Old 12-25-2011, 08:56 AM #1 (permalink)
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Default Help required.

Firstly can i say i have read all of the stickies that the site have advocated.

I fully understand if i dont get an answer, especially as im posing this at 2pm on christmas day.

I have written, perhaps quite selfishly, quite a long post. My genuine gratitude goes to anyone who spares the time to read, let alone reply.

I am a 41 year old, previously extremely fit / healthy male from the UK.

At the beginning of August this year, i became ill with flu like symptoms, tiredness, general malaise, low grade fever etc. I also had recurring perfectly round mouth cankers. I couldn't shake this off and visited my GP who took loads of blood tests. Shortly after i began getting really intense pains in my lower right rib area. It felt like my liver was twice the size it should be. What really stood out to me though was a tremor in both of my index fingers. The tremor was an evoked response, caused by use of a mouse or similar everyday function.

My liver was scanned along with spleen and kidneys. All normal. My bloods all came back fine, with the exception of raised Epstein Barr titres. My GP told me this was probably a flair of an old infection. Although i got the impression he didn't really know what was going on.

September came and went, as did the illness, some days didn't feel too bad, but most times i felt at best "wrong". October was the same, no improvements / changes.

in November i started to take olive leaf extract, L Lysine and milk thistle in an attempt to support my failing body. I revisited my GP, who did more blood, all still fine.

In mid November i began to feel incredibly dizzy / lightheaded and noticed a ringing in my ears (tinnitus) along with some minor cognitive issues like seeing letters the wrong way round.I was also getting really odd and and random muscle twitches / spasms in various parts of my body. I also had a really spaced out, wooly head feeling, really difficult to describe.

I ended up in the emergency dept. Of my local hospital on three consecutive evenings. I was assessed by three different Drs, more blood and head CT scan. All normal.i then went on to see 2 further drs on a ward. They could find nothing. The next day i went to see a neurologist who gave me the most thourough work up ive ever known... He could find no abnormalities.

Since then i have had more really odd symptons / sensations. Ive had some strange feelings on my tongue, almost like numbness, or if there are hairs on the tongue or throat. the twitching / spasms come and go absolutely everywhere. Ive had some crampy feelings in various parts of my legs and feet and a feeling that my ligaments are shortening. i sometimes get a feeling that something is crawling on my skin. I also sometimes get a feeling that someone has flicked water at me. The tinitus has been a permanent fixture. The most bazaar thing though is above my left eyebrow... When i raise it, it feels odd and then feels like momentarily it doesnt drop down when i stop raising... Like i said, bazaar.

I have been back to my GP. He has listened, examined and says he can find nothing wrong. I have seen SEVEN doctors and a neurologist Doctor since November.

More recently, in the last three to four weeks, my arms have felt different, sometimes heavy, weak or cramped. If i make a fist and use power my entire arm tremors.

The twitches \ spasms have latterly grown much worse. They appear all over the body, in particular my arms.

My doctor here in England is a fab chap, but is insistant that i am suffering from anxiety. Its like he cant see past that to see anything else.

yes i am anxious, but i would doubt anybody who has felt ill for a long time wouldnt be.

I have arrived on this site by internet recommendation.

I am awaiting results of an mri ordered by a neurologist back in november... I could tell he ordered this in an attempt to plicate me.

Thank you for your patience in reading this. Any advice or thoughts are most welcome.

Happy christmas.
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Old 12-25-2011, 11:16 AM #2 (permalink)
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Default Re: Help required.

Dave, first of all you do not have ALS or MND as they call it in UK. There is no doubt at all about that. You do not have even one indication that points you in that direction.
It is possible that you had a post viral syndrome that has left you feeling anxious, which has in turn completely taken over your thoughts. None of your symptoms sound particularly serious or disabling, so I am perplexed as to why you are so hung up on the issues. Your doctor is probably thinking the same and therefore you have the "anxious patient" label.

The feeling of reading words backwards, fuzzy head etc, may be symptoms of an atypical migraine. People have these symptoms without getting the actual headache. That could explain why it went away. They can be mistaken for Transient ischaemic attacks, hence why you probably had a head CT?

My guess is, with no untoward blood indicators showing anything, other that a virus has been affecting you, that things will right themselves in time. You need to stop obsessing and get out doors doing gentle exercise and taking in the fresh air.
What I find helps me get exercise, is thinking and praying for the dear people on this forum, who are dealing with so much worse than me, with kindness and bravery. Try it.

Hope your Christmas day was lovely.
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Old 12-25-2011, 01:08 PM #3 (permalink)
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Default Re: Help required.

Thank you for being ao kind as to reply, eapecially today.

I really dont obsess... Ive been bought here in an attempt to find out what us going on.

Believe me.when i say that prior to August i was one of those obsessively fit people, running and gym work are my lifes passion (after my beautiful children and family).

Im sure like others having heard so many fob offs and BS from docs,
I have cast my net a little wider. the tremors, twitches and my perceived weakness have bought me here in an attempt to broaden my knowledge and understanding.

