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Old 04-12-2011, 04:19 AM   #1
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raj1970 HB User
Worried I have MS

Hi All,

I'm wondering if someone can provide me with some insight. I'm from the UK and have been experiencing some strange symptoms.

It started in October 2010 after travelling back to the UK from Canada (place called Guelph). After a bout of flu, in the centre of my back, I developed an area of pain. From that point of pain, a thin strip of skin became hypersensitive to touch such that even if the shirt on my back brushed against it, it was extremely painful. My doctor suspected shingles but I didn't have a rash. The Amitryptiline I was prescribed didn't really help with the pain but in time (by the end of November 2010), the pain eased off until I was experiencing just mild sensations in my back (I don't know how to describe them!) but even those eventually went away.

I travelled to India in December where I came down with a very heavy cold and upon returning to the UK, I then went down with flu in mid-December. I was extremely fatigued, developed a nasty cough, had really bad chills and suffered terrible points of pains over my body but mainly in my legs - like I was being stabbed with pins and needles. The flu took much longer to clear up than normal for me. I continued to suffer unusual chills and a flu type feeling well into mid-January 2011.

Around mid-January, I started to redevelop the issues with my back, mainly mild tingling in certain areas, usually first thing in the morning. These were annoying but I found that with exercise (e.g., walking to work, going to the gym), the sensations would subside and stop completely. They would also stop if I was leaning back in a chair for example.

I suffered these back sensations on and off throughout January and into February but things have now become more scary.

Around mid-Feb, I developed more symptoms:

Tingling in certain areas of my hands and feet, predominantly my right side but also to some degree on my left side.
Tingling in my forehead, and down the sides of my face and around my eyes. This was bad and continues to be so.
The feeling that from half way down my right calf muscle to my foot was falling asleep or waking up from being asleep
Muscle twitching in both my calves, like they are bubbling and popping!
Cold patches in my thighs

At this point in the time line, the paresthesia was worse when I was at rest but usually subsided (or I didn't feel it) when I moved about, e.g. walking. The face tingling was really bad and constant but again, I wouldn't feel this for example, if the wind blew in my face or I touched my face in the areas that the tingling is felt.

I made an appointment with a neurologist who carried out an MRI (head and c-spine without contrast) and this came back normal as did all my blood work (this was 23rd February 2011). He stated that it was very unlikely to be MS but wanted to do nerve conduction tests next as clearly something was going on.

It's now mid-April 2011 and the paresthesia has been steadily getting worse. More of my right hand is affected by tingling and the same can be said of my right foot. The types of paresthesia that I am experiencing is also increasing. In addition to all the above, I now have:

As well as tingling, my forehead and the side areas of my face feel as though I have walked into cobwebs and/or there are fine threads running across them.
I also get this cobweb sensation on my right arm
A crawling sensation around the forehead and sides of my face.
I sometimes get a 'burst' feeling in the forehead area and down the sides of my face - like a little firework going off on the skin
I'm experiencing a lot of itching
I feel as though a drop of water is running down my legs (usually only in the morning though).
My right arm feels as though it is going to fall asleep

I experience this everyday and it's always the same areas of the body with new ones slowly being affected as I have tried to describe. It does not affect me at night at the moment.

To summarise, I'm at my wits end as things seem to be getting progressively worse and I don't know where I'll end up! I also appreciate that my symptoms are strange in that they don't bother me at night and, do subside if I move around or experience a genuine sensation in the area of my body that is experiencing the paresthesia, although this is starting to happen less now.

I'm not sure what I have - could it be MS? Could it be Lyme? - it all started when I came back from Canada and there is some disease out there. I suffered a lot of colds and flu's back to back - could I have severe inflammation of my nerves due to repeated viral infections?

I've read a lot on the forums here and other sites and have scared myself so is it anxiety now that is fuelling and amplifying the original symptoms? For example, a clear MRI doesn't really mean a lot as lesions don't often show up for sometime.

I'm sorry for the long post but I would really value an opinion as to what might be going on with me.

Thanks
Raj

PS - I've yet to have the nerve conduction tests as private health care in the UK is expensive. My referral to a neurologist through the state system will not be for at least 2 months!!!

 
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Old 04-12-2011, 11:27 AM   #2
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Re: Worried I have MS

Welcome Raj.

