[UpsyDaisy]

Regular Show -Thanks. I also hope I get complete answers soon. I am in VIC and have access to Emergency Respite which in hindsight I should have used at the time. It just never occured for me to do so. I am so sorry to read of your bad reaction. That must have been terrifing

IAmCal - It's a relief to get some answers. This team is really dedicated to finding out a cause, so that helps too. There also movement specialists, so not a general Neurologist, so this certainly helps heaps too. I am also sorry to read about your reaction too.

I went into Uni over a week ago to withdrawal from Nursing. The administrator said my marks were too good to just give up and talked to me about other options. I walked out having withdrawal from all my Nursing units, and enrolled in Bachelor of Health Sciences. I also gained almost a years credit. I started 2 weeks behind everyone else so am currently playing catch-up. It's also all off campus, so this works due to my changed circumstances too.

I have my next appointment with the Neuro team for early May. Will see what happens there. I am getting increased issues with my tremors - there much more obvious and very jerky. The medication I am already on does make more of a difference than I ever noticed before. It's so bad some morning I can't get the damn tablets out the blister pack from the jerking. It's also gone to other parts of my body now - milder but appears all over now. Not sure why though.

I am also having issues with the lower half of my body and movement. My legs, knees, hips hurt often (not bad pain, just there type pain) and I feel so stiff when I stand and it hurts to move when I walk.

In other news my SVT has played up on a few random occasions recently making me feel crap, but always short lived. HR is going straight up too 220bpm.

Anyhow, more to update them with obviously. I will see what happens and tell them about that stupid reaction to the medication.

Thanks

[Cat©]

Upsy, Im so glad you were able to change to a new degree! I know given your medical issues that even completing it may be an issue, but I just feel that it keeps that dream alive and gives you something other than the children.

I think you just need to keep your health in check, and if it becomes too hard to study then take a break or put in for a deferal, dont try to struggle through if you cant, make sure you ask for help.

Gosh I sound like your mother there! lol - sorry isnt supposed to sound like that, just that I worried you were going to have nothing besides the children, and studying keeps your brain active and makes you feel like you are achieving something big, well it did with me anyway. I used to feel proud just to get to uni each day, and any time I finished a unit it was high fives all round.

I never did finish in the end, but oh well, at least I did most of it! lol

Make sure you check back with the neuro if the movements are changing, the stiffness doesnt sound good.

Take care!

[UpsyDaisy]

Thanks for your kind words Cat. You're correct studying gives me something other than my kids and my own health to focus on. It does keep my brain active, so will definitely continue. So far, so good lol I managed to get a HD (95%) for my first assignment this year. That was such a shock but gave me something to look forward too knowing, at the moment, I can do this.

I'm not sure what to think of the movement changes, and stiffness. I don't get it. As they find me complex I sense it may fall into another mystery unexplainable issue. I see the movement clinic early May. I'll see what they think.

Thanks again for all the support. I do appreciate it. A lot.

Thanks

[UpsyDaisy]

*Head hits brick wall* multiple times update

Short version. I saw the movement clinic last week. I did indeed react to the medication. I had a full Neuro assessment, done a zillion times before, and the neurologist picked up numerous abnormalities. I asked if he knew the cause and he said not at this point. He did say he would give me a few different medications and see if they helped, and replace the medication I reacted too.

Now the *head banging on wall part* He consulted the head neuro who came is briefly. He told me I was stressed and anxious. No meds required. Given, they are yet to get any of my three years worth of medical records, and the fact he ignored the clinical findings of the other Neurologist did infuriate me a lot. So, I have gone right back to stress as the cause. The same finding as my previous Neurologist 3.5 years ago, but upon testing and getting to know my symptoms it was very quickly dismissed as the cause. I have reports proving all this.

I give up. Seriously LOL I see them at the end of the year and in the meantime suffer in many areas because I am just stressed. If I had a dollar every time I was told this I'd be rich haha

It does sadden me that subjective data, and easy assumptions are the clinical diagnosed opposed to objective data, and abnormalities in my Neurological assessment.

Been here. Done this many times before. This happens with each new specialist til they go "Oops".

What else can I do, really? I know they're wrong.

Sometimes I feel if I lie I'd get better treatment. Take this example. Which one screams stress as an assumption and which screams "possible medical causes"?

1. Married with 3 healthy children working as a successful executive on a three figure income? OR:
2. Single with 3 special needs children on a pension studying in the field of health?

Interesting exercise isn't it? Never assume!

This post has been edited by UpsyDaisy: 22/05/2013, 11:13 PM

[Cat©]

Oh no! Can you see a different neuro? Perhaps one who is refered by someone else there that's good?

I found during my travels that I was told my issue were all because I was fat (at 73kg!), Im fatter now lol.
I was told it was stress as I have 5 SN kids, so it must all be stress. Suuuuuuuuuuuuuure.

Some of them I really don't know how they managed to keep patients, they are shocking. Is there a female neuro? I have found females are much more understanding and tend to not rule you off so fast.