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giggle
04-09-2011, 04:59 AM
I have been having a head tremor recently along with being very unsteady on my feet for no reason. Its starting to scare me and Im wondering if others have experienced it.

I have also had some serious digestive inflammation.

Anyone got any ideas?

Linda From Australia
04-09-2011, 05:20 AM
What exactly is a head tremor?
I get quite unsteady on my feet as well, especially when I am at the shops and there is a crowd. It feels as though the other people are magnets and I get drawn to them. I have to work so hard to walk straight and not bump into people. Shopping is such a strain at times, it is so much easier when someone is with me so I can stick to them instead.

giggle
04-09-2011, 05:30 AM
yeah what is that! when I try really hard to avoid objects I end up walking into them instead. Its really distressing when its a crowd of people you are barging into! lol
I saw a lady on youtube with the same degree of head tremor as mine, I will link it :)

http://www.youtube.com/watch?v=I3jA2iyOF14

at the beginning you can see her head tremor. like me if she talks and moves her head around it will stop.

rob
04-09-2011, 06:39 AM
Hi Giggle,

I have what's called "Intention Tremor", and it's caused by my MS, not SLE. My hands shake when I go to reach for something, and the harder I try to reach accurately and not shake, the worse it gets. Typically my hand overshoots what I'm trying to pick up, usually knocking it over. I'm forever knocking over drinks. My neuro has tried a couple of different drugs to control it, but I haven't had much luck with either. It can be frustrating beyond belief.

Rob

tgal
04-09-2011, 07:14 AM
I have hand tremors bad! The harder I try to hold onto something that faster it falls to the ground. I reach down to pick it up and it just falls again. I have trouble typing for that same reason. I am also really unsteady on my feet.

I have that same problem Linda. That is why I can't go into any store and not hold a basket. It is almost like my security blanket

Nonna
04-09-2011, 04:38 PM
I have parkinsens; my head temor consists of a quick jerk to the right. I used to get a warning sensation, but not lately. I walk into things and need to hold on to the bugies like Tgal, sometime my feet stop working while I'm walking and I fall. Hands are always in temor so typing it hard. My mind and hand connections don't always work; I also get my mords all wixed up. Lol.

Hope this helps somewhat

nonna

giggle
04-09-2011, 10:36 PM
Thank you guys... every little bit of info or fellow experience helps that little bit more. Whether to point me in the right direction or rule something out.

Mine is the opposite of intention tremor I think. It stops if I move my head around or really concentrate on talking. If I watch TV or play a computer game for example, the tremor becomes worse. Especially during a computer game. I can intentionally stop my tremor by concentrating on keeping my neck still, but it hurts and causes a headache. If I lay down with tremor I get a really strange sensation, similar to that of restless legs at the base of my skull/neck. When I dont have a tremor, I often have jerking feelings and jerking movements which seem more severe, maybe only because they are sudden. My hands are also twitching but i have no tremor in them. I am weaker than ever, so much so my hand writing is affected. I am having even more trouble remembering and fitting a sentence together.

These are progressing really quickly by the way so I am very worried. I tried to write a shopping list today and I couldnt. I am meant to be going back to work on tuesday and my results come back tuesday afternoon but to be honest with how fast this is progressing and the rate with which the doctor is going about things I really think this is rather more urgent. I dont know what to do other than go take myself up to the hospital in hopes they might see to look into it with more speed... :/

Anyone else live more or less rural and have any suggestions?

steve.b
04-09-2011, 11:32 PM
i live rural 1.5 hours south of perth.
unfortunatelly over here the options are wait for the specialist to come to a close town, (1/2 hour way), or drive to perth.

i have had to give up work. can't concentrate properly or drive.

giggle
04-10-2011, 08:04 PM
Yeah steve we dont have specialists up here in Mackay. The specialist apparently flies up from Brisbane once every six months. :/ The other option is to get an appointment in Brisbane and fly down. Thats a very expensive route :( The drive to brisbane is 13 hours.

Im really anxious about my test results tomorrow.

steve.b
04-10-2011, 09:44 PM
there is a state governmet run transport scheme {Patient Assistance Transport Scheme (PATS)}.
this is subsidised federally, but managed at a state level. it will help with the cost of travel to a doctor.
it may have a different name in qld, but it does exist, as it is federally backed.