I would save your money and wait until you see a neurologist who deals with MSers. There are many things which could be causing your problems. 2 months is actually not a long wait because a good neurologist can take up to 6 months to be able to see.
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Old 04-17-2011, 04:46 PM   #3
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Re: Worried I have MS

Raj

The flu like illness and the back pain you descibe sounds like classic Lyme Disease. Was the back pain right between your shoulder blades?

Lyme is absolutely rife in Canada, do you ever remember being bitten by anything?

 
Old 04-18-2011, 12:36 AM   #4
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darkling thrush HB User
Re: Worried I have MS

Hi Raj,
hope you enjoyed your day in Canterbury and you had a chance to relax.
I think WarleyJack is right - you should get tested for Lyme disease. I'm no expert but have looked into it a bit since being unwell. I can't remember being bitten by an insect or having a bout of flu, so I don't think it applies to me, but from what you say about being ill on returning from Canada and India, you should definitely get it checked out.

I hope it's nothing serious, but please do get tested.

Speak to you later, Jan.

 
Old 04-18-2011, 02:19 AM   #5
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raj1970 HB User
Re: Worried I have MS

Hi Warleyjack,

Thanks for replying.

I don't recall being bitten by anything and I didn't develop the classic bullseye rash but I know in a certain number of cases, you don't experience that.

What I did notice in the area where the pain originated in my back after a while was a small circle of spots without any reddening so it could be Lyme.

The pain originated in the centre of my back, below the shoulder blades and just to the left of my spine. From that point, a thin strip of skin, running around to under my left pectoral muscle/breast became hypersensitive to touch. But this happened two weeks after I returned from Canada (I returned on 14/10/10) - if it is Lyme, wouldn't I have been feverish a few days after being bitten?

I will certainly push for a Lyme test (PCR and Western blot).

Again, thanks for your input and for taking the time to reply.

Cheers
Raj

 
Old 04-18-2011, 02:31 AM   #6
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Re: Worried I have MS

Raj

If you do decide to look into Lyme, ther are a few things you should know. Firstly, blood tests for Lyme are notoriously unreliable, if you test negative as I did 3 times, this doesn't mean you don't have it. Also most people do not remember being bitten, ticks can be as small as a poppy seed, therefore can easily go unnoticed, plus only a small amount of cases present with a bullseye rash.

Your symptoms sound very similar to my experience and I have had all of you symptoms, unfortunately it took me nearly 3 years to get diagnosed, simply because of unreliable tests and lack of knowledge from the medical field.

The only doctor who can diagnose and treat Lyme is an LLMD (Lyme literate medical doctor) there are only 3 in the uk, may I also suggest you google burrasscano guildlines which contain an extensive list of symptoms and information which may be useful to show your GP. It may also be worth joining the Lyme forum here and making some enquiries.

I do wish you the very best of luck, and I hope you find some answers soon, apologies if I have gone too far off topic on the Ms board!

Best wishes

 
Old 04-18-2011, 03:37 AM   #7
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Re: Worried I have MS

Hi Littlehutton,

Thanks for replying. I'm aware of how unreliable the Lyme tests are at the moment. I suffered pain when I came back from Canada in a very particular area on my back - my understanding is that there is no pain around the area where a tick bites.

Can I ask what your symptoms were, how they progressed and how you are at the moment following your diagnosis? Presumably they gave you a lengthy course of antibiotics?

If it is Lyme (and I do have some doubts), I worry that so much damage has been done in the time that I have been suffering that it's too late to cure it.

Thanks and apologies for asking so many questions.

Raj

 
Old 04-18-2011, 03:36 PM   #8
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Re: Worried I have MS

Raj

My first ever symptoms in 2008 were flu like symptoms, which kept going away and returning, I just did not seem to recover, I then went through bouts of fatigue and was falling asleep all over the place. I had back pain on my left side just below my shoulder blade which felt a bit like shingles pain, but with no rash. I still have this pain now, and it radiates around my side, underarm, arm and sometimes upper ribs, it can feel very inflamed. I started getting crawling sensations on my forehead, and sides of my face, and a fizzing feeling under my skin in various places. Palpitations and heavy legs, numbness in my left hand, eye strain pain, vertigo, burning skin, cold wet sensations on my legs and I remember being very itchy. These are the one's I can remember in the beginning, I have many others too.

