Hi another symptom my husband said happerned twice yesterday his legs just stopped working and fell down on knees.Its like his legs forgot to move, it gets stranger.
Hi Julie,
That sounds awful can he go back to GP/Consultant and have his appointment earlier than July as it sounds as if he needs to get diagnoised quickly so he can start some sort of medication and the stress of not knowing can’t be helping either of you.
Take care
Helen xxx
Hi helen he has appointment in july said it would take until then for all test results to come back as he wants to test for devics as well as some other rare brain & spine disorders.Hubby also started to have problems with his hands too, trouble being he struggles to use both hands at the same time and keeps dropping things. 7wks until neuro appointment carnt come quick enough,hopefully get some answers with all tests done.xxx julie
Hi Julie,
I agree with Helen - this all seems awfully slow, still.
I know the tests etc. take as long as they take, but can’t he get any practical help in the meantime - physio, nutritionist, occupational therapist, or whatever?
He shouldn’t strictly need to be diagnosed, to access any of these things. It should be enough that he’s having the problem. Why is the GP happy for everything to be left another two months? It’s been dragging on months already.
I know an MS diagnosis (or whatever else it may be) is NOT simple or straightforward (been there). But it shouldn’t mean he can’t get any help until the lab results come back. Support with symptoms should be available, even if the underlying cause remains unclear.
I’m feeling angry on your behalf! MS itself isn’t generally considered a medical emergency, which is why the tests aren’t usually pushed through as urgent. But wasting away, with nothing being done about it, and falling over without receiving any help to avoid it ARE urgent, and shouldn’t all hinge on waiting for the results first. I’m wondering if you need a more proactive GP, because it all seems very laissez-faire. Do you like/have faith in the one you’ve already got? If it’s a multi-partner practice, is there a chance you could see one of the others, just once, to see if they are a bit more proactive?
The current one seems content to wait until there’s a crisis, before doing anything. Or is it just that your husband (or you, on his behalf) still haven’t disclosed the true extent of the problem? Does the GP even know this stuff is happening?
Tina
x
I am getting more frustrated as time goes on developing more symptoms as time goes on now struggles to speak kids speak better than husband.He now talks like elma fudd condition rhotacism with apraxia.List of symptoms are so long take about an hour to tell neurologist when see him mid july for hubbys diagnosis.Had lumber puncture, eeg, blood tests for devics, mri spine, field test of vision,with symptoms and mri brain showing lesions on brain must get answers surely.xx julie
Hi Julie, I can’t believe that nobody is telling you anything. Some of the results must be available [understand some take longer than others] is there nobody you can call like the consultants secretary. It is morally wrong to make both of you wait and worry like this especially as his condition is deteriorating. I feel frustrated for you both myself. Have you got somebody to support you as you need someone to lean on and rant at.
Hope things get better soon
Helen x
I feel like i am going mad had a good cry,I dont really have anyone but family, mums not very sympathetic.Have had worry with eldest daughter 7 rs old having constant urine infections because school not letting them drink wile in class and not putting drinks out at break time.Just so that they wont go toilet in lesson time,had a rant at headteacher telling him my daughter must not be restricted from her drink bottle at anytime.Otherwise she will always be having bladder infections.Worry worry more worry i will have a nervous breakdown thats not going to help anyone.5wks approx till hubbys neurologist appointment,He is a shadow of his former self just hope we get some answers.Helped him with dla form for change in circumstances that was waste of time didnt help at all giving him same as before only low end of both.Said they wanted him to fill out another form before december 2013 to see if he needs more help or less.Its a joke and an insult, xx julie
Julie,
I know I’m repeating myself here, but even if you don’t get answers in July, that should NOT be an obstacle to accessing practical help. You don’t need a diagnosis, you just need to be having the problem!
I suggest you get CAB or somebody to have a look at the DLA claim, and whether it’s worth appealing, because if everything is as you’ve described, I don’t see how it can possibly come out lower rate everything, but you need help to describe it in the right way.
