Nervously waiting

[AvaQ]

Hi all,
I've been reading the forum over the last few weeks as I wait to see a neuro next week.

I was investigated for MS back in 2005/2006 when I had some neurological problems (crushing pain in my upper back which felt like there wasn't 'room' for my internal organs; left side weakness; had to sleep with a frame over my legs as the touch of sheets was agonising). All tests were negative. MRI showed hyperintensities in e subcortical white matter that the radiologist said were 'more than expected for age so MS cannot be ruled out' (although my neuro at the time did just that). I had 7-8 'foci', aged 33.

Since then I've been left with residual numbness in my left foot (can't wiggle my toes) and it seems to creep up my leg when I'm fatigued, so my leg tends to drag and I trip over things a lot. I've also had intermittent episodes of the crushing back pain, for which I take Valium, lay down and concentrate on classical music until I can pass out.

In late April I had a few days where I was unable to close or fully open my left hand, and also had some tremors and spasms in my left arm. I had a routine checkup with my doc and he referred me to see a neuro and to get an MRI. A few days after the referral I got out of bed and ended up on the floor when my legs just gave out (very surprising and bewildering). I then had 2-3 weeks of extreme leg weakness, and my legs gave out on another 2 occasions. The weird thig was, that when my legs collapsed or got really bad, I couldn't talk properly - I found myself stuttering, which improved as my legs,improved. They're still a bit weak, but the left one in particular has a constant 'humming' feel, and I am getting amlot of tiny muscle twitches all though the thigh.

The MRI was done a bit over a week ago and the technician gave me contrast as she saw some "white splotches". See the neuro next week. I'm a bit nervous after the nightmare I went through with specialists a few years ago (was tested for EVERYTHING) and saw everyone from neuro to opthomologist to gastro specialist (due to crushing pain) to rheumatologist. In the end I have a 'chronic pain' diagnosis - which was basically given to ensure I could get disability from the military as I was forced to cease work and they knew SOMETHING was wrong.

My plan at this stage is to ask questions based on the info I've picked up on this site. If the neuro won't diagnose anything I'm going to ask for a thoracic MRI on a 3T machine (my scans to date were 1.5T). I live in QLD Australia,,so will have to travel about 1000km to access a 3T machine, but I figure if I need to have it done, I'd rather have it done right. I might also need to find an MS specialist - I live in a regional area, and there aren't a lot of choices for neurologists.

Sorry for the very long post! I guess I'm just wondering if my symptoms seem like MS to all you 'experts'? And if any of your members live in Australia, can you recommend any good MS specialists? And I'm probably looking for a bit of reassurance too. :) The last 7 or 8 years I've been convinced I couldn't possibly have MS. It was a shock to have my legs go so suddenly. "OMG!", she says, "Maybe it's been MS all along!"

Thanks so much, Ava

[kwarendorf]

" as 'the idiot neuro' has left town"

I think I like your regular doctor :-)

As to just managing symptoms vs. finding the cause...If it is MS, untreated your symptoms will progress. If it is MS and you treat it, you may be able to halt the progression.

Kyle

[AvaQ]

Hi Shell,
Thanks for your post. The 'splotches' are just what the radiologist said to me when she came in to inject the contrast - I haven't seen the report as its been sent directly to the neuro. I've got my old MRI reports but I've torn the house apart looking for my scans and can't find them. I'm hoping I've just stored them somewhere really bizarre and that they'll turn up eventually. :)

Hi Kyle,
Back in 2006 there was only one neuro in my area, who was the one who dismissed me. I didn't know any better, and just left feeling incredibly frustrated and stupid. When my regular doc suggested seeing a neurologist last month I was a bit hesitant for that reason (didn't want to see the same guy). My doc has Parkinson's Disease and is very outspoken - he told me not to worry as 'the idiot neuro' has left town and there are now 2-3 new neuros. He's given me a referral to one that his other patients say is okay, but he's said if I don't like him he'll just send me somewhere else (love my doc!).

Thanks for the info re. 1.5T machines. I just think that unless my brain MRI screams 'typical MS', then they'll want to do a spine MRI, as my main symptoms are in my body. Part of me thinks that life would be much easier if I just go on managing the symptoms without all the stress of tests and specialists, but another part of me (and my partner!) thinks that having your legs collapse is pretty serious and I should get to the bottom of it.

Thanks again everyone - being able to talk about it is really helping my nerves as I wait to see the neuro.
Hope you all have a good day,
Ava

[kwarendorf]

Hi Ava-

I just want to add my name to the list of people diagnosed with 1.5T MRI's and who have never had optic neuritis :-)

Optic neuritis is very common among people with MS, but it is not a requirement for admission to the club :-) If your docs are saying other wise, you should find new docs.

Welcome to our group, if not yet officially to The Club.

Kyle

[sllowe]

Hi Ava,

A belated welcome to you! You sure do have everything lined up with all that I would have suggested - excellent plan!

Ensure your Cervical spine is in the order for imaging.. And, ask about "splotches" have never heard of this language on a rad report. And, this is why...