I've been on treatment for 5 months, and making slow progress, but I have been ill for quite some time. If you are concerned I would definitely consider going to to an LLMD, unfortunately GP's or specialists have very little knowledge about this disease, and don't know how to diagnose or treat it. (I learnt the hard way).


I hope you find some answers soon,

 
Old 04-18-2011, 11:38 PM   #9
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raj1970 HB User
Re: Worried I have MS

Hi,

Thanks for replying.

My symptoms are getting worse now - arms falling asleep for no reason, particularly at night. My limbs are starting to feel heavy too . It does seem to fit the pattern of Lyme or it could be a very very unusual presentation of MS (in fact, the neurologist who I saw privately doesn't think it is MS. I have the referral to the NHS nerologist this Thursday so lets see what he/she says). I think I need to talk to a neurologist who specialises in MS and a LLMD.

I presume you had all the tests to investigate for MS and they came back 'normal' so they ruled that out?

You mentioned there are only 3 LLMD's in the UK. Could you point me in their direction?

Thanks for your help and taking the time to read my posts. Being in limbo-land when there is something horribly wrong with ones self is not nice as I'm sure you can relate to.

Take care

Raj

 
Old 04-21-2011, 07:12 AM   #10
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darkling thrush HB User
Re: Worried I have MS

Hi Raj, just wondering how your appointment went today. I've been thinking of you - hope you've got some answers to your questions, or will be having further tests.
Speak to you soon, Jan.

 
Old 04-21-2011, 10:18 AM   #11
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Re: Worried I have MS

Hi,

How are you?

The appointment today was not great. The neurologist that I spoke with is of the same opinion as the private one that I saw - I don't have MS and he didn't recommend further testing. In fact he was brutally honest and said it was unlikely we would find a cause. As a scientist, I don't buy the 'idiopathic' argument. He has prescribed drugs for the symptoms.

My plan is now to speak to an MS expert (privately) and then speak to a LLMD. If both say no, then I'm stumped!!

What have you decided to do and I do hope you are feeling better.

Take care

Raj x

 
Old 04-21-2011, 10:37 AM   #12
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darkling thrush HB User
Re: Worried I have MS

Raj, just read your message. My heart sunk for you. I know that feeling of being dismissed when you KNOW your own body. I've been offered loads of drugs for the symptoms - it's a cop out - they'll deal with treating symptoms, without finding a cause for them!!
One doctor once said to me - 'you know, we'll probably never get to the bottom of this' - I felt like saying 'yes, but only because you are being so obtuse!'
I'm not too bad today. I've even been to our local park with my daughter, a good 2 mile walk all in all. I felt wiped out this afternoon, but quite proud of myself too. I made the most of the fact I woke up feeling ok, unlike yesterday when the numb feelings didn't subside all day - even down my nose and cheek - which scares me.
It's really annoying that you have to go private again - an expense I'm sure you can do without. Keep fighting this, though. I'm with you about the idiopathic argument.
Keep your chin up. Bye for now, Jan.

 
Old 04-21-2011, 12:40 PM   #13
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raj1970 HB User
Re: Worried I have MS

Hi Jan,

No worries. It's what I expected despite a long and at times heated argument with him. I made him think though which I hope will help future patients.

I'm scoffing some red wine at the mo which is nice but I will suffer tomorrow. Whatever I have really exacerbates my symptoms!! That is, gives me hangovers of a level that I have never experienced before even after drinking lots more than I do at the moment!!

Take care

Raj xx

Last edited by moderator2; 04-21-2011 at 12:47 PM.

 
Old 04-21-2011, 02:14 PM   #14
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darkling thrush HB User
Re: Worried I have MS

Hi again Raj,

I feel like a regular on here now - I think I'm getting a bit obsessive, but it brings some comfort. You enjoy your wine, I've had a few chardonnays myself - I find it keeps me sane at the moment, but I'll probably feel guilty about it tomorrow:
I've never been a 'good' drinker - it effects me as I'm quite small, but my intake is becoming very regular. Never mind, just another thing to worry about.
Have a good night. Speak to you soon, Jan.

 
Old 04-22-2011, 01:38 AM   #15
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raj1970 HB User
Re: Worried I have MS

Hi Jan,

How are you today?

I'm feeling pretty ropey - far too much red wine last night!!!

Any plans for the long Easter weekend?

Raj xx

 
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