Author Topic: Bizarre symptoms  (Read 22315 times)

Offline Christina

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Bizarre symptoms
« on: Feb 28 2008, 03:47 PM »
Hi everyone

I've been having some really bizarre neurological symptoms over the last week.  Firstly I developed a sharp, stabbing pain
on the right frontside of my neck and it was extremely sensitive to touch.  I truly thought I was going to develop shingles.  Then last Thursday I started to get numbness in both feet, which over a couple of days spread to knee level and also numbness has developed in my sacral area, there is no pain, just loss of sensation. Several doctors' appts later and I'm being referred for an urgent neuro appt, lots of blood tests and a back xray.

Being an ex neuro nurse, I immediately thought Guillain Barre (a illness where the body attacks itself following a virus).  Today, just a couple of large spots have appeared at chest level just below my collar bone which I think could be a shingles rash.  GP says watch & wait to see if anymore appear.  I'm much more worried about the loss of feeling in feet & legs. 

I'll keep you posted on how things progress.

Chris
not waiting for the storm to pass, but learning to dance in the rain ...

pink

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Re: Bizarre symptoms
« Reply #1 on: Feb 28 2008, 04:28 PM »
Hi christina
           I suffer with reocurring shingles and have done since I was in my twenty's  I have had it twice in 2007 and I am always developing coldsores it sounds like shingles it can make you feel very low afterwards the GP should have given you( zolvarax tablets not sure on the spelling) if they suspected it which can help with the pain and tingling sensation normally my ear hurts behind when I am going to get a coldsore infection I have  even had shingles inside my eye which was very painful so I can sympathise with you but. Once the spots come out they normally clear but you get pain which the tabs help with. If you want anymore information you can email me. keep as well as you can.
Pink

pink

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Re: Bizarre symptoms
« Reply #2 on: Feb 28 2008, 04:30 PM »
Sorry forgot to say shingles travels down a nerve which could be why you have pain in legs I suffered really badly with my legs.
Pink

Offline Christina

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Re: Bizarre symptoms
« Reply #3 on: Feb 28 2008, 04:34 PM »
Hi Pink,  thanks for your thoughts.  I've also been wondering if this leg & foot numbness is anything to do with shingles but I've never heard of that happening before & can't find any info on the net on it either.  The only thing I can think is that the numbness may be caused by the shingles virus activating my immune system to attack itself.

Any thoughts anyone?

Chris
not waiting for the storm to pass, but learning to dance in the rain ...

pink

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Re: Bizarre symptoms
« Reply #4 on: Feb 28 2008, 05:56 PM »
What happens when you get shingles is  the virus always sits at the  bottom of the spine and travels up the spine and then it breaks out where ever it can attack so then the spots erupt and thats when you get the tingling feeling when they come out. When I had it I suffered with painful legs and tender sensations on the nerves. I got intouch with the SPHERE ORG they are great I will try and find there number for your it wont tell you about this as it only gives you the basics.

pink

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Re: Bizarre symptoms
« Reply #5 on: Feb 28 2008, 06:04 PM »
Sorry forgot to say  I had shingles over my right eye going through my head and then I had it on my left cheek but I always have numbness and tenderness. After having shingles all my problems started such as Polycystic ovaries and an underactive thyroid and then menieres and chronic fatigue too so shingles has a lot to answer for. But it dosnt always affect everyone the same hope inf helps and I will try and get that number for you. speak soon
Pink

Offline Christina

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Re: Bizarre symptoms
« Reply #6 on: Feb 28 2008, 08:01 PM »
I would be grateful for that Pink, thank you.

Chris
not waiting for the storm to pass, but learning to dance in the rain ...

pink

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Re: Bizarre symptoms
« Reply #7 on: Mar 04 2008, 08:44 PM »
Did you find out whether you had shingles I am sorry I havnt sorted that number I am having a really hard time at the moment I promise I wil find it.
take care Pink

Offline Christina

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Re: Bizarre symptoms
« Reply #8 on: Mar 04 2008, 09:46 PM »
No worries Pink.  Actually I'm being admitted to hospital for neuro tests tomorrow so I'll be quiet for a few days. 

Behave yourselves without me!

Chris
not waiting for the storm to pass, but learning to dance in the rain ...

barbara

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Re: Bizarre symptoms
« Reply #9 on: Mar 04 2008, 10:27 PM »
Hi Christina,
Sorry to hear you are going in but if it helps get to the bottom of everything.
Take care and we will be thinking of you.
Hurry back
Barbara

Offline jon

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Re: Bizarre symptoms
« Reply #10 on: Mar 04 2008, 11:04 PM »
Hi Chris,

Hope all goes OK with the tests and you get some answers soon,

Will be thinking of you,

Jon
Tinnitus and deafness left ear 1981 onwards.
Diagnosed with meniere's in 1993.
Retired from work 1995.
HNPP - Hereditary Neuropathy with Pressure Palsy

Lizzie

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Re: Bizarre symptoms
« Reply #11 on: Mar 04 2008, 11:16 PM »
Hi Christina

Good luck tomorrow.  I hope everything goes well for you.

