4 years 7 months and counting

[SSMednz]

So I have been lurking around here for a while trying to make sense of what’s going on with my stupid swiss cheese brain – Could be this? Could be that?  Yes yes I think I have that symptom aaarrgggg!!!
The information that appears here is of a very high standard in my opinion and I do value it.
It’s been over 4 years since an episode of bilateral shoulder weakness left me with some permanent nerve damage blah blah. Tinnitus is crappy. Tingling limbs are amusing. Paralysis is not amusing. Muscle cramps and spasms are annoying but OMG the hugs (usually 4-6 hrs long) are breath taking to say the least.
Sent to an Orthopaedic Doctor who ordered the MRI then shunted me off to Neuro once the white spots reared their ugly head – pardon the pun. He said “your neck is a mess and it looks like MS but at least it’s not a brain tumour”  followed by a slightly unsettling laugh
Had positive MRI showing 4 nice oval white spots and another larger spot (Neuro said it was a big one – great) also a “smear” in the cervical area. No evolution (stable MRI appearance) over six months after repeat MRI so he said wait and see if anything nasty happens – awesome.
It’s not good for anxiety levels or my high blood pressure going through life wondering if this is going to be the day that something nasty happens to me that could leave permanent damage or blindness in one eye…. It’s like a lucky dip into the pool of demyelination.
Ten days ago I developed left leg numbness which was later joined by numbness of the same side arm and face. I know what a person uneducated on MS might say – STROKE !!! GO TO THE E.R. MAN.
What made me think this was my old “suspected demyelination disorder” was the fact that this latest episode evolved over a day or so and not minutes as in the case of a stroke. Whole left leg was feeling numbish when I jumped out of bed and it hit the floor then followed the numb arm and face. I didn’t do anything for a few days to see if it would just go away. Males are particularly useless when it comes to going to a doctor but in New Zealand males are even more reluctant and tend to have a “Just harden up mate” or “she’ll be right” attitude.
My GP (PCP) was not available so it took a few days to get an appointment with another doctor who said demyelination was at the top of the list…. He rang the Neuro who has put me on the urgent list so I will have to wait a bit longer. God I hope I don’t have to go in the tube again. It’s not that bad but it does make me just a little nervous. I do like the cool sound effects though.
We have one neurologist in our area so undiagnosed patents are graded according to their urgency. My interpretation of our waiting list system is as follows
Acute – may be seen that day (probably not) or week depending if you’re walking and talking or not.
Urgent – hmm you’re not dying and can talk properly so could probably wait a few weeks.
Less urgent – well its only paralysis and stuff so we will put you on the 3 month or more list.
Even less urgent – Go back to your GP if anything else come up.
Even more less urgent – Harden up!!
Unfortunately it’s the same when you’re waiting for an MRI. To be seen the first time and to be spat out the other end with a wait and see dx took around a year for me – but hey it was all free. I do have some time to kill but not $1k per MRI so I will take what they give me if it means getting some answers - even if it takes a while.  4 years 7 months and counting.
Thank you for letting me rant.

[SSMednz]

Thank you for the warm welcome Laura.

The CIS thing here in NZ is the sticking point. I guess we lag a little behind and when the system is free there may be some $$ issues involved. I know that even with a dx of MS you have to have had a certain qty of flairs in a certain period of time....I know some of the treatments are very costly.

I will be seeing the same neurologist so at least he will have some good knowledge of my case history.

Thank you for the point about getting treatment for the sx regardless of a dx - priceless.
Scott

[SSMednz]

Thank you Alex. Your situation does put things into perspective for me. Wow you sure did go through the ringer on your road to diagnoses. Unfortunately we don't even have a local Neuro who is an MS specialist.

So - not only did you have to wait and see but you also had to pay for the privilege. I guess I can count myself lucky that our system is free.

Appreciate your frank openness
Scott

[Lulu54]

Welcome  out of the shadows and into the light where we can see you.  There are many here who share your journey - the frustration of 'wait and see' is so unnecessary.  The current accepted standard in the US and Canada is to treat people with Clinicially Isolated Syndrome (CIS) such as yours.  You have a first episode that looks and smells like MS, so it is ok to treat it to now to stop any further progression if possible.    Too bad that is not the standard yet in most of the rest of the world.

Will this be the same neuro who saw you the last time? Regardless of that, I would go prepared with a brief list of the symptoms and their chronology and hand it to the doctor.  the key word is brief.  Tell the neuro how this is affecting your quality of life.

  Then ask to be treated ... if not for mS at least for the symptoms you have.  You don't have to wait for the dx to control the other problems.

Good luck with the wait - I'm glad you are on the urgent list and not the acute one.
-Laura

[HVAC]

It can take awhile to see a MS doctor there are so few of them. My first appointment took 8 months. Now that I am diagnose I see my MS Specialist every 16 months to three years because he is so busy and has so many patients.

To be diagnosed it took two years 5MRIs, 4 Neurologist, an Evoked Potential test, tons of blood work to rule other conditions, and a Lumbar Puncture. I had six months between appointments to see if changes developed. My first MRI showed classic MS lesions called Dawson's Fingers. The Neurologists all said I would be diagnosed with MS some day but they would not diagnose me. I thought I was being dismissed. I have found this is typical.

I spent $10,000 out of pocket in 2009 for My MRIs, Evoked Potential, and Lumbar Puncture.

Alex