For What It's Worth

[pnb]

I would like to offer you my thoughts. I understand that some of what you are about to read may be a little unpalatable but I hope my post doesn't offend.

I have been through what you are going through. You can find my ID on a few old posts.

Eight months ago (september 2004) I started my journey.

It began with tingling in my hands and feet. I looked this up on Google and became convinced that I had Multiple Sclerosis (MS)

I went to my doctors straight away and told him my fears. He didn't even examine me and sent me on my way.

Over the next eight months I experienced the following;

constant tingling in palms & back of hands for 4 months
more frequent stools
clicking wrist
insomnia
sore skin on inside of forearm
exhaustion
sensitive skin to clothes
burning circle sensation on arm
burning across lap
stomach pains
indigestion
diareah
back pains
arm aches
lump in throat
Warm sensation at bottom of leg
muscle twitches
random pin pricks on skin ( like tiny rain drops)
twitching eye
weight loss
weight gain
depression
kidney infection

All of these symptoms served to convince me further that I had MS. And not just "ordinary" MS but a fatal or at least severly disabling form of MS.

I also, at times, convinced myself that I had Cancer, ALS, Leukemia & Kidney failure.

At one point I spent the best part of a week lying in bed writing my will and letters to my children (3 & 6 years old) because I was convinced I was dying. My relationship with my wife was falling apart. My relationship with my children did not exist and my career had hit the skids.

Within a 4 month period I visited my GP over 20 times, the local A&E 5 times (once in an ambulance !), Two consultant neurologists at BUPA, I had a testicular ultrasound scan, blood tests and X-rays. I even contacted the MS society for advice !


Nothing, and I mean absolutely nothing, was found.


But the fear of MS was all pervading and I never found the reassurance that I so desperatly sought.

I am now better ( or at least 95% better ) and the solution was pretty simple.

Firstly, I stopped going to the doctor over each symptom that arose.
I decided not to resort to medication.
I bought myself a music keyboard and started writing songs.
I stopped symptom surfing on the internet.
I stopped looking at forums like this one.
I met up with a pschyologist once a week.
I started exercising a little.

The bottom line is you have to stop feeding your fear. The more you research, the more you join in with forums like this, the more you associate yourself with your anxiety. This is what you have got to stop.

It takes a great deal of discipline at first, but gradually, for me over a 3 month period, it gets easier and easier and life beings to return to normal.

There are a lot of well meaning, good intentioned people out there but, it's time to stand on your own two feet, time to be counted and to address whatever issues have brought you to this point. Ultimately, you can only do this on your own. You have a choice as to whether to see this as fear inducing or whether to see it as liberating.

All the very best wishes,

Paul.

P.S. I can recommend "The Linden Method" as I used this as the basis of my approach. The method is nothing particularly spectacular but the encouragement and supprt from their telephone helpline staff was worth the money on its own.

[kairen]

Hi pnd

good to see you are getting yourself together,


yes positive thinking is the way to go,

but some days are harder than others thats why we are all here to support each other,

take care


kairen x

[pnb]

Kairen,

I think positive thinking is putting it too simplisticly. It's about taking personal responsibility and making healthy choices about your behaviour and thinking.

For me, no amount of reassurance ever left me feeling reassured for more than 5 minutes. This is because when you seek reassurance from others one always tends to look for the exceptions to prove that your case is an exception to the rule.

In my experience, seeking and getting reassurance only leads to a greater need for reassurance.

Paul.

[kairen]

Hi Paul,

yes i understand what your saying everyone has to take responsibility for their own recovery,

I found this site when i would say at a point in my life that i am in control,
I have the odd bad day but very few and can control it, but having the support of the other members on this site, has helped me enormously, a lot of the symptoms i had i did not realize that other people had, and would not have told anyone else,

I got to talk to people who understood how i had felt, and most of all i do not rely on these kind people but have drawn strength and have learnt a lot from this site, and id like to think that i have helped other people for even the shortest of moments


kairen x

[alexis]