Take care
Liz

NEWOSA65

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Re: Bizarre symptoms
« Reply #12 on: Mar 04 2008, 11:46 PM »
Best wishes Chris, i'm sure everything will be fine.   Simon x



Offline Dave T

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Re: Bizarre symptoms
« Reply #13 on: Mar 05 2008, 09:27 AM »
Good luck Chris - I am sure everything will be OK.
You will be missed.

Dave

constanlydizzy

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Re: Bizarre symptoms
« Reply #14 on: Mar 05 2008, 09:54 AM »
Hi Chris

Hope all goes well, will be thinking of you.

Julie

ManiloonySally

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Re: Bizarre symptoms
« Reply #15 on: Mar 05 2008, 07:57 PM »
Hi Chris

I have only just seen this and think i have missed you now, i hope it all goes well and they can find what is wrong, thinking of you :)

Sally xx

Offline gloverclare

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Re: Bizarre symptoms
« Reply #16 on: Mar 06 2008, 11:35 AM »
good luck, hope it all works out ok for you, what a horrible thing to have to put up with on top of what you allready suffer with!! take care, Clare XX

Offline nickiking

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Re: Bizarre symptoms
« Reply #17 on: Mar 06 2008, 05:23 PM »
Hi Chris,

How did you get on at the hospital? hope things are going to be looking up for you.

Take care

Nicki x
Nicki

Offline Christina

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Re: Bizarre symptoms
« Reply #18 on: Mar 06 2008, 07:16 PM »
Hi Guys

Back home from hospital now but it's not great news.  I've found out I've got spinal demyelination causing my symptoms.  So I'm back to hosp next week for iv methylprednisolone which should dampen down some of the symptoms.  Then I just have to hope this is a one-off and not the start of MS.  Finger crossed eh?

Glad to be home though.

Chris
not waiting for the storm to pass, but learning to dance in the rain ...

NEWOSA65

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Re: Bizarre symptoms
« Reply #19 on: Mar 06 2008, 07:47 PM »
Hi Chris,

Sorry to hear about the test results - are there any other causes associated with spinal demyelination?  I'll keep my fingers crossed for you :)

Best wishes,

Simon x 



Offline Christina

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Re: Bizarre symptoms
« Reply #20 on: Mar 06 2008, 08:05 PM »
Yeh, there are but can be even worse than MS so I'm not even going there with my thinking at the moment.

Thanks for your message.

Chris
not waiting for the storm to pass, but learning to dance in the rain ...

Offline jon

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Re: Bizarre symptoms
« Reply #21 on: Mar 06 2008, 08:41 PM »
Hi Chris,

Yah heck... I'm sorry. Let's hope the steroids cop this inflammation/demyelination in the bud...

There's lots of research being done so hopefully they'll get to crux and find some way to help.

Keep your chin up...

Jon

Tinnitus and deafness left ear 1981 onwards.
Diagnosed with meniere's in 1993.
Retired from work 1995.
HNPP - Hereditary Neuropathy with Pressure Palsy

Lizzie

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Re: Bizarre symptoms
« Reply #22 on: Mar 06 2008, 08:52 PM »
Thinking about you Christina!

Liz x

Offline nickiking

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Re: Bizarre symptoms
« Reply #23 on: Mar 07 2008, 09:22 AM »
Crikey Chris will keep fingers crossed for you

nicki x
Nicki

Offline Christina

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Re: Bizarre symptoms
« Reply #24 on: Mar 07 2008, 10:28 AM »
Thanks everyone for your thoughts.  I'm trying to remain positive.
I asked the consultant if my previous years of dizziness and imbalance could
be linked to this, particularly if I've never developed hearing loss.  He said it's
possible but they can't say for sure, since my previous brain MRIs have been
normal.

I'll let you know how I get on with the steroids.

Chris
not waiting for the storm to pass, but learning to dance in the rain ...

Offline Dave T

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Re: Bizarre symptoms
« Reply #25 on: Mar 07 2008, 10:51 AM »
Going on holiday Chris but I will be thinking of you.

Dave

constanlydizzy

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Re: Bizarre symptoms
« Reply #26 on: Mar 07 2008, 02:48 PM »
All the best Chris, will be thinking of you.

