PIP award review...........advice

Hi Gordon, I have now completed the PIP review form. I have used 6 pages to cover all the questions, do you think that is excessive?

Also, I wonder if you could look at my answer/statement for q13) Is there anything else you think we should know? Is that the right place for it? is it relevant? you dont have to show it in its entirity. I just need your personal opinion.
Q13. Is there anything else you think we should know about your health condition or disability..........................
The history of my Neurological condition began in 2005/6 approx.
However, prior to this I was diagnosed with Epilepsy in 1997, after i suffered several grand mal seizures in a short space of time (months) also, suffered Statue Epilepticus. I was prescribed Epilim, which did help, but still had the "deja vu' sensations, and still do today. I was told much later by the Neurologist, that my Epilepsy was almost certainly due to the Neurological Disorder I had.
I no longer take the Epilim, after 12+ years of taking it, I found the side effects just too much. The 'Deja Vu' sensations were not helped at all by the medication.
It started with tingling in my limbs, with accompanied intermittent pain and numbness. I went to my GP in 2006 ( i think) After examining me, sent an urgent referral to the Neurologist at Hope Hospital, Salford.
After many tests, and a short hospital stay I was diagnosed with MS, and assigned an MS Nurse . I was given Intravenous steroids over 3 days, while this helped, the side effects were horrendous. Later, i think 18 moths- 2 years after the IV steroids, I had another 'flare up' of symptoms. This time I was given steroids over a longer period in the form of tablets. This was a tapering dose, over 6 weeks. This again, helped, but the side effects were unacceptable to me.
Since my diagnosis of Osteopenia, I have had no further steroid treatments, as i think the balance of risk to my bones is too much, especially when the steroids can't get rid of my symptoms, just speed up recovery after a 'flare up'. My Neuologist was in complete agreement with my feelings.
Immune suppressant medication was discussed by my Neurologist and myself, but, we both agreed it would not be the best option for me. The side effects can be toxic and damaging, in addition, can cause Seizures, : in people with a history of seizures its more than likely than not.
Over time my symptoms have become more constant i.e. pain, discomfort and fatigue, with 'flare ups'. I am reviewed by the specialist, on a regular basis : 9-12 months.
The Neurologist says it is a Neurological Disorder of the central and periphal nervous system, that is of a slow progressive nature.
I last saw my Neurologist in August 2018, previous to that, December 2017, on average every 9-12 months.
My next appointment is 10th May 2019.
At my last appointment, he explained that the disorder is of a slow progressive nature, that will have stages of plateau, treatment is limited.
I apologise for the length of my statement and answers, I just wanted to answer all questions as fully as i possibly can.

Finally, I would just like to take this opportunity to thank you and the team for always being there for us all...............appreciated much more than you realise.

Littlenell

Hi Gordon,

I see what your saying, but, i thought because i had already answered all the PIP activities on separate sheets, i would just give some history. Should i not include the last sheet.

thank you

Hi Gordon,

Could you please cast your professional eye over a couple of my answers for my PIP review form.

Q1) Preparing and Cooking Food
My husband continues to all of the preparation and cooking, as my condition remains unchanged.
I continue to feel daily pain and fatigue on some level, along with'flare ups', which on average is between 2-5 days a week, where the pain is severe. The nerve pain continues to make it too difficult, unsafe and exhausting. The pain includes sensations of: numbness , stiffness, cramp, pricking ,pinching , knawing, freezing cold sensations, in limbs, hands and feet.
I also experience a very strange, distracting and frightening sensation where I will get a feeling of tingling and numbness, I will know if it's an arm or leg, but just cannot tell which one, then I will be totally unable to move the affected limb. It's as if I am temporarily paralysed.
It used to take me so long to actually prepare a meal, it left me so tired I would go for a rest, which very often resulted in a burnt meal. I also had several accidents, burning myself, smashing glasses and plates, either because of a suddenly 'electric shock type pain, numbness or just exhaustion.
The assistance of a specialist peeler and a chair didn't help much with the preparation of food, as I still had to hold the peeler and sit for long periods. I had problems with timings due to fatigue and lack of concentration, which was all made worse by my medication. Although I can still get 'manageable days' this activity, I found to be utterly exhausting and unsafe, not to mention taking such a long time.
If I did manage to prepare and cook a meal it could take as long as 2+ hours, my husband could easily do the same meal one hour or less, so, my husband took the decision to take over completely. Having even background pain, constantly, is tiring, but when its unrelenting and severe, it's totally exhausting, taking pain killers only work short periods, so, when I am
experiencing severe pain, I have maximum dose of Tramadol, which just leaves me very drowsy and nauseous, at these times, I just go back to bed, this happened approx 3-4 weeks ago, and lasted 8 days approx.
Many years ago, I was diagnosed with Epilepsy, with grand mal seizures, I also had Status Epilepticus, where I had one fit after another, without coming round, which caused me to be unconscious and fitting for a long time.
I do still get strange sensations, which my specialists described as 'deja vu', these are not painful, but, leave me feeling extremely strange and confused, and not sure what has happened, these can last from seconds to minutes, my husband does notice when this happens, he has tried talking to me during the times, but he says I do not hear him. When the feelings pass as well as feeling confused , I feel sick.
My Neurologist had said the Epilepsy is in remission, which is a positive, however, that indicates that I am not cured, and I could have a seizure at any time, I feel personally if I had one in an area such as the kitchen where food is being prepared/cooked would be extremely dangerous for me.
If my husband has to go out for any length of time, he always leaves me prepared food....usually sandwiches and a drink. Breakfast is always a smoothie, which he prepares from fresh.


Q 12 Moving around
Again, no change in this activity, I still have pain and discomfort whatever the distance is. This again, is due to Neurological Dysfunction, Please see Neurologist reports.
An rough approximation of when pain and discomfort worsens is around 30 meters. I will get increased cramping, burning, numbness, stiffness, stinging and itching through the right side of my spine and back, that radiates round to my right abdomen and over and underneath my pubic area and down onto my legs.
My feet are mostly numb, cramp and stiff, this seems to make me walk 'stompy' and deliberate, I cannot explain it any other way.
I experience a sensation of walking on 'pebbled ground' even though the path is an even surface, which makes me feel unsteady.
The difficulty, pain and discomfort of walking causes extreme fatigued, so, I always have to rest or sleep when I get back.
I have a fear of falling after a few stumbles and falls, none have been serious, apart from a few bruises and soreness, but my main concern is breaking a bone, due to a diagnosis of Osteopenia, which was previously diagnosed as Osteoporosis. I do not use a stick, my arms, hands and fingers get too sore , numb and stiff.
Due to the above diagnosis, my GP and Neurologist stated that I need to be as active as possible, walking is the best weight bearing exercises I can do for myself. So, this is why I persist in walking on my more manageable days over the last 3 weeks, I have gone out 7-10 times approx.

Apologies for grammar and spelling errors. All of my others are in the same vein.

Thank you in anticipation
littlenell