Hi again Jules,
Yes i read all of your story. May i suggest booking an appoinment with Dr Paul Sandstrom. I have been told he is the best. Don't know personally but i have booked an appointment for June or July that was the earliest i could get in. It won't hurt to book now as believe me the waiting list just gets longer. From what i can gather most people go through several Nuros and Drs before they get one that will at least listen and from all accounts he is the guru in QLD. Have you considered trying Melbourne Royal as they have the best Nuro in Aus for MS?
The Telemetry is a test where you are wired for sound so to speak and videoed to check for brain related activity. From what i can understand it is to rule in or out epilepsy as i have seisure like activity as part of my symptoms. The strange part is that i know exactly what is going on but cannot do anything about it other than wait until it passes eventually. The Nuro that i saw told me that there were only 2 types of seisures epileptic and psudo. From what i can gather a psudo seisure is caused from a psychological problem. So that is why i was refered to a shrink. From what i have read seisure activity is not uncommon amongst MS but for me it seems to be worse in stressful situations or when extremely fatigued. Believe me i even have them in my sleep at times.
Make sure you are keeping a diary of episodes/symptoms and how long they last. Have you had a remission period yet?
Thanks for listening and stay in touch.
Scotty
PLEASE HELP I IAM SO SCARED
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71jules
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Hi Scotty
Thanks for that, interesting. Believe me if this continue and I get no joy from Docs in Brissie we will look at going interstate, we were only in Melbourne two weeks ago, we are originally from there.
Remission don't think so as the symptoms have crept up and got worse over the last 3 years or so and it was when the symptoms turned to numbness, pins and needles, trouble walking, speaking and comprehending it was then the GP got concerned and us.
I have not had any seizures Scotty but plenty of other symtoms to worry me. If I was to read back on my posts I would prob end up in tears.
Too much Scotty to deal with.
As I write this I am in bed with what is normally the common cold but as usuall more like a virus, very weak and sick indeed.
Yeh feel a bit sorry myself lol.
I will get better soon though, so stay in touch and we will go through our tests as a team hey?
Here's hoping once again we get to the bottom of our problems.
Keep smilin
Jules
Thanks for that, interesting. Believe me if this continue and I get no joy from Docs in Brissie we will look at going interstate, we were only in Melbourne two weeks ago, we are originally from there.
Remission don't think so as the symptoms have crept up and got worse over the last 3 years or so and it was when the symptoms turned to numbness, pins and needles, trouble walking, speaking and comprehending it was then the GP got concerned and us.
I have not had any seizures Scotty but plenty of other symtoms to worry me. If I was to read back on my posts I would prob end up in tears.
Too much Scotty to deal with.
As I write this I am in bed with what is normally the common cold but as usuall more like a virus, very weak and sick indeed.
Yeh feel a bit sorry myself lol. I will get better soon though, so stay in touch and we will go through our tests as a team hey?Here's hoping once again we get to the bottom of our problems.
Keep smilin
Jules
Jules,
Have they ever had the audacity to tell you it is Psychological? That seems to be the brick wall that i keep hitting. I suppose for them that would be easier than dealing with a patient with MS. By the time all these DRs are finished telling me the tests are clear i will probably need a shrink. As for a remission have you ever even gone a few days or perhaps a week with nothing much to report?
Hope you feel better soon. Flue wise that is. I don't suppose the other can ever go away until you get diagnosed, and probably will still be there anyhow.
Scotty
Have they ever had the audacity to tell you it is Psychological? That seems to be the brick wall that i keep hitting. I suppose for them that would be easier than dealing with a patient with MS. By the time all these DRs are finished telling me the tests are clear i will probably need a shrink. As for a remission have you ever even gone a few days or perhaps a week with nothing much to report?
Hope you feel better soon. Flue wise that is. I don't suppose the other can ever go away until you get diagnosed, and probably will still be there anyhow.
Scotty
L,
13 years i cannot believe it. I presume that you did not present with any outward type of symptoms other than the fatigue which they would blame on anything. Did you have any obvious symptoms that they could physically see?
Do you think you actually had it for the 13 years, and it just took that long for the leisions to show?
