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PIP Review and change of circumstances - FND/MS?
3 years 11 months ago #259322 by chumsmum
PIP Review and change of circumstances - FND/MS? was created by chumsmum
Hi all wonder if anyone can help / advise
Firstly my PIP review was changed from July 2021 to July 2022 - I have however received the review form
I previously received Standard rate care - higher rate mobility - conditions - arthritis / anxiety / panic / agoraphobia / fibromyalgia
So in the last year my symptoms changed/worsened and my GP referred me to Neurology under the suspician I have Multiple Sclerosis.
Because of Covid my neurology appt was conducted by phone and i was diagnosed Functional Neurological Disorder. Its a long story but there was a lot mistakes i was then sent for an MRI where they found brain lesions .... again it was decided that these were nothing and it was FND - my hospital cant help and so discharged me but wanted a lumber puncture not done as yet ....
The letters I have from consultant are so confusing and some things are just wrong ...
Im ...
a) having extreme panic as if I show them the letters it says Ive been for my MRI and some appts - but I literally have to take sedation to go - few days before hand and double dose on the day I go .... I dont leave the house any other time and the hospital trips have been with my husband and a lot of upset tears and panic attacks.
Will I be taken off mobility for having gone to the hospital 3 times ?
b) should I just fill PIP review form in stating my new diagnosis and how things have changed and not send any letters
c) because there is still some query over whether I actually do have FND (my GP is furiously trying to obtain rehab for me without success and an FND specialist to confirm how it fits with me) should I mention it at all ?
Im not trying to deceive them in any way but my diagnosis due to covid has been very distressing .... my mental health has suffered even more .... Im still an unmet need as regards mental health treatment nothing has happened since 2017 on that point ...
having had no explanation of FND and told you have it go and read a website is awful and my husband and I are just trying to navigate a new way of life ??
Any pointers would be a great help - Many thanks xx
Firstly my PIP review was changed from July 2021 to July 2022 - I have however received the review form
I previously received Standard rate care - higher rate mobility - conditions - arthritis / anxiety / panic / agoraphobia / fibromyalgia
So in the last year my symptoms changed/worsened and my GP referred me to Neurology under the suspician I have Multiple Sclerosis.
Because of Covid my neurology appt was conducted by phone and i was diagnosed Functional Neurological Disorder. Its a long story but there was a lot mistakes i was then sent for an MRI where they found brain lesions .... again it was decided that these were nothing and it was FND - my hospital cant help and so discharged me but wanted a lumber puncture not done as yet ....
The letters I have from consultant are so confusing and some things are just wrong ...
Im ...
a) having extreme panic as if I show them the letters it says Ive been for my MRI and some appts - but I literally have to take sedation to go - few days before hand and double dose on the day I go .... I dont leave the house any other time and the hospital trips have been with my husband and a lot of upset tears and panic attacks.
Will I be taken off mobility for having gone to the hospital 3 times ?
b) should I just fill PIP review form in stating my new diagnosis and how things have changed and not send any letters
c) because there is still some query over whether I actually do have FND (my GP is furiously trying to obtain rehab for me without success and an FND specialist to confirm how it fits with me) should I mention it at all ?
Im not trying to deceive them in any way but my diagnosis due to covid has been very distressing .... my mental health has suffered even more .... Im still an unmet need as regards mental health treatment nothing has happened since 2017 on that point ...
having had no explanation of FND and told you have it go and read a website is awful and my husband and I are just trying to navigate a new way of life ??
Any pointers would be a great help - Many thanks xx
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