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Pre-Diagnosis (Some Reassurance Found)….

Hello to everyone :smiley:

Thanks so much to all those who have responded to my first post – ‘Pre-Diagnosis (a few questions)’. Your help and advice is much appreciated.

Like many, I am in a pretty confusing and lonely place right now, although I feel I may have just turned a corner and am feeling more positive (emotionally at least). :mrgreen:

I feel compelled to post this as it may help others:

In a quest for answers, I have ‘googled’ many of my symptoms and come to learn over time that I must resist this practise given some of the alarming and rather sceptical results that can be returned, often from unreliable sources.

I am active on this forum only because my GP (a professional) has mentioned the likelihood of MS as a diagnosis, I guess in order to gauge my reaction and prepare me for the worst.

HOWEVER, I find to my amazement that ‘most’ of my symptoms can be caused purely by anxiety. It seems that the mind is a powerful thing and can play some wicked tricks on you.

Google ‘Anxiety Symptoms, Anxiety Attack Symptoms (Panic Attack Symptoms), Symptoms of Anxiety’ and go to page held at anxietycentre.com.

I also find an absolutely inspirational thread on the subject that gives some hope and a more positive viewpoint pre-diagnosis. Just google ‘A Thread for Newcomers Worried about Multiple Sclerosis (MS)’ – this should offer a thread at anxietyzone.com.

Given all that I have read, I find it little wonder that a diagnosis can take so long based purely on the similarities between the symptoms of MS and anxiety, let alone all of the other possible mimics.

I for one know which diagnosis I hope to get - the ‘get out of jail quick card’ with anxiety will be nice :stuck_out_tongue:

To compound things, anxiety is of course a secondary effect of MS - therein lies a vicious circle….

As suggested in one of the threads, I have decided to try and deal today with that which is confirmed today and leave the doctors to deal with the unknown (i.e. I know and acknowledge that I am anxious hence will concentrate on overcoming this).

I really cannot comprehend how the professionals differentiate between symptoms in reaching a diagnosis and appreciate now that I need to be more patient, more respectful and place my ultimate and unquestionable trust in them. This is ultimately all I can do as a lay-person in all things medical.

I really hope this helps some who like me, have only recently embarked on this journey. Respect to all of those who have been in ‘limbo’ for an eternity – this thread in no way is intended to undermine.

Good luck and best wishes to everyone :wink:

GremlinInside wrote:
I really cannot comprehend how the professionals differentiate between symptoms in reaching a diagnosis and appreciate now that I need to be more patient, more respectful and place my ultimate and unquestionable trust in them. This is ultimately all I can do as a lay-person in all things medical.
If this approach helps you to make your way through the diagnostic journey then I wish you all the best and I hope it works really well for you. Unfortunately, experience has taught me that unquestionable trust is sometimes misplaced. The fact is that some neurologists could use a refresher course, the profession is rife with politics and ass-covering, and the NHS systems and budgets mean that necessary tests and treatments are not as they should be. I hope your experience proves different, but please try not to confuse trust with naivety. Sadly, sometimes the doctor does not know best.

Karen x

Good luck with your Dx, I would suggest keeping a record of anything ‘symptom like’ so when you go see the neuro you have all the facts at your fingertips. Whatever the eventual Dx you should keep hanging here for now - this place has given me much support in hard times!
Clarexxx

Hi Clare & Karen. Thanks again for your replies.

Appreciate where you are coming from Karen and have absolutely no doubt that I will experience similar thoughts and feeling if things drag on indefinitely. I am trying to stay positive for now though and am hanging on to any hope available for now for a better outcome han MS.

I saw my GP again today for a check-up. I had been hoping to get back to work tomorrow but have been signed off for another month. Again, my GP admits that he feels there is more to my case than just anxiety and he beleives my anxiety is a secondary result of an underlying condition which may have existed for some time.