I understand where you are coming from with the psych part as that seems to be where i am at, once they see schink on the chart you are labled for life. My first encounter was when i presented to the ED with my first turn and as they could not come up with anything in the bloods and X rays they asked if i would see a shrink. Well after being in hospital for 12 hrs or more thinking i had had a stroke i told them i don't care what you do just hurry up. So from then on i am sure they kept looking at that, and as i say tests clear, must be a psych problem.
I'll play the wait and see game but i swear that when i get to the bottom of all this i am going to the media as the attitude of most of these clowns that call themselves DRs is really statring to P... me off.
Thanks Scotty.
13 years i cannot believe it. I presume that you did not present with any outward type of symptoms other than the fatigue which they would blame on anything. Did you have any obvious symptoms that they could physically see?
Do you think you actually had it for the 13 years, and it just took that long for the leisions to show?
I understand where you are coming from with the psych part as that seems to be where i am at, once they see schink on the chart you are labled for life. My first encounter was when i presented to the ED with my first turn and as they could not come up with anything in the bloods and X rays they asked if i would see a shrink. Well after being in hospital for 12 hrs or more thinking i had had a stroke i told them i don't care what you do just hurry up. So from then on i am sure they kept looking at that, and as i say tests clear, must be a psych problem.
I'll play the wait and see game but i swear that when i get to the bottom of all this i am going to the media as the attitude of most of these clowns that call themselves DRs is really statring to P... me off.
Thanks Scotty.
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71jules
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Makes you angry hey? Doctor or pretend to be or Doctor with no bed side manner, we just want to be taken seriously and the sad thing is scotty if it was the doctors family member sitting there of course things would be different.
My Neuro knows there is something and he does believe poss MS but he has no bedside manner.
A previous Dr three years ago suggested a shrink for me even though the proof was in front of his face.
I now have a very good doctor for this other problem who is doing her best to help me, we are waiting on a biopsy to rule out vasuculitis.
I feel for you and anyone else who has been treated like that.
Sadly for me my mum commited suicide after suffering years and years of depression.
When the Dr found this out I think he thought I must have nothing better to do than go and have blood tests (needle phobic, hello!) and go for appointment after appointment.
Sad this happens but please don't give up there are good Doctors out there, we just need to find one and stick to them.
Keep smiling.
Jules
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chrishasms
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Hey Jules,
I started with headaches. Medication keeps then under control but that was my first symptom.
I had my 1st Tysabri Infusion to day and it went great. No problems at all.
Hugs to you so far away!!
CF
I started with headaches. Medication keeps then under control but that was my first symptom.
I had my 1st Tysabri Infusion to day and it went great. No problems at all.
Hugs to you so far away!!
CF
Holly - Shine On You Crazy Diamond - Pink Floyd
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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71jules
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Hi again
Well, the rubber like feeling in hands and now the weakness of my right arm in particular so bad I had to ask my husband to dry me this morning and to put hair product in my hair too.
This was rather upsetting to me, just seems these symptoms on top of every other one are getting worse and happening more frequent.
Thanks for letting me vent my emotions once again.
Jules
Well, the rubber like feeling in hands and now the weakness of my right arm in particular so bad I had to ask my husband to dry me this morning and to put hair product in my hair too.
This was rather upsetting to me, just seems these symptoms on top of every other one are getting worse and happening more frequent.
Thanks for letting me vent my emotions once again.
Jules
Hey Jules,
It did involve needles. It was an IV Infusion.
But the infusion nurse was great, she stuck me the first time and it did not even hurt. 
Of course I drank about a gallon of water on my drive to the site which takes me about 2 hours to get there. 
It helps with the needle stick if you are very hydrated.
I get the rubbery hands sometimes too and the electric shock sensation. Hang in there girl!! Hugs from across the ocean!!
CF
It did involve needles. It was an IV Infusion.
But the infusion nurse was great, she stuck me the first time and it did not even hurt. Of course I drank about a gallon of water on my drive to the site which takes me about 2 hours to get there. It helps with the needle stick if you are very hydrated.I get the rubbery hands sometimes too and the electric shock sensation. Hang in there girl!! Hugs from across the ocean!!
CF
Holly - Shine On You Crazy Diamond - Pink Floyd
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.