I suppose i have divorced the earlier part of my illness and am focussed more on the latter weeks events.

Thank you for reading and replying. I hope i have caused no offence.

Best wishes.
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Old 12-25-2011, 04:16 PM #4 (permalink)
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Default Re: Help required.

"My bloods all came back fine, with the exception of raised Epstein Barr titres"

I would check to see if these are still raised, perhaps the gp doesn't really know what to make of this... I think you probably had some sort of virus, and perhaps a lot of these sypmtoms are remaining from them? I'm assuming an inner ear infection was ruled out by gp #1...

How are your blood levels for vitamins? Do you take Vit D and B12? Do you have any increase in CK levels that would indicate muscle issues? The good news is that I really don't think that these are indicative of early ALS symptoms, though obviously something is going on.

Good luck, and Merry Christmas.
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Old 12-25-2011, 05:12 PM #5 (permalink)
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Default Re: Help required.

Quote:
Originally Posted by englishdave View Post
Firstly can i say i have read all of the stickies that the site have advocated.
You may have read them, but it is completely certain that you did not understand important details in those stickies. Reread " Some Advice to Questioners, from An Answerer". Items 1-3, 6, 8, and 9 apply directly to your case.

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Originally Posted by englishdave View Post
I have written, perhaps quite selfishly, quite a long post. My genuine gratitude goes to anyone who spares the time to read, let alone reply.
You can remove the "perhaps" and replace it with "absolutely, totally, completely, and obsessively" as the appropriate modifiers for "selfish".

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Originally Posted by englishdave View Post
I have been back to my GP. He has listened, examined and says he can find nothing wrong. I have seen SEVEN doctors and a neurologist Doctor since November.

[...]

My doctor here in England is a fab chap, but is insistant that i am suffering from anxiety. Its like he cant see past that to see anything else.
The blindness here is on your part, not your GP or the other doctors you've seen in the past two months. Once again, reread items 3 and 6 in the "Some Advice to Questioners, from an Answerer". You are the very definition of the type of questioner being addressed by those two points in that post.

Quote:
Originally Posted by englishdave View Post
Thank you for your patience in reading this. Any advice or thoughts are most welcome.
Fill up a five-gallon bucket with ice and water and then soak your head in it. The heat inside your skull being generated by your out-of-control anxiety is frying your cognitive circuits.

Hope the rest of your holidays are better for you.
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Old 12-25-2011, 05:16 PM #6 (permalink)
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Default Re: Help required.

It may not be a good idea to divorce the earlier part, especially as it was viral.
To see 7 doctors since November is in fact, incredibly obsessive. Drs seeing this history will indeed fob you off. Most people would be a little more patient.
You have not offended me at all and I hooe with time, everything will come right. Your set of symptoms are incredibly common here on this part of the forum. Let time do it's thing and keep the exercise up as much as possible.
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Old 12-25-2011, 06:06 PM #7 (permalink)
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Default Re: Help required.

Firstly, im amazed to have received replies from my post so quickly on christmas day.

Thank you for the advice and candor. It is appreciated.

I feel like i need to clarify a couple of things which have come up.

In my post i have stated i saw 7 doctors and a neurologist... This wasn't due to me wondering around a hospital pestering every white coat i could locate. It was because i was passed from pillow to post by doctors who scratched their heads, put my symptoms in the "too hard to deal with" box and sought a chain of command to pass me along.

Secondly. I do not feel like i am suffering with anxiety. I am a serving police officer , i see anxiety and stress EVERY single day of my service. I have never suffered a health anxiety before. Ipso Facto i do not believe this is being caused by anxiety.

Thirdly. You must clearly get some time wasters visiting and posting on your sight. It is clear from the curt and obnoxious reply i have received that i am perceived as being such a person.

I appologise for looking for answers. I'll bury my head in the sand like the millions of people who do not seek treatment when they should and then moan when its too late. That'll be the way forward!

Thanks to those who have posted with helpful advice. However it is clear that people like me would be better placed sticking my head in a bucket of ice water rather than darken your door.

I wish you all a peaceful Christmas.
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Old 12-25-2011, 06:51 PM #8 (permalink)
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Default Re: Help required.

Dave please don't take offense. Allen (trfogey) is our in house expert in this section of the forum, and is one of the few to take time to answer questions. He does have a bit of an Andy Rooney approach ashe wants people to really read the stickies and not jump to conclusions. He doesn't have use of his hands any longer so when he writes to you he has put real effort into replying to you. I think he might enjoy a sassy response back from you to his "soak your head in a bucket of ice water" versus you disappearing in a huff. You being a police constable must be used to much worse than being told to go soak your head eh? <g>. Merry Christmas Dave and hope to see you sassing Allen in good fun.
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Old 12-25-2011, 08:25 PM #9 (permalink)
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Default Re: Help required.

