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Old 04-22-2011, 04:47 AM   #16
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darkling thrush HB User
Re: Worried I have MS

Hi Raj, how's your hangover? It's such a lovely, sunny day - a good walk might clear your head a bit.
I'm ok(ish). I woke up with a bit of a noisy head - which isn't the wine - I get it quite often; I feel a bit off-balance too and my feet feel like I'm walking through quicksand. I've also noticed for the second time that my lip, side of my nose and cheek feel a bit numb. Sorry to be a bit downbeat when it's such a nice day too.
I'm going to ring for an appointment with the doctor I told you about after the Easter holidays - trouble is she's one of the few good doctors at our surgery, so I'll probably have to wait about 3 weeks to see her - or if not, see another locum which I'd rather not.
I've just got the house to myself - my husband's gone to watch a cricket match (Durham), and the kids are all out with friends (bliss!), and as I've had a busy morning tidying up after them all, I think I'll do a bit of ironing, then put my feet up and watch a film or something - God, I've got an exciting life, haven't I? I'm not complaining, though - I wouldn't change my family, just my health issues!
Have a nice day and enjoy whatever you have planned - try to take your mind off things if you can!
Speak to you soon, Jan.

 
Old 04-26-2011, 10:09 AM   #17
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darkling thrush HB User
Re: Worried I have MS

Hi Raj,

did you have a nice Easter weekend? I hope you had a chance to relax a bit, and are feeling well.
Have you come to any decisions yet about going private? I hope you don't mind me asking, but how do you go about getting private treatment? Do you need a referral from your GP or do you contact the doctor/care provider direct? I honestlly don't know, as I've never needed to go private before.
I'm still considering one more stab with the NHS, but don't hold out much hope and am feeling a bit 'off' at the moment, and don't relish the idea of waiting 3 months to see a neurologist like last time anyway.
So many questions!! Please come back to me when you have time.
Take care, Jan.

 
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Old 04-26-2011, 12:48 PM   #18
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littlehutton HB Userlittlehutton HB Userlittlehutton HB User
Re: Worried I have MS

Quote:
Originally Posted by darkling thrush View Post
Hi Raj,

did you have a nice Easter weekend? I hope you had a chance to relax a bit, and are feeling well.
Have you come to any decisions yet about going private? I hope you don't mind me asking, but how do you go about getting private treatment? Do you need a referral from your GP or do you contact the doctor/care provider direct? I honestlly don't know, as I've never needed to go private before.
I'm still considering one more stab with the NHS, but don't hold out much hope and am feeling a bit 'off' at the moment, and don't relish the idea of waiting 3 months to see a neurologist like last time anyway.
So many questions!! Please come back to me when you have time.
Take care, Jan.
Hi Jan

Just to answer your question regarding seeing a private neurologist. You have to get a referral from your GP first, and if you have medical insurance, that should cover the cost, otherwise you will have to pay for the consultation initially. Though I believe that any tests recommended or treatment can then be referred back to your GP, so that you can have those done on the NHS. Although if you are sent for MRI's etc the wait could take some time, whereas privately they can normally be done very quickly. The consultation fees are not that bad, but the tests, especially scans can cost quite a lot of money, so might be worth getting those done on the NHS if you can wait long enough. Also wanted to mention that the private consultants are the same doctors that you would see on the NHS, the only difference is the waiting time. Hope that helps.

best wishes

 
Old 04-26-2011, 01:19 PM   #19
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darkling thrush HB User
Re: Worried I have MS

Littlehutton, hello and thanks for your reply. I don't have health insurance, but could afford the initial consultation I think. I suppose I'd then have the option of being referred back to the NHS if the consultant recommended further testing.
I'll go back to my GP and take it from there.
Thanks again for your help. Jan.

 
Old 04-26-2011, 01:29 PM   #20
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littlehutton HB Userlittlehutton HB Userlittlehutton HB User
Re: Worried I have MS

Hi Jan

you are more than welcome, I do hope that you manage to get to the bottom of your problems soon, I know how terrible it is not knowing what's wrong, but a neuro would definitely be a very good place to start, at least you can get the ball rolling, hang on in there!

Best of luck

Last edited by littlehutton; 04-26-2011 at 01:31 PM. Reason: typo

 
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Old 04-28-2011, 03:47 AM   #21
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raj1970 HB User
Re: Worried I have MS

Hi Jan,

Sorry for not being in touch, work has been incredibly busy.

I'm OK hangover wise but my symptoms are with me every day and seem to be getting worse!

