please help help help

[weeme]

im currently waiting on a private appointment (from uk) ive been unwell for the last year with  severe muscle weakness (affecting my neck and chest with problems swallowing etc), breathing problems, costochondritis, numbness down right side ( with blue cold fingers) , dizziness and problems with my eyes (blurry vision, trouble keeping them open)
im going crazy wondering what this could be and also wondering if i really am going crazy

is there anyone who can help here
ive already posted a question and nobody answered
i would really appreciate some help asap and dont want to waste money paying private if im worrying about nothing

ive already had a dx of possible m.e but i feel there is something else going on!!

[cazza1964]

Hi Weeme,

My God that sounds so familiar.  I underwent a phsycological assessment. 3 hours in fact!
I too was told emotional stress from past and present was presenting itself with physical conditions and yes there is a condition call Soroform Disorder. The symptoms are real but are being caused by stress.  It was terrifying for me cos I have issues from the past and I did not want to confront them but I did as I was asked and went for the assessments.
The final outcome? Well I am mentally very well I do not have enough clinical evidence to have this Soroform Disorder and I needed further medical tests.

At this point I wrote to a private Neurologist who had treated me before for something else sent him a copy of the letter from the psychologist and I am seeing him next Friday.  (18th Sept).

My symptoms are, loss of balance, facial spasms, double vision, slurred speach, poor walk and extreme fatigue. (Amongst others). They are not all there all of the time, each symptom varies from day to day.

Just as an aside my friend has M.E. and she has never ever mentioned the symptoms you describe?  She was referred to an M E clinic for exreme fatigue, headaches and facial pain.

Find a Neurologist.  Google your local private Hospitals and see who they have. You can look at their experience.  Speak to a sympathetic GP. You must make a nuisance of yourself.  Take a friend/relative with you and write everything down.

If you want to let me know your email address and we can keep in touch via email.

Keep me posted.
Cazza
x

[weeme]

hi

thanks for replying

some very useful things in there to try i will give them a go and see if they help

i will let you know how i go

weeme

[hava]

This is something to help yourself. Start with whatever time you can spare.Drink warm water, and stop cold drinks. I will help and monitor your progress.
This is the free alternative treatment for MS or if you are having MS symptoms. Do it and you will know and feel improvement in quality of life.You can also do it alongside any medical treatment.
You need to help your body to build up your immune system.The breathing exercises - pranayam is a holistic approach creating extra oxygen supply in the body and will slowly help with the health problem.Do the pranayam to see the benefits.Build up your timing slowly and after four weeks at the suggested maximum duration you will start to notice benefits gradually.If you feel tired or dizzy,stop and resume later.
What is known: pranayam helps the body heal itself. How it works in the body is not known – but people may build their own theory. You have to do it yourself for your benefit.
The small print: Keep doing pranayam after you are better for minimum 30 minutes a day for rest of life to maintain health.

People who have been treated successfully, should do pranayam as well, as there is a chance of recurrence.

The pranayam techniques:
Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Duration upto 5 minutes.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 20 to 30 minutes twice a day. Not for pregnant women. Seriously ill people do it very gently. If you feel pain, do not do this.

Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 10 times

Only by doing you will benefit and will feel good that you can do something to help the body.Copy and print this to improve your technique and stay focused.This is  simplified pranayam for everyone and you do not have to go to classes to learn. This is for life, unlike short term classes where you do it in the class then stop when classes are over.

[weeme]

hi cazza

thanks for replying

ive had a lot of ill treatment from doctors too

and i dont have insurance so i am having to pay for private appointment myself and as a single mum of 2 kids its not easy but i need to try and get to the bottom of things.

the neuro i saw on nhs gave me about 5 mins to explain a year of symptoms then asked me to be quiet then he done a 5 min neuro exam said everythings fine and he thinks i have M.E then he gave me a web address told me to go home and look at it and help myself feel better.  When i got home i looked it up and it was a web site for Functional disorder (which in un-politically correct terms means im mad!) in olden days it was called conversion disorder meaning im putting hsychiatric symptoms into physical ones!! (charming)

i cant understand how anyone can imagine their hand going blue, numb and cold but hey who knows? and i dont think M.E causes those symptoms either?!

keep in touch and let me know how you get on finding a diagnosis (what are your symptoms?)

thanks

weeme x

[cazza1964]

Hi

I too am from the uk, and I have a number of neurological symptoms the same as yours.
I started out with the nhs but was basically sent me to a mental health department.
They have now said I am mentally well !!
I have been treated previously by a private neurologist for a different matter.
I am now being seen by him on the nhs again.
The problem is alot of private hospitals do not have the neuro facilities needed for all the investigations and the private rooms quite rightly are taken up by the very serious patients so in that respect it is better, I am advised to go nhs.
Private neuro consultants are very expensive and so are some of the scans and tests.
My insurance company will pay for all that but if a long term diagnosis is made they will not pay for life long treatment so I would have to go to the nhs anyway.
Stuff like this is so difficult to get a diagnosis on and its very very scary.
Try and find a neuro consultant you trust for an initial consultation, and then consider all your options.

I hope this helps a little.  I so understand how it all feels.
Cazza