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TOPIC: DLA & ESA Appeals tomorrow.....

Re:DLA & ESA Appeals tomorrow..... 8 years 10 months ago #42991

  • John
Thanks Kathy an dFedup....fingers crossed and i will let you knwo how iget on.


Dave it is a bummer of a disease I know that.

My wife has been off work since last march and actually finished on medical grounds in september. Forrestier's is the diagnosis, it is calcification of the bones and looks on an xray / mri scan like dripping wax.

She has about 5 bones / discs whatevr they are called fused together in her throracic area and is in agony most fo the time. There is a lot of family histry os arthritis, relaced hips, replaced knees, osteoporosis etc but she seems to be the first with disease. This together with really bad sciatica has forced her to stop work.

Problem is there is so little known about forrestier's disease. DWP rejected any help using details from medicla services dr and hospital consultant. When he diagnosed it he told us to look on the internet for info as there was little known about it.

It is typically a disease of an old man who smoked an dhad gout according to the averages and is associated with "little pain" she was sucking 11 gabapentin 300mg per day and not even touching the pain. For 3 weeks she did not get out of bed but what is one to do if there is no info to go on???? Her gp is helpful and will write a letter to the DWP but ultimately each road I go down seems to come up with the answer of no or little associated pain. It feels like someone has punched her in the chest / back and just left their fist there.

I would loe anyone who knew a little about it to point in any direction for help online or wherever.

Over to you Dave......a mind of knowledge hopefullu you may know more...

Thanks

John

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Re:DLA & ESA Appeals tomorrow..... 8 years 10 months ago #42995

  • originaldave
John wrote:

Thanks Kathy an dFedup....fingers crossed and i will let you knwo how iget on.


Dave it is a bummer of a disease I know that.

My wife has been off work since last march and actually finished on medical grounds in september. Forrestier's is the diagnosis, it is calcification of the bones and looks on an xray / mri scan like dripping wax.

She has about 5 bones / discs whatevr they are called fused together in her throracic area and is in agony most fo the time. There is a lot of family histry os arthritis, relaced hips, replaced knees, osteoporosis etc but she seems to be the first with disease. This together with really bad sciatica has forced her to stop work.

Problem is there is so little known about forrestier's disease. DWP rejected any help using details from medicla services dr and hospital consultant. When he diagnosed it he told us to look on the internet for info as there was little known about it.

It is typically a disease of an old man who smoked an dhad gout according to the averages and is associated with "little pain" she was sucking 11 gabapentin 300mg per day and not even touching the pain. For 3 weeks she did not get out of bed but what is one to do if there is no info to go on???? Her gp is helpful and will write a letter to the DWP but ultimately each road I go down seems to come up with the answer of no or little associated pain. It feels like someone has punched her in the chest / back and just left their fist there.

I would loe anyone who knew a little about it to point in any direction for help online or wherever.

Over to you Dave......a mind of knowledge hopefullu you may know more...

Thanks

John



yes like wax or liquid calcification ? you need to find the name of the dr who gives advive on this subject to the dwp you talk of osteoporosis in the family there can be no connection IMO because thats thinning of the bones where as this is the sort of build up you get around a break when it mends ... with this much extra bone matter in the system has she had her kidneys scanned ? or been told to drink extra liquids ?

if she applied for DLA and they wrote to her dr these are the questions they would ask

Which joints affected?
Severity of affected joints?
Any deformity?
Any other clinical findings?
Exacerbations and flare ups / how often & how bad?

;)

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Re:DLA & ESA Appeals tomorrow..... 8 years 10 months ago #42998

  • kriss
Hi John

Hope you get some sleep tonight & Good Luck for 2morrow

Kriss

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Re:DLA & ESA Appeals tomorrow..... 8 years 10 months ago #42999

  • Magic
Please accept this virtual hug and a kilo of confidence and tenacity. Bring it on!

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Re:DLA & ESA Appeals tomorrow..... 8 years 10 months ago #43001

  • John
I may come back to you with some questions about this next week Dave if i may.

I am still writing my diary at the moment so going to concentrate on that and tomorrow now instead of going off on one but thank you for your input it is appreciated.

Thanks Kriss, my appeal is late tomrorow at 2.45pm so I will post my outcome here on monday.

Good luck all.

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