Julie

Offline gloverclare

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Re: Bizarre symptoms
« Reply #27 on: Mar 07 2008, 04:01 PM »
thinking of you, hope they can help you get better, take care, Clare XX

Offline wootywoo

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Re: Bizarre symptoms
« Reply #28 on: Mar 08 2008, 11:07 AM »
Hi Chris, i've not been online for a while and have only just caught up with the posts, i'm so sorry to hear what you're going through, i just wanted to say try not to worry too much and send my best wishes to you, you give so much support to people on this site, you're a star.   Lisa xxx
             

Offline Christina

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Re: Bizarre symptoms
« Reply #29 on: Mar 08 2008, 02:09 PM »
Thanks everyone for such kind wishes.  I know you're all rooting for me.
In a way, this is kind of a relief - that now I can put some of the symptoms
I've had for many years in context. The MD diagnosis for me has always been
iffy & who knows, maybe the steroids will sort out the balance stuff too.

 If it is MS, I shan't be leaving the forum (if you're all still happy to have me)
since I've made so many good friends and had so much support
from you all over the years.

Chris xx

not waiting for the storm to pass, but learning to dance in the rain ...

barbara

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Re: Bizarre symptoms
« Reply #30 on: Mar 08 2008, 05:14 PM »
Hi Chris,
Whatever the out come please, please stay with us as we all value your imput.
Hope all goes well.
Barbara

NEWOSA65

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Re: Bizarre symptoms
« Reply #31 on: Mar 08 2008, 11:47 PM »
Hi Chris,

I'm glad to hear that you won't be leaving us because the forum wouldn't be the same without you :)

And best wishes with everything.

Simon x



Offline layla

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Re: Bizarre symptoms
« Reply #32 on: Mar 09 2008, 09:03 PM »
Hi Chris,
sorry to hear that you have to go into hospital i hope that they find out what is wrong and that  they sort things out for you a.s.a.p. Good luck and i hope you feel better soon.  Thinking of you.

sue
x
a smile a day keeps the grumpy's at bay.

constanlydizzy

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Re: Bizarre symptoms
« Reply #33 on: Mar 10 2008, 09:46 AM »
Hi Chris

Really hope this treatment sorts everything out for you.

I can only repeat what others have said about you, without you and the other regulars on here, this website would not be what it is today.I'm certainly pleased I found it and would miss you loads.

Bless you
Julie.

Offline Christina

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Re: Bizarre symptoms
« Reply #34 on: Mar 10 2008, 09:56 AM »
I'm off to hospital tomorrow, as a day case for methylprednisolone iv over 3 days.  Not sure what the side effects will be like - apparently metallic taste, euphoria (could do with a bit of that!!), sleeplessness are the most common.  As the steroids will be in my system for 3 months I must not come into contact with any childhood infectious illnesses I haven't had.  Shouldn't be a problem.  I shall be very interested to see what effect the steroids will have on my general balance and the dizzies. 

Plus it will be nice to feel my feet & legs again but I'm told it will take 2/3 weeks to take effect anyway.

Thanks for listening to all this everyone - I know it's not MD stuff but I know you won't mind.  I'll promise not to bore
you too much with the ins and outs of this new development for me.

Chris xx
not waiting for the storm to pass, but learning to dance in the rain ...

barbara

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Re: Bizarre symptoms
« Reply #35 on: Mar 10 2008, 10:23 AM »
Hi Chris,
It doesn't matter that this is not about MD, it is still of relevance to us. You have lived with symptoms of MD but no certain diagnosis and when I first started with dizzyness what were they looking at but MS.
Fingers crossed that the iv steroids help not only the numbness but also the vertigo.
Take care and hurry back we will miss you.
Barbara

Offline Christina

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Re: Bizarre symptoms
« Reply #36 on: Mar 11 2008, 05:35 PM »
Hi all

Just thought I'd let you know I'm back from my first day of iv methylpred.  It was strange how about halfway through the infusion, the metallic taste suddenly hit me in the mouth.  Plenty of chewing gum and mints I think.  I am due for second treatment tomorrow.

It's looking more & more like this is MS from what I can gather but it's possible I have both conditions - bummer eh?

Chris
not waiting for the storm to pass, but learning to dance in the rain ...

barbara

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Re: Bizarre symptoms
« Reply #37 on: Mar 11 2008, 06:01 PM »
Hi Chris,
Glad you have got the first treatment out of the way. It may help the MD as well. Time will tell. Hope you soon get the feeling back in your lower extremities (to put it politely :D)

Keep smiling
Barbara

NEWOSA65

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Re: Bizarre symptoms
« Reply #38 on: Mar 11 2008, 06:45 PM »
Hi Chris,

Best wishes with everything and things may not be as bad as you think.

Simon x



Offline jon

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Re: Bizarre symptoms
« Reply #39 on: Mar 11 2008, 09:05 PM »
Hi Chris,

Keeping my fingers crossed for you, hope this treatment is successful.

