will be” is the expression, but you can manage yourself to slowdown, or halt, the progress of whatever’s going on with you.

3 years ago

Thanks, I have started going to the gym, and taking multi vitamins and vitamin D. My main frustration is with the neurologist at the hospital who will not listen to me about anything and I have asked to change but cannot.

My original event was an extreme headache that had weakness of my right side and I had to use a walking stick etc. I also had some tremor in my right hand. It came on very suddenly and a lot of it has lingered since.

3 years ago

@azlemed , it’s not easy for the medical profession. We’re a fairly complex jigsaw puzzle and the Doctors haven’t got all the pieces they need.

It’s understandable that they’re reluctant to “take a guess”.

Hang in there…..

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