Dear pnb,
I am really pleased to hear you are better now.
I have never imagined I have an illness and it must have be awful for you, but I do have a lot of the other symptoms.
I did not surf for symptom solving, I did not visit the GP, I did not come on forums or even know they existed, but I did walk around out of control and extremely sad and panicky, (very much like a zombie sometimes.) I have walked around for approx 9 months fighting this, have been in denail, feeling a failure to mention a couple of ways how i felt, refused medication, counselling or anything.I never went anywhere other than work , and had not been able to vent my feelings in the fear people would think i was a whinge.
I then decided to accept this "illness" and went for counsilling.I then had this site reccommended to me by a professional, had a nosey and it has done me the world of good, I can say what I want where and when i want on here as I know everybody is in the same boat.Hopefully I can give as much help back as I recieve.
With encouragement from people on here and my gp and counsellor I have even managed a few hours social event.
There is a meet up of Present and past sufferers and I feel prepared to accept a challenge of the social gathering knowing if I go off on one, it doesnt matter, I am not the only one there who suffers, I will not feel a freak,
I do not dwell on this at all, but am greatful for the help Ive received and the lighthearted fun in the chat room, that has helped fill in some of my very empty nights, whilst I am unable to go out.I do not like using telephones to people I dont know so I am sure it is better here for me than ringing up for The Linden Method.
While I am in no means offended by what you posted I think we need to realise everybodies needs are different.
I hope in time to come Im posting a similar message to say ive recovered but also thanking for a place like this, and a kind understanding gp and 2 very patient counsillors.
Take care and I hope you continue to do well. Alexis.

[EmmaJane]

Paul,

Its good to know your on the mend.

I must say a site like this is good, for some people, just to know that they have people who understand and to realize that they are not alone. As there are people out there who do not have anyone to talk to.
This site i feel is a good place to start for some people as they dont know where to start sometimes.

Lets hope oneday all people on here can be in your situation, but for some its easier than others, and they need sites like this.





Feel free to PM me, if you want to talk.

Emma xx

Keep focused, keep positive.

[Meg]

Hi Paul,

In no way does this post offend and I am thrilled and join everyone in being extremely pleased that you're so much better.

The recovery journey is a personal one and as we know No size fits all perfectly.

I do have a couple of comments if I may...

None of your symptoms that you list could be mistaken for being actually immediately life theatening thus limiting some of the acute panic triggers that affect people and leave them desperate and needing support and reassurance right away.
I refer to things like acute breathlessness, tachycardia, sharp chest pain, irregular heart beat which people think is leading to imminent collapse and possibly death.

Your solutions essentially are similar to the philosophy that we advocate on here.
Rationalize the symptoms, distraction, get professional help and lifestyle changes.

Where I think forums like these are vital in starting off recovery is where people cannot access professional help in the early acute stages of their disorder, through GPs not referring, the postcode lottery for waiting lists, being housebound, not wanting to go public etc.

At those early stages people are floundering, feel completely isolated, terrified and uninformed about what is happening to them and needing so much to know that they are not the only ones and that it can be ok..

In essence, you had the resources to access both a psychologist and a telephone help line as your personal means of support instead.

I do agree that the time comes where, to enable continued independence and progress you grow out of the forum, help line and rely more on yourself and your newly learnt tools

**It's about taking personal responsibility and making healthy choices about your behaviour and thinking.** I completely concur with this, it is however very hard to do if you don't understand what’s wrong initially or have any tools within your tool box to use.

Thank you for posting- its good for all of us to see the diversity of symptoms, worries and paths to recovery. We have had other people concerned about MS and I’m sure reading your story in successes will benefit them

Meg

[nomorepanic]

Paul

I am very pleased to hear that you are so much better and well done to you on getting there.

I do think, however, that if I had the help and support of a forum like this years ago I would have been fully recovered by now and not wasted 11 years of my life suffering.

All I wanted was to talk to people like me and for them to understand and that is what I get on here.

Without this forum I would have never met all these lovely people and in particular Meg who has pushed me and supported me through all my driving problems.

I agree that ultimately you have to do it alone but isn't it lovely to come here and say "hey I did this and I did that" and get so many lovely replies that encourage you to go on and do more.

It has been a life saver for some people who are alone and have no support atall so I think that most people benefit from being on here.

I am not a lover of Linden I am afraid but I am pleased that you found it helped you - that is what matters really.

I hope you continue to improve and reach that final 5%. Good luck to you for the future.[:P]


Nicola