It could be both, but in my travels around the neuro forums I've come across many MS patients who experience dizziness and balance problems, and a few who have had a meniere's dx as well. Have you been in touch with the UK MS societies, I think there's a few orgs out there.

Jon
 
Tinnitus and deafness left ear 1981 onwards.
Diagnosed with meniere's in 1993.
Retired from work 1995.
HNPP - Hereditary Neuropathy with Pressure Palsy

Offline Christina

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Re: Bizarre symptoms
« Reply #40 on: Mar 13 2008, 04:01 PM »
Quick update - now finished my 3 day course of iv steroids and glad to get that cannula out of my arm! 
Several side effects along the way - metallic taste, muscle cramps, increased heart rate and sleeplessness. Some numb areas seem to be improving but feet & legs are still by far the worst.  Hopefully things will start to calm down soon and I see the neuro again at the end of March. 

Was hoping and still am, that the steroids might have a profound effect on my dizziness but that still seems to be lurking although in a less obvious way.  Will let you know how I get on.

Jon - thanks for your comments.  I did have a quick look round the MS Society website.  Looks very informative at first glance and I need time to assimilate everything it says.

Chris
not waiting for the storm to pass, but learning to dance in the rain ...

Offline Fiona

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Re: Bizarre symptoms
« Reply #41 on: Mar 13 2008, 05:48 PM »
Hello again Chris, it's a while since I last looked in so i read your thread from the beginning.  Very sorry to read of the new problems you have and hope this treatment will prove good for you. You are in for the long haul, 3 months, avoiding infections could be difficult but hope your stamina and a positive mental attitude will help you
    Sending my very best wishes to you and all the other names here
    The last time I looked at one of my posts here i still feel a little embarrased by the Status beside my name and wondered if i should ask for that to be rectified as I find i am no longer posting as much as i did  and so dont deserve it :-[
    You are one of the easily remembered folk here and would be greatly missed for your encouraging posts .....and your smiling pic :)
   Best wishes ...Fiona

NEWOSA65

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Re: Bizarre symptoms
« Reply #42 on: Mar 13 2008, 06:17 PM »
Well done Chris - i remember having one of those cannula's put in the back of my hand and they left it in for 3 days... the pain was awful when i moved and i was glad to see the back of it, too!!!  Good luck.  Simon x

Offline gloverclare

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Re: Bizarre symptoms
« Reply #43 on: Mar 13 2008, 07:27 PM »
hope you feel better soon, take care, Clare XX

Offline Christina

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Re: Bizarre symptoms
« Reply #44 on: Mar 13 2008, 07:37 PM »
Hi Fiona

Nice to hear from you again.  Yes, it's all been a bit of a shock - the last thing I thought really.  Anyway, hopefully I won't be too badly affected and these steroids will sort out this episode. 
You are still a trusted member by virtue of the posts you've made in the past, so don't worry about your current status.  It's nice to have you back from time to time anyway.

Chris x
not waiting for the storm to pass, but learning to dance in the rain ...

ManiloonySally

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Re: Bizarre symptoms
« Reply #45 on: Mar 15 2008, 06:07 PM »
Hi Chris

I am really sorry you are having to go through all of this, and just wondered how you were feeling.  You always seem so positive and have always kept me going, so just wanted to say, i hope you are ok, and i am thinking of you :)

Sally x

Offline Christina

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Re: Bizarre symptoms
« Reply #46 on: Mar 15 2008, 06:20 PM »
Hi Sally

Thanks for thinking of me.  The steroid treatment has made me 'wired' yesterday & today, so Idon't feel at all like myself.  It's like I can't relax eventhough I feel quite tired, so I'm keeping busy doing jobs but I can't concentrate for long on anything.  The numbness is already beginning to resolve and over the next few weeks full feeling should return fingers crossed.  I'm back to see the neuro on 31 March so I shall be filling him in on bizarre symptoms that have happened over the years not to mention the dizziness. I hope things are going Ok for you now Sally.

Chris x
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Lizzie

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Re: Bizarre symptoms
« Reply #47 on: Mar 15 2008, 07:11 PM »
Hi Christina

It sounds like you're really going through it at the moment.
I really hope you start feeling better soon.

Best wishes  :)
Liz

constanlydizzy

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Re: Bizarre symptoms
« Reply #48 on: Mar 20 2008, 10:47 AM »
Hi Chris

Hope things are continuing to improve.

Best wishes
Julie x

Offline Christina

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Re: Bizarre symptoms
« Reply #49 on: Mar 20 2008, 10:57 AM »
I must admit, I'm down today & tearful.  Probably another extreme of the steroids.  Am trying to keep positive but today it's hard.

Thanks for all your kind messages folks, they mean a lot.

Chris x
not waiting for the storm to pass, but learning to dance in the rain ...