Quote:
Originally Posted by englishdave View Post
In my post i have stated i saw 7 doctors and a neurologist... This wasn't due to me wondering around a hospital pestering every white coat i could locate. It was because i was passed from pillow to post by doctors who scratched their heads, put my symptoms in the "too hard to deal with" box and sought a chain of command to pass me along.
You're quite the mindreader, aren't you?

Your symptoms aren't hard for your doctors to deal with, because apparently you don't have any. At least none of any organic origin, anyway. That's what your doctors are telling you. Why don't you give us a list of those symptoms that you have where you said "Doctor, I have this" and the doctor said "Yes, I can see that you have it"?

What you have described in your treatise above is equivalent to your being called out to a crime scene and finding a man who claims he has been stabbed with a knife, but has no wound on his person and no holes in his clothes. How would you characterize that man?

Quote:
Originally Posted by englishdave View Post
Secondly. I do not feel like i am suffering with anxiety. I am a serving police officer , i see anxiety and stress EVERY single day of my service. I have never suffered a health anxiety before. Ipso Facto i do not believe this is being caused by anxiety.
Some of your doctors do believe you are suffering from anxiety, and they know just as well, if not better than you do what anxiety looks like and the conditions and symptoms that anxiety can produce in the human body. You might come off of your arrogant attitude and consider that you've got something on the order of a century's worth of medical education and experience telling you that you're wrong.

Quote:
Originally Posted by englishdave View Post
Thirdly. You must clearly get some time wasters visiting and posting on your sight. It is clear from the curt and obnoxious reply i have received that i am perceived as being such a person.
Yes, I perceive you exactly that way. Starting with the title of the original post, coming through that bloated exercise in hypochondriacal mental self-pleasuring in your original post, and finally to the post from which I am currently quoting.

You're not used to having people tell you that you're wrong and you don't tolerate it very well, do you? If it's that plain to me, it must be blinding to encounter in person. Which probably explains why you keep getting passed to new doctors -- who wants to be stuck with the responsibility for dealing with an egocentric and irascible lout like you?

Quote:
Originally Posted by englishdave View Post
I appologise for looking for answers. I'll bury my head in the sand like the millions of people who do not seek treatment when they should and then moan when its too late. That'll be the way forward!
Very dramatic! You must have been quite the thespian in your primary school days.

The bottom line is that you have been evaluated by a neurologist who finds no neurological abnormalities in you. This is a forum for support for people who have a number of neurological disorders. You don't have any of those disorders. So, why are you here?

Show me three symptoms of MND that you claim to have and that your neurologist (who is also a doctor, by the way) has verified and then we have something to talk about. Until you can do that, you're wasting your time looking here for answers.
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Old 12-25-2011, 09:52 PM #10 (permalink)
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Default Re: Help required.

Ok so you say that you do not suffer from health anxiety, yet you readily admit that you have seen 7 Dr's & a neuro (fyi - Neuro's are Dr's so you have seen 8 Dr's) and more then one of them has told you that they can not find anything wrong with you. Yet here you are on Christmas day channeling Geoffrey Chaucer as you explain to us symptoms that are highly questionable and most certainly are not indicative of ALS. Oh by the way in your original post you stated, "yes I am anxious", I would define this from my non professional perspective as classic health anxiety. (for clarification I am not a Dr)

You even stated that a Dr prescribed an MRI for you to placate you. Think about that, a medical professional had a unnecessary, expensive test done on you for no other reason then the fact that you do not believe him when he tells you nothing is wrong.

I think that sums it up, take a timeout and really think about that. You do not have ALS, based on what you described to us, I am certain of that.

Last edited by TedH5 : 12-25-2011 at 10:05 PM
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Old 12-26-2011, 11:00 AM #11 (permalink)
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Default Re: Help required.

hi dave.
Mr T has a unique way with words (his posts can make me cringe and laugh at the same time)but he is never ofton wrong ,tells it as it is and devotes alot of time and energy to this part of the forum.............his bark is worse than his bite lol..........i just love him.
sounds like you could have post viral syndrome and hopefully over the next months you will feel better.
happy new year to you.
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Old 12-26-2011, 12:56 PM #12 (permalink)
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Default Re: Help required.

Thank you to those people who have answered genuinely, especially over the holiday period.

I'm not going to enter into a mud throwing contest with those who have taken umbridge to my enquiry. You have truly been unhelpful and have no right to make personal insults about people who you have no knowledge of. But if thats how you derive pleasure then hay, im broad minded enough to accept it.

Perhaps some final feedback... May be you should do away with this part of the forum, or re-name it something like "Although i have not been diagnosed, i am 100% sure i have this condition" - May be this way you will capture bettter the audience you require.
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Old 12-26-2011, 01:11 PM #13 (permalink)
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Did you have an EMG?
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Old 12-26-2011, 01:12 PM #14 (permalink)
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Default Re: Help required.

I really just love it when someone comes along, doesn't like the answers and then proceeds to tell us how to run the place. The cheek.

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Old 12-26-2011, 01:35 PM #15 (permalink)
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No common courtesy. Simple.
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