View Full Version : Things are getting worse and now I feel my GP isnt on my side

07-14-2011, 03:23 PM
What ever has been happening to me recently, is getting worse constantly.

Now, every muscle in my body is stiff and weak. You know if you flex your muscle and just hold it there and no matter what dont un-flex... you know that feeling? All my muscles feel like they are flexed. I can barely lift the kettle. My GP has no idea, but i think she has given up on me.
My writing is getting worse, I keep leaving 'i' and 'a' out of words : / whether I am typing or hand writing. I am extremely tired all the time.
The muscle flex thing is true for every muscle you can imagine... even my tongue and my throat. The more I talk, the worse it becomes and i eventually lose my voice. I have been taking a lot more liquid into my lungs than usual as well and I am exhausted half way through a muesli bar, just from chewing. I need to use water to swallow things like dryish food even then I get the occasional bit down the wrong way. I cant click things with my mouse anymore, i cant play my computer games because of it : (
My gait has become ridiculous. Its like I am drunk, but because my muscles are some what stiff I have this odd stiff kind of drunk action. Its hard to describe. Walking feels like I am falling forward to the right. I walk like an old person : (

My GP called the Neuro to see if they could get me in sooner, but they couldnt : ( She is sending me to an occupational therapist/physiotherapist to see if we can improve on any of these symptoms.

I would give my right arm to know what this is, but I would give everything to have it gone.

07-14-2011, 03:47 PM
Hi Giggle,

Christ mate i do really feel sorry for you, it's like alots happening in such a short time...i mean i get stiff muscles besides spasms as you know and that hurts alot but with it messing with your speech/ wrighting etc. Lets hope your doctor can sort something quick to give you some relief.

I've added a link below looked up your symptoms, wheather the info helps or not i thought you may like to read it just incase.


((Large hugs your way mate and thinking of you dearly)) Terry xxxx

07-14-2011, 07:03 PM
Giggle - have you been evaluated for MS by any chance?

07-14-2011, 07:29 PM
i have an aunty, who was adopted, so no blood ties.
she is a very good nurse.
she has lupus also.
when she was at her worse,
she could not even raise an arm.
she was bed ridden.

today she still works part time, running the emergency unit, at a major hospital.

it is hard as it is happenning.
your lupus is out of control.
please speak to someone, (maybe your physc)

do not spend money on doctors who will not listen..............
she does not understand your issues...
therefore she cannot help to heal them.

07-15-2011, 12:49 AM
I had an MRI scan of my head and it was clear. : ( which is great, but not at the same time, it means a long wait for a diagnosis.

Terri, thank you : ( may I ask why you get the muscle problems? I would even like a hint of what it might be, because it is one of those things you cant soldier through.

Steve, I wish I could. The worst thing is SHE IS THE BEST HERE! My old doctor LAUGHED at me when i said I had tremors. I cant wait to be in brisbane.
I talked to my psych : ) She is literally the only person that is interested in hearing it.

One of these days i wont go back and edit what I write so you can see how insane i have become lol

07-15-2011, 02:06 AM
Giggle you sound like me, I have the same symptoms. You just have to wait and see the Neuro. And even then you won't get a definitive answer. The symptoms you've described sound like Parkinsons. Please check the parkinson's web site for their list. My neuro wavers with yes and no. Doctors are afraid to commit to diagnosis's anymore because of malpractice. So we have to live with uncertainty.


07-15-2011, 07:35 AM
Good to hear that MRI is clear Giggle. Best of luck going forward. The wait time is just ridiculous.

07-15-2011, 01:18 PM
I am so sorry you are having to go through. Having to keep getting sicker and sicker and no one can tell you why is the most frustrating thing in the world. Just keep holding out and stand up for yourself and you WILL find answers. Until then we will all be here for you

07-15-2011, 04:53 PM
The muscles in my legs are like your muscles. My calf muscles are constantly tight (spastic) and the muscles in my thighs are tightening and spasming a lot.
I've been to lots of docs about it. They have ruled out MS, Parkinson's, Spinocerebellar Ataxia, etc. I also have Spasmodic Dysphonia. Recently, the otolaryngologist
who treats me for that told me that the tremors in my vocal cords are getting worse, and that he thinks that the spasticity in my legs is also a form of dystonia.
He suggested that I should be checked for spastic paraplegia. I don't know if the docs in Houston ruled that one out or not, so here we go again.
Terry and I both have Sjogren's, and I've met other people with it who have painful muscles too, so I don't know if we have any of those exotic neurological diseases, or if we are just having the neurological effects of our AI diseases. I just wish that our docs knew!
Let us know what you find out!

07-15-2011, 04:58 PM
thanks guys : )

Nonna, I looked at the parkinson's symptoms and more than anything else I have been able to find, they fit. But to be honest I have been looking for a way out of that one, because even treatment for parkinsons causes more movement issues just in a different way lol and painful dystonia?
I found something that said if there is a head tremor, then it isnt parkinsons. I do have a head tremor. But then I pondered that, because michael j fox has a head tremor... how accurate could it be to say that people with parkinson's dont get head tremor when one of the biggest poster boys for parkinsons has head tremor? I think even Muhammad Ali has head tremor. The other reason I wonder if it might not be parkinsons is that I get muscle twinges/jerks on my right side. Its like restless legs all over my body. What ever it is, its concentrated on my right side.

Anyway, Im trying to keep a blank slate but prepare myself for the worst. I feel like I just want the Neuro to know straight away. I am really nervous to be honest, because I have to go by myself and none of my symptoms are obvious.

I feel bad because I am whinging about it taking so long for a diagnosis... when you guys have already been through a long wait for diagnosis... and I was originally one of the 'luckyones' that only had very mild lupus until one fateful day when I almost died... and then I got a diagnosis within a couple of months! Before then I had no idea I had something called lupus.

Now I am making up for it, I know something is terribly wrong and needs urgent attention... but I have to wait. So far I have been waiting five months.

When I started writing this post, I thought "Yippee this is easy, it must be a good day, I dont even have tremor" but by the end of the post I was changing letters around in my words again, leaving things out, typing slowly, muscles are tightening and tremor is starting. Ah well, I almost felt right : )

07-16-2011, 03:06 AM
Giggle...i am pleased your MRI came back clear which is a really good thing mate.

My muscles became different after my strokes, then i was refered onto a rheumo who was a (MR) in his field did 20 miniture scans under an MRI
machine found out i had spondalitis and my spine disfigured from birth and while checking me, told me i had muscle wastage well i was shocked he measured my legs and confirmed it and i was only 24 at the time.
Sometimes when i walked before being diagnosed with Lupus my hubby used to say when you walk you look like someone p'ed up wobbling over the place besides my knees twisting in at times and when they diagnosed me and said i had sjogren's, which besides your eyes and dryness to the gullet causes muscle wastage paralization to the face which feels like you've had a stroke i soon mentioned this to the sister up the hospital because i thought OH MY GOD not another stroke and she said sjogren's paralises the face and works through the limbs and then the blood specialist said it was showing strong in my blood and as time goes on your skin tightens to the point where trying to smile will hurt.

Giggle... besides the sjogrens if it is that fully doing the muscles, when i had my strokes my gp came rushing into the home eyeing my mom and i told him anything to say, say it infront of me and he said we've got to pull Terry off the phenytoin which is for epilepsy as it's giving her muscle wastage...so over the years besides Doctor's having a good old mess around with my body i had this sjogren's and never knew it and as my muscles get worse, spasms hurt my legs like mad.

I still think there's furthur issues which have'nt been told me and it gets me mad at times.