I didn't get a referral from my GP when I went private but then I did go to a fully private hospital/clinic which I found on the internet.

I believe Littlehutton is right in that you need to get a referral from your GP (although I'm just about to challenge that theory!) to go private and the only difference is speed. The same doctors have an NHS shift and then they have their private work where you can get to see then quicker.

Littlehutton is also correct about the cost. The initial consutations will be in the hundreds of pounds category but any testing will be in the thousands of pounds.

Did you manage to have a nice Easter? I hope you are not feeling too poorly?

All the best

Raj

 
Old 04-28-2011, 10:40 AM   #22
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darkling thrush HB User
Re: Worried I have MS

Hi Raj,

don't worry about not coming back to me; it sounds like you are having a hectic time. I'm sorry your symptoms are getting worse - just hang on in there - I'm sure things will be resolved if you keep on at them!!
I'm sorry to say I am feeling pretty unwell at the moment. I'm feeling pretty down, but I've gone through things like this in the last 3 years and I've always come out the other side!!
I'm having my usual numb feelings (a bit worse than previously - they are lasting a bit too long for my liking), feeling really wiped out and on top of this the stiff face has turned into the toothache from hell. I tried to see my dentist, but all the dentists at the practice are off 'on the sick' believe it or not - I have an emergency out of hours number, which I'm seriously considering given that everything will be closed due to the Royal wedding!!!!!
I think, in the words of Bill Hicks, maybe God is a prankster having a bit of sport with us!! Sorry to sound like a heathen - don't have much of a sense of humour just now!
Anyway, enough about me, please keep me up to speed on what you decide to do. Look after yourself, Raj, and hopefully next time we speak I'll be more like my usual happy self.
Take care, Jan.

 
Old 04-29-2011, 01:02 AM   #23
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raj1970 HB User
Re: Worried I have MS

Hi Jan,

Sorry to hear you are having such a tough time - do try to hang in there.

After thinking about this a bit more, I'm pretty sure you don't need a referral from your GP to obtain a private appointment - that would defeat the object of going private! You just choose your hospital and say you'd like to see a neurologist and they will take you through the process.

I'm going to now get a 3rd opinion from the Institute of Neurology and Neuroscience in Queens Square, London. The doctors there are very good and I hope they either say yes it is or rule it all out!

Again, I really hope you feel better soon.

Take care

Raj

 
Old 04-30-2011, 02:26 AM   #24
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darkling thrush HB User
Re: Worried I have MS

Hi Raj,

Thanks for your message.

I've had a rough few days, but have woken up this morning and feel a bit better. I am totally dosed up with paracetamol and nurofen, though, so maybe they have a numbing effect (no pun intended).

I've looked into MS Specialists, and there are 3 based at the RVI in Newcastle, which is where I saw the last neurologist; I may take your advice and contact them just to see what they suggest regarding a referral, but have always got the option of the GP referral too.

Good luck with your quest to get another opinion. We may both find some resolution some day - it's the waiting, knowing something's not right and finding no answers that messes with your head the most - even more than the symptoms, I think.

Hope you have a nice weekend - please get in touch with any updates.

Take care, Jan.

 
Old 05-02-2011, 12:25 AM   #25
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Re: Worried I have MS

Listen to me!! I am from Guelph Ontario Canada (The exact place you visited) and I'm experiencing almost exactly the same symptoms as you!

The fact that I found this thread has to be some type of sign from God! I can't believe it! I was just browsing here wondering if I might have Multiple Sclerosis and maybe find a thread that relates to my own experience, and here I find another peson that has visited my home town is having the same perplexing mystery symptoms as me! what are the freaking odds!

Well I will tell you, I have the same severe pain and odd sensations that are just unexplained (bubbling and popping in the muscles of the feet anyone!) and did have a flu at the time of onset of symptoms. (Dont think this relates to you) but I had developed a mystery shingles-like rash (suddenly) that spread all over my body,covering from my stomach to my neck, that was diagnosed as Pityriasis lichenoides --which is basically an auto-immune response to something greater going on inside the body and is more than likely linked with exposure to the Epstein-Barr virus. This virus is notorious for being associated with a whole host of medical problems including M.S.

Now this pain I had was centered in my lower back, lumbar area, and was very sporadic like, came and went from time to time. I actually thought it was a kidney infection so I had my urine examined and it was indeed negative for such, so then I looked into Endometriosis, as it runs in my family, it is also known for causing debilitating back pain and odd sensations down the siatic neve-- so I thought what the hell! why not have an ultrasound and examination just to make sure, so I did and that too came back negative for any present disease.

