Saw the new Neurologist...
Hello everyone,
Sorry for my absence of late, I've been in a very bad state of health. A "lot" of pain.
Yesterday I went in and saw the new neurologist I've been so looking forward to seeing. I was disappointed. He was not one that specialises in MS and his diagnostic skills leave a lot to be desired.
He ignored the list of symptoms I wrote up for him. He shone a light in my eyes to check the nerve for damage with his torch(?) He used the little rubber hammer to check my limb reflexes and did nothing else - just those two things.
Then he sat me up and said - Kerry you most definitely do NOT have MS.
He then told me that he would write a letter to my respective doctors telling them that - including the Neurosurgeon who referred me to him when I'd gone to that Dr looking for surgical help in fixing my TN. He was the one who said possible MS. So the neurologist is writing to him after such limited tests as testing reflexes only and telling him I'm good to go ahead for MVD (Microvascular Decompression) surgery... I would never agree to the surgery unless they can definitely disprove MS as a theory! Surgery for TN if someone has MS - actually makes the TN "WORSE"!!! So why would I do that!
I don't know - somehow I had "thought" that there was more than just testing reflexes in someone to confirming / dismissing a diagnosis. So, as for me - I am no better off in learning a thing. What is disappointing is that Neuro has a good reputation.
He said to me you do have bilateral TN (ah - doh! seriously like I didn't know that already) and that maybe I should start taking the tegretol again with the Gabapentin to try for more relief.. Relief huh? That'd be nice. I've been to the ER four times in the last 36 hours. So relief would be welcome.
I have slept for 7 hours, that was nice and only thanks to the Serepax I'm taking - but I woke in a lot of pain and woke exhausted. I barely have the energy right now to just type in this blog window.. I also learnt at the ER last night that the raw nervy pain I'd been getting down my neck and upper torso is called Allodynia and is an indication that the neuronal damage is now advanced... Great... Also that the neurons indicated for damage when the Allodynia is caused by TN are often located in the spine.
These specialist doctors do not seem to care about me and so that and with all of todays pain & exhaustion, I now feel very sad.
If anyone knows an actual MS specialist in the region of or surrounding the Gold Coast - please write me at "zoneofk@bigpond.com" I need some good Dr to do proper testing, to take all of what I've gone through into consideration. Someone who listens to what you tell them as well is nice, but i know that's a lot to ask of a specialist.
Thanks for listening. I had to get that off my chest so to speak. Not having a good week 
(
Cheers All ~ Kerry xx
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Please Note: Any advice given on OzMS must not be taken as medical advice, it's merely advice given by members from their own experiences of living with Multiple Sclerosis. Always check with your GP or Neurologist or other medical professionals, it's the smart thing to do and only logical! If you have something to contribute please do so, everybody has something to offer.
Comments
What a disapointment
Sorry that the neuro visit didnt answer your questions. Yes there are more tests that he should have done as well as listen to your symptoms & concerns.
One thing every neuro has done with me is the "push me, pull me" where they make you push with your arm/hand/foot & pull so checking strength in all limbs as well as how high you can lift etc.
That is just a basic, there are lots of other tests depending on the symptoms you have that can be run.
I can understand you wanting more testing done before surgery too.
I would definately ask for a referral to a major hospital that has a ms clinic with reputable neuros that specialise in it. I am sure there are some on here who will be able to help you out. If you dont get the response on here maybe put it as a question on forum for good neuro in that area. Cant hurt to ask.
Take care of yourself & do get another opinion, even if it means going through the er at a hospital that has ms neuro specialists.
Hugs,
Breathing in, breathing out, I return to my own blessed center.
I am ready to receive miracles!
My Neuro
Hi Kerry,
The details of my Neuro.
She's at Greenslopes, but she's really nice and calls "a Spade a Spade".
Her webpage is Neurology Choice so you can google that. The MS Society flag is on the website. Dr Melinda Pascoe.
Hope that helps.
I fly down from Gladstone to see her as we have virtually nothing up here (a Neuro goes to Rocky once a month I think and has a huge waiting list).
Cheers
Lisa
Rock, Paper, Scissors, Lizard, Spock
Possible contact
Hello Kerry,
My suggestion is that you contact the following professor. Professor Simon Broadley. He is the Dean of Medicine at Griffith University and he is doing current genetic studies in MS. He is also a Staff Specialist in Neurology at the Gold Coast Hospital. Excellent credentials. I don't know if he has a clinic but I know that he is connected with the hospital. Even if he can't treat you as I think that he is enormously busy, he might be able to advise of someone who is worth seeing. See the following website for info about him:
http://www.conference.co.nz/index.cfm/Anzan2009/Speakers/Invited_Speakers
His phone number at Griffith is (07) 5678 0702 and his email is simon.broadley@griffith.edu.au.