Since in the past, you had imaging and 7-8 foci was documented, they could have made a comparison between the old and new. Ask about this.
Also, can you get ahold of your reports? (by chance you do go to the specialist)

If it's any consolation, I was dx'd on a 1.5, as were many others. If MS is suspected, and written on the order for radiology next go around, then the imaging sequences to see more should be completed. I trust that it will.

Last but not least - no apologies for venting, and long post. It wasn't that long, and that's what we are here for! Looking forward to hearing how your appt. goes.

Thanks for joining us,
-Shell

[AvaQ]

Thanks for the post, Dennis. I've read about your experiences with the VA hospital and silently sympathised. I'm ex-military, so from my service am aware of how hard it can be to deal with doctors whom you don't get to choose. Australia isn't big enough to have a dedicated health service for veterans - basically I can see any civilian doctor or specialist I choose, and VA just pays for it.

I'm hoping that if this is MS then I can finally be diagnosed and start getting treatment. I didn't do a lot of reading about MS back when it was last suggested, and I didn't realise until I looked on here a couple of weeks ago that they could treat it.

Thanks again for your support,
Ava

[AvaQ]

Hi JJ,
Thanks for sharing your thoughts. Yes, I'm aware of the link between MS and latitude. I grew up in the central highlands of NSW (Orange). I also have a family history of autoimmune disorders - my father and younger sister have rheumatoid arthritis (so that was checked pretty thoroughly back in 06) and my mother has Fibromyalgia.

I think I'm a bit stressed just because last time I saw a lot of specialists and they made me feel like a hypochondriac (trust me I'm not). But my concern at the time was that I knew I was going to be discharged from the Army, and without a diagnosis I wasn't going to be eligible for a pension (I was a single mother at the time, so going from a fantastic career - and income - as an Aviation Officer to social security scared me witless). So I did push for a diagnosis (anything!).

Since 2007, I've basically just 'managed the symptoms' but my legs going have made me realise I need to get further investigations. As I said, if I need an MRI of my thoracic spine I'm going to request it be done in Brisbane on a 3T machine. I've read Brisbane also has an MS Clinic, so if this neuro is as hopeless as the last one (a 10 minute consult and quick glance at the MRI) then I might ask for a referral. I generally travel to Sydney (I study through Macquarie University) 2 or 3 times a year, so I could also look there.

I guess my view at the moment is that whatever I am (or am not) diagnosed with, my body is going to keep on doing its thing - but it does scare me a bit if my legs are going to collapse on me like they were doing (this week seems a bit better, but I'm also making an effort to 'take it easy').

Thanks again for the post, and I'll let you know how it turns out!
Cheers, Ava

[supermum_ms]

Hi and welcome fellow Ozzie to our little MS community,

I'm not going to lie to you but you do have a few sx's that make you sound more suggestive of MS than not but because there are numerous MS mimics, it still may not turn out to be MS! You are probably living in one the states with the lowest statistic of MS, our overall country stats are a lot lower than a lot of other countries, 0.01% of the population and we only have approx 1000 dx each year.

Unfortunately, Australians are more often dx'd later, when the clinical signs of MS are more obvious or classic and the MRI evidence of lesions are clear. The colder states have the highest rates of MS and the 'assumption' is that neurologists in those states would have more MS patients, so be more familiar with MS and dx MS more often than others, plausibly true but not necessarily.

Its highly recommended for people to see an MS specialist, we dont actually have that many over here but most major hospitals should have at least one neuro specialising in MS. I would suggest googling the hospitals to find the names of neuros connected to MS, then look for anything they've written on MS, eg peer review etc and if possible look for reputation, seminars they've been to or speaking at etc etc. If i could provide you with a name i would but i'm in Vic and i've only talked to one other person from the top end and that was a few years ago, sorry.

Its always a good idea to take to your appointment, a brief list of sx's, your medical history, especially any prior MRI findings for comparison and evidence of dx conditions etc. Visual issues are very common in MS around 75%, sometimes people are not dx based on not having ON, there isn't actually any science to back that black and white theory up. Though there is a lot of research on visual, ON particularly which can be a stand alone dx but does have high stats of people dx with MS within 5 years, i'm not sure on Uveitis other than there being a possible connection.

Anyhooo, i've talked your ear off sorry, but i can count the number of Ozzie member on one hand and still have a few spare fingers lol Welcome!

Cheers.........JJ          

    

[Sailorsong]

There are many people with MS that have never had ON. We do have a couple of people here on the forum from your Australia including one of the co-leaders. I'm sure they could give you advice on MS doctors there.

From what you stated about your symptoms  it does sound possible that it could be MS or one of the many mimics. Usually a good MS neuro can figure out if it is MS or one of the mimics. But it can sometimes take many years to finally get a DX.

I do hope you find out what is going on.

Dennis

[AvaQ]

Oh! My other question was about Uveitis. One of the reasons they discounted MS back in 2006 was that I hadn't had Optic Neuritis. But I did have a bout of Uveitis in my left eye in 2003, and my medical records show I was complaining about blurred vision about the same time I got the crushing (read childbirth level pain) back pain.

In the last couple of weeks I've found peer-reviewed articles that suggest there IS a,relationship between Uveitis and MS, although its not as common as ON. Did any of you have Uveitis instead of ON?

Thanks again, Ava