But the worst came three nights ago when I was shot down with extreme back pain so severe I was certain my spine would shatter! this was nothing like the chronic back pain I had been experiencing over the last six months, this was a whole new level of awful! this was an attack of my immune system. I could barely get out of bed or even turn my neck, I was like locked inside a huge muscle contraction. This finally made me think of multiple sclerosis-- I got on google, did some research, and have found I have a lot of coinciding symptoms with an M.S diagnosis, and what I might be experiencing is perhaps an M.S attack (sudden flare).

The fact that you visited Guelph and took home similar symptoms deeply troubles me, this makes me wonder if there is some type of virus (Epstein-Barr or otherwise) or environmental poison existing in Guelph that got us sick.

Last edited by Beelucious; 05-02-2011 at 11:55 AM. Reason: to clarify

 
Old 05-02-2011, 02:21 AM   #26
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raj1970 HB User
Re: Worried I have MS

Hi Bee,

First off, I'm sorry to hear that you are suffering with horrid symptoms and secondly wow to hearing from someone from Guelph!

What are you doing at the moment to try and get a diagnosis and can you track the onset of your symptoms to any event or specific time? That would help the diagnosis ball rolling.

I was over in Guelph for a wedding and so visited lots of places, notably, St Jacobs, so I could have got something there. That place is even more rural than Guelph.

I hope there is no virus or environmental poisoning but the latter has crossed my mind to.

Take care

Raj

Last edited by moderator2; 05-02-2011 at 06:08 AM.

 
Old 05-02-2011, 09:06 AM   #27
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raj1970 HB User
Re: Worried I have MS

Hi Bee,

Can you send me a pm?

Take care

Raj

 
Old 05-02-2011, 10:32 AM   #28
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Re: Worried I have MS

Well the back pain and weird sensations started in November of 2010, followed by the Pityriasis rash. And seemed to take a sporadic course-- some days I honestly believed it was all in my head and others when the pain and tingling became more pronounced, I was convinced something more serious was definitely happening.


I know my Mom got really sick as well ( just in October), having some of the same symptoms as me.. but certainly not all. She had more of a burning sensation and debilitating pain than anything else...no numbness though. She tested positive for the Parvovirus b19 ( as well as I did years ago) which caused her to develop an onset of Polymyalgia Rheumatica, a form of Arthritis that attacks the muscles, she was put on Prednisone and now is doing a lot better. But still, no one is sure how long the disease will remain active in her system.

As for me, I think I better request an M.R.I to check for lesions followed by bloodwork.. I really hope they don't have to do a spinal tap. I'm considering contacting the center for disease control if anything does come up. There's actually been quite a few multiple sclerosis cases among my peers (In university), I know of two girls in particular who developed it onset.. but again, that could be totally a coincidence.

Please take care! don't know what else to say, I will keep digging and try to find out as much as I can. It's still a total fluke how I found your question! it must have been meant to be lol.

Last edited by Beelucious; 05-02-2011 at 05:10 PM.

 
Old 05-03-2011, 09:44 AM   #29
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Re: Worried I have MS

My friend had no lyme symptoms for a year after she got bitten and didn't get the rash either :/ in fact the tested negative first and had to request a more precise test to finally get diagnosed. They wrote it off as fibro at first.

 
Old 05-04-2011, 02:54 AM   #30
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darkling thrush HB User
Re: Worried I have MS

Hi Raj,

I was just wondering how you are doing?

Have you managed to arrange your private appointment yet?

You've certainly been given some food for thought by Beelucious. It's more than co-incidence - I think she's right - what are the chances of the Guelph connection?!

I'm still convinced I have MS (sad as that sounds), but I've always dismissed the idea of Lyme; but was reading something Littlehutton said on another thread about the joint cracking and other symptoms, and it's put a tiny seed in my mind - which could be dangerous with my anxiety levels just now! I do have the joint cracking, but not very bad, and dismissed the idea, as I can't remember being bitten. I did have an all-over body rash that only lasted a few days and was told it was a reaction to a virus, then had severe inflammation of the joints shortly afterwards, which lasted a couple of weeks - I've never thought this could be relevant to my current symptoms though.

Do you think we will ever get to the bottom of this? So many possibilites are presenting themselves - there must be so many people who go undiagnosed, because of this.

Well, take care, and don't worry about replying if you're busy - you have enough on your plate dealing with all of these horrible symptoms.

Bye for now, Jan.

 
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