Call him now before the semester starts (beginning of March) as he will probably be uncontactable after that.
Cheers,
Jodi.
"Don’t judge each day by the harvest you reap, but by the seeds you plant" Robert Louis Stevenson.
Good reputation?.........ha ha
Sounds to me that he isnt as experianced as was predicted hey?
From what us members on here have experianced,its a long and annoying process for dx and to think he could wipe off the issues you have had with just testing reflex and looking at your eyes is to me quite unprofessional!
From what the others have suggested Im sure you will find the right Quack to help you out.
All the best with it!
Reeceo
"That there is Cundalini......
and Cundalini.....wants his hand back!"
(The Toecutter)
in limbo
What a dreadful place to be, in limbo between symptoms, specialists? and a diagnosis. It took me 2 1/2 years to get dx'd. Hope you find a competant Neuro, hang in there. Blessings Steve
"...(I) will run and not be weary, walk and not be faint." Isaiah 40:28
Hi
Hi Kerrie
Sometimes I think the neurologists think - if you can walk you are okay.
Last time I visited the neurologist he said he thought I'd had MS for 20 years. I think his attitude is 'you are very lucky', and at the moment I am. Yes, I still have issues and pain is one of them...and sometimes my life is a bit of a misery - and I do have disability because I can't do whatever I like anymore. But you wouldn't be able to tell from looking at me. I look completely 'normal' whatever that is.
Look, maybe I'm sounding a bit too upbeat about this... Even if you do have MS, the neurologist doesn't think it is that serious at present. I'm over looking for assistance from Doctors - it isn't their thing, lets face it.
Please don't get despondent about it.
Julie
Heartfelt thank you!
My dear new friends,
I want to thank you so very much for you are all so warm and encouraging and with great advice. i am feeling guilty and apologetic for the way I wrote the other day. I have been upset. The trigeminal neuralgia I get has been on a 3 1/2 week long rampage down the right side of my head in the good company of the occipital neuralgia as well. The only sleep I got was by attending my local A&E room at the country hospital here - where they'd inject me with the anti-inflammatory Toradol (Ketorolac IM INJ), plus give me a 5mg Diazepam & 2 panadeine forte tablets. Then i might get 2 - 4 hours of sleep. They let me sleep in an ante-room off their ER.
The lack of sleep and the constant pain well over a 10 out of 10 all day every day was driving me over the wall. I was losing it. I have insomnia caused by the pain - that persists now even without the pain. The pain and the meds i take have ruined my short-term memory seemingly beyond repair. Now I'm being reminded of things that happened or that i spoke of that days later, i still cannot recollect ever knowing ....
In the last 2 weeks the pain was worst - I'd have some days 2 or 3 trips to the emergency room. So in two weeks I've wracked up 30+ trips in all for treatment. No resolution achieved, but on one trip was to Gold Coast hospital as I had been visiting my Mum as I was in need of company - and that ER doctor prescribed me the Toradol + 4ml morphine - wipeout - couldn't sleep, but was "seasick" - YUCK. But she did send me away with a prescription for a new anti-inflammatory tablet i'd not tried before, it's not in my list and my Mum says i've never had it, lol. It's called "Diclofenac Sodium Tabs" - so now I take 1 of those 3 times a day. I have also bought some Capsaicin cream called "Zostrix" that seems to help.
Whether it's just a reprieve or not - the right side of my face is now 2 days pain free!! YAY!! I also have slept well the past 2 nights, though woken wobbly and weak with tremors - i can only figure it's due to the full sleep i'm getting as my body is no longer used to it. First night = 10 hours sleep. Last night = 9 hours!! WOW!! Oh, one can never appreciate the value of sleep till you don't have it right?
Well, my 2 day holiday is up - i can tell. The occipital neuralgia is starting up first - and began on the back left of my head, now moving to INCLUDE the right - so both sides at once.
I am just sick and tired of hearing my doctors say there's nothing they can do to help, i've been hearing that now for years and it's not good enough.
One positive if it turns out to be so is that I'm getting a treatment for the neuralgia by my pain doc this monday - called Pulsed Radiofrequency lesioning. Keep your fingers crossed for me that it is helpful??
Thank you all again for your great and sound advice and i hope you are all doing well!
Cheers ~ Kerry xx
Contact
Dr. Simon Broadley is in attendance at the Gold Coast Hospital most Wednesdays. He is usually booked out for a long time but the wait is worth it. He is to the point and direct, but also understanding and very knowledgeable. Contact Andrea Todd to make an appointment.