Peridot20_Gem
04-11-2011, 09:09 AM
Hi Giggle,

I used to suffer with tremors badly and it can be caused through the nervous system and i hope your able to get your results quick because the waiting game is so flustrating.

giggle
04-11-2011, 09:53 PM
oooo thank you I will look into that!! :) you've been a huge help

giggle
04-12-2011, 03:49 AM
so they got the results back and there was nothing abnormal... but the worst thing was when my partner asked the doctor about my head tremors he laughed at us, said it was behavioural and that I need to concentrate on not doing it. He said if its persists longer than two weeks then it is tourettes. We were very angry. Now I have no options for diagnosis... I need to the only other GP and get her to refer me to a rheumatologist in brisbane.


I am SO angry.

Nonna
04-12-2011, 04:04 AM
I think you need to also ask her for a referral to s neurologist. The more I read your posts the more you sound like me. It took a very long time for my neurologist to say I had parkinsens. But that weird feeling at the base of your skull is like my warning sign. It would not go away until I jerked. As to whether it's the same for you; you probably need a neuro to decide.

Hugs
nonna

giggle
04-12-2011, 05:12 AM
Something is definitely wrong. Im having to leave this doctor, I wont be going back to him. The lady doctor is nicer, although very slow as well. At least if I go to her I should be able to get something done. Parkinsens sounds scary to me, I have fingers crossed its not that, there is a whopping great part of me that just screams no its not parkinsens. Could it be a part of lupus?

rob
04-12-2011, 05:50 AM
so they got the results back and there was nothing abnormal... but the worst thing was when my partner asked the doctor about my head tremors he laughed at us, said it was behavioural and that I need to concentrate on not doing it. He said if its persists longer than two weeks then it is tourettes. We were very angry. Now I have no options for diagnosis... I need to the only other GP and get her to refer me to a rheumatologist in brisbane.


I am SO angry.

Hi Giggle,

People with Tourettes have Tics, not Tremors. Apparently this doctor doesn't know the difference. I agree with Nonna that you need to see a Neurologist for this. As far as this being caused by Lupus, it is possible. Lupus can indeed cause problems with the central nervous system. In fact, it's fairly common to have some sort of CNS involvement as a result of Lupus disease activity. I'm sorry you had this doctor laugh at you. What an a-hole.

Rob

tgal
04-12-2011, 06:55 AM
I agree with Nonna and Rob. I would ask for a referral to a new GP while you are at it and then give that one a new swift kick in the a%^!

Angel Oliver
04-12-2011, 10:17 AM
Yes i have them when i wake up.My mam used to make me a cup of tea and when i reached for it i spilt most of it.Now she doesnt bother since the doctor said its not lupus hahahahhaha apparently im well hahahaha.Hope you get it sorted,but i just leave mine as noone listens.xxxxx

giggle
04-12-2011, 08:54 PM
I went to the only other gp available today... and she was fantastic. it was VERY expensive $119 :( but this arvo I have a CT scan for my brain booked. She is also looking into my thyroid having some affect. She will call me this arvo about the results and i will be seeing her husband tomorrow (she is a new mum so will be off work). I am so happy... she is actually working hard to help me and she is furious at the other doctor... I have a history of blood clots and the doctor laughs at me when I present with neurological issues. I wont be going back to the other doc :/ But my wallet will be fully empty over this. sigh.

tgal
04-12-2011, 08:56 PM
How wonderful! Do you know that there is an autoimmune disease that causes clotting? Sounds like your other doctor didn't either! You go girl! I am so happy you fired the other one and found a good one!

Nonna
04-13-2011, 03:04 AM
Good for you. I know it's bad of me, but you are more important than your wallet. What good is money if you're too ill to enjoy. A lot of us also have hypothyroidism, the AI name is Hashimoto's Disease. Please keep us updated

hugs
nonna

giggle
04-14-2011, 03:30 AM
thank you nonna, I hadn't even heard of it before! It sounds about right!!

Peridot20_Gem
04-29-2011, 07:15 AM
I went to the only other gp available today... and she was fantastic. it was VERY expensive $119 :( but this arvo I have a CT scan for my brain booked. She is also looking into my thyroid having some affect. She will call me this arvo about the results and i will be seeing her husband tomorrow (she is a new mum so will be off work). I am so happy... she is actually working hard to help me and she is furious at the other doctor... I have a history of blood clots and the doctor laughs at me when I present with neurological issues. I wont be going back to the other doc :/ But my wallet will be fully empty over this. sigh.Hi Giggle,

I am pleased your getting better help with the new Doctor and i've never known thyroid cause the trouble but the CT scan should show what's going on if anything. I've had DVT in the past mate and been put on wulfrin not a pleasent experience at all, they checked my bloods last year and it showed no clots but they're keeping an eye on it.

By what everyone abroad as to pay in costs, you mays wel hand your purses over for safe keeping, the prices are terrible.