Advice please

[Jaye75]

So I got diagnosed 2 weeks ago after 6 years of symptoms which was diagnosed as fibromyalgia/hypermobility/sleep apnea and hypertension over those 6 years but I was never happy with diagnosis as I had a lot of neurological pain and symptoms (memory and cognitive thinking being the worst) the past 3 years my gait and balance became an issue along with left sided tremor and weakness. So what I need to know is I claim pip and have always been rejected for the mobility award, should I report my new diagnosis to pip now I have evidence that I am affected via gait &memory issues as I have put this in my past application but always told there was no proof to back this up?

The other thing is my actual diagnosis letter states "likely fnd symptoms " as at the time I was awaiting mri brain scan which has bow came back ok, do I ask the neurologist to send me a letter confirming diagnosis?

I'm very confused at what to do regarding pip as I would really appreciate help with getting around even if it's just a reduced fare bus pass I would be grateful

[210272]

Neurologists can't diagnose FND on the basis of normal scan results alone so I ask your consultant why he thinks you have 'likely FND symptoms' IE what 'positive signs' you have that fit with the current criteria. Hypermobility isn't 'functional' as far as I can tell and I am aware that people with a fibromyalgia dx have often been 'lumped' under FND although I think the new research into fibromyalgia suggests that it's not a mental health condition.

With PIP the diagnosis makes no difference, it is all about the severity of symptoms and how they impact your life. I would ask your consultant for a letter that details your mobility issues and your cognitive issues (which may be 'cognitive vestibular interactions', given your gait and balance problems) and then go to citizen's advice (or a similar agency) for help with reapplying for the mobility component. I hope you get it and wish you all the best.

[Jaye75 in reply to 210272]

I should of explained better, functional weakness left arm and leg positive tests, photophobia with phonobohia, dysarthria,migraine left sided, romberg test positive, anxiety, hesitation stopping and starting gait with unsteadiness, nausea, food smells and tastes very different for past 4 years, entrainment tremor with a little distraction at times, action tremor (left sided) difficulties swallowing at times. Fatigue after normal daily tasks, daily brain fog. Basically what it states in my letter. I've had bloods done for deficiencies including B12 also Thyroid. Scans (mri, pet,ultrasound for multiple areas) brain mri spine mri I've other things done but I can't remember atm as it's been ongoing for a while with diagnosis.

I will see my gp and ask for a letter to explain the diagnosis, I'm awaiting physio to help with my balance and gait, 1 thing I have noticed is if I concentrate more on trying to move it makes it worse I dnt understand why this happens it's so frustrating that any exercise I try to do makes my problems worse ...all I want to do is try to be healthy and fit at some level.

[210272 in reply to Jaye75]

I don't think a positive Romberg test should be used to indicate FND. You might want to look at the new(ish) Genetic Alliance UK Good Diagnosis guide to help assess how your diagnosis was given. I hope your GP will help get the dx explained and that your migraine is being well managed. Hopefully your physio will be able to explain why concentration on movement can make things worse for you.

[Leesaloo]

hi jay. For gait issues I had 1 month inpatient rehabilitation for FND at a hospital in London. For me placing my heels down first stopped my left leg dragging and helped with hesitation as well, something so simple made soooo much difference to my walking it was unbelievable. Hoping it can help you too.

[Jaye75 in reply to Leesaloo]

That's great I'm hoping I have the same experience I'm just waiting for an appointment I'm really curious to which way it works

[Borrow]

Hi,

PIP does not usually consider the cause of disability/illness/condition, only the way they affect you. You need to explain about how your daily life has changed, how much pain you have, what equipment/help you need to do things and you must mention these on the worst days! Every problem you have must be mentioned in detail and you must be honest even the embarrassing problems, also write how each problem affects all the others and write these in each section. I find writing the PIP extremely hard and depressing as normally I try to think on the positives not the negatives ‘to keep going’ but NOT on the PIP form where you have to write the negatives! However you must not exaggerate as they do check! Finally add your doctor’s/consultant’s prognosis. Good luck!