Also, if Hubby has not been completely frank with the GP about just how bad things are, or he’s still resisting seeing the GP, that might account for why he’s only got a low award. Your claim needs to be supported by medical evidence, and if he’s resisting going to the GP and making sure it’s all on record, you won’t have any evidence to present. Your description isn’t enough - it needs to be backed-up by a professional who’s actually examined him. Not providing evidence is the single biggest reason claims fail, or come out lower than expected.
Lots of people only present evidence on appeal. It needs to be there from the start. DWP won’t write to doctors to chase evidence the claimant didn’t provide.
Tina
x
Hi Julie, wish you lived near by as I would come round and take you for a coffee so you could rant at me.
Hope your rant at the school was successful as not allowing them drinks is unacceptable!!! I know you don’t need me to tell you this but you need to have sometime to yourself as you must feel that you are hitting a brick wall at every turn. I know that you feel that nothing is going to get better right now, but it will. Watching someone you love becoming ‘a shadow of their former self’ is awful but you need to be kind to yourself and remember the load you are carrying is massive and you are just one person. Can you get a carer to help out to give you a break and would your mum not help with the children even if not the most sympathetic person?? I hope this doesn’t come across as patronising as that is not my intention, just makes me sad that you are struggling with all of this.
Luv Helen x
Hi Julie my last post on here appears to be lost in cyber space so aplogies if you get it twice. So worried for you as you have so much to bear. Could your mum not look after the children [even if not the most sympathetic, mine neither] so you could have some relax time, remember you have to be kind to yourself as well.
If you were local I would come round and take you for coffee so you could have a good old rant at me. So if you feel like doing that on line you are more than welcome my email address is perditaf@hotmail.co.uk
Take care
Helen x
Thanks helen xx its a shame you dont live nearer i would like that most of my mates have gone there seperate ways i feel like billy no mates lol.Is cheshire he place with crooked church steeple?Nice place.xxx julie
[quote=“Anitra”] Hi tina i did give them two neurologist and opthalmologists under on dla form told them that he doesnt see gp about it dr lawden at leicester royal said that he was fairly sure the lesions found on brain with other syptoms were caused by ms but couldnt diagnose there and then because up to other neurologist to make diagnosis which what we still waiting for with all results of tests. And also under opthalmologist at leicester royal for loss of vision registered with vista for vision loss,So we dont understand why he has low end its all a very unfair system.
Julie,
I know I’m repeating myself here, but even if you don’t get answers in July, that should NOT be an obstacle to accessing practical help. You don’t need a diagnosis, you just need to be having the problem!
I suggest you get CAB or somebody to have a look at the DLA claim, and whether it’s worth appealing, because if everything is as you’ve described, I don’t see how it can possibly come out lower rate everything, but you need help to describe it in the right way.
Also, if Hubby has not been completely frank with the GP about just how bad things are, or he’s still resisting seeing the GP, that might account for why he’s only got a low award. Your claim needs to be supported by medical evidence, and if he’s resisting going to the GP and making sure it’s all on record, you won’t have any evidence to present. Your description isn’t enough - it needs to be backed-up by a professional who’s actually examined him. Not providing evidence is the single biggest reason claims fail, or come out lower than expected.
Lots of people only present evidence on appeal. It needs to be there from the start. DWP won’t write to doctors to chase evidence the claimant didn’t provide.
Tina
x
[/quote]
Neurologist at royal & general have all husbands information and images of brain lesions we do not hold any details they have it all on file.Appart from husbands registation letter from opthalmologist with local vision loss charity vista we do not hold any information .Hospital has it all so if they do not bother get in touch with hospitals we have nothing to show them.We are nhs not private and there fore we do not get any medical files you have to pay for files and hospital records.
Julie,
Yes, you do have to pay for copies - but they’re not allowed to charge very much. As far as I know, the DWP will NOT contact consultants on their own initiative, even if you provide the names. It’s up to you to provide as much evidence as you can with your application - they won’t go and find it for you. I’m not sure they could anyway. If a consultant is going to divulge a patient’s confidential medical information, it would have to be on a request from the patient, not the DWP. Unless the application form expressly says that you grant permission to the consultant to release the records, I can’t see how they’d be allowed to. They can’t just hand them out to anyone who gets in touch, claiming to be from the DWP, can they?
Tina
I think on the form there was abit that asked the permission of husband to contact the consultants