I am told that I will be off to the Neuro again soon for another ‘poke and prod session’ (you know what I mean) :lol: I have also been told that I am not to drive until the Neuro has seen me and given the all clear :cry:

The pieces of the jigsaw puzzle are gradually fitting into place. I think my problems began in 1996. I’ve had a total of two stays in hospital and three visits to A&E since then, where I have been extremely ill with strange and unexplained conditions. On one occasion, Hodgkins Lymphoma was suspected and a biopsy was taken with no conclusive result - the illness eventually blew over. Conicidentally, this particular episode occurred just before I got maried (don’t take that the wrong way - my wife is wonderful :lol: ).

Other unexplained bouts of illness have occured over the years. Strangely, all either tie in with stressful events, extremes of temperatures (ie. sudden increases in heat) and holidays / time off of work.

My weird neurological symptoms did not start until June of this year, hence commencement of my current journey to diagnosis.

Who knows what the future will bring. I hope that someone will be able to digest all of my medical history, think outside the box (adopting a ‘holistic approach’) and have that eureka moment! :mrgreen:

Quote:

Who knows what the future will bring. I hope that someone will be able to digest all of my medical history, think outside the box (adopting a ‘holistic approach’) and have that eureka moment! :mrgreen: I’ve been thinking like that for fourteen years to no avail. There’s a vast shortage of neuro’s in the UK and clinics are often like cattle markets. I put my faith in neuro’s but over the years I now have concerns that some neuro’s can’t do basic neuro examinations. From early days my right arm has shaken. At first it was said to be easily distractible. MS specialist felt the spasm in upper arm and along with my legs said it was spastic tetraparesis. A neuro last year said it was an intention tremor. I’ve had a right positive babinski in my big toe for years. A neuro last year tested me with tight socks on and said it was negative. Two Dr’s examined me this year and it’s positive in both feet. My eye problems were put down to pailloedema, then retrobulbar neuritis, now optic atrophy. A neuro two years ago argued with me that I can’t have loss of vison as nothing showed on my MRI. I’ve had a loss of vision for fourteen years. All she had to do was to examine my eye, but no she sent off for my VEP results from fourteen years ago. Over the fourteen years I’ve had retrobulbar neuritis, optic atrophy, spastic tetraparesis, spastic paresis, nystagmus, ataxia. I have bladder and bowel problems. I have diagnosed chewing and swallowing problems, I’m skeletal and I see a speech/swallow therapist. I also get slurred speech. Fatigue and pain are with me daily as are gastro problems. I get autonomic symptoms that I wouldn’t wish on anybody. My first hospital admission told it was demyelination, two years later ME, five weeks later MS. Then last year I had a probable diagnosis of a rare hereditary neurogenetic disorder which there was a 50% chance of passing onto my daughter. Six months ago I saw a team of Dr’s who told me they would get me as near to a diagnois as possible. I haven’t had reults or heard anything since so now once again I’m going to have to chase things up. It took eleven years for any neuro to suggest a full spinal mri despite me showing upper motor neuron problems and having to use a wheelchair. I’ve never had an MRI with contrast. My last VEP’s were done in 2001. Basically for the past ten years I’ve had MRI’s and blood tests. What is more appalling there are quite a few of us here in the same situation. The longer you go on with neuro symptoms you tend to get pushed to the back of the queue. I feel they see the wheelchair and the damage is done. My Opthamologist just says there is nothing we can do about your loss of vision and then gets excited about stem cells. :roll: I really hope you do find that wise man or woman who has that eureka moment. If you do can you pass their name to the rest of us. I’ve been up since 4am as I don’t sleep well and I read your post about reassurance and hope. I remembered that feeling and suddenly realised it’s something else I’ve lost. :cry: Jacqui x

@ Jacqui: Every time I hear or even just remember your story, I am moved to both tears and fury.

It disgusts me that the medical profession hasn’t done more for you.

Love and ((((((((((((hugs)))))))))))) which I swear I will deliver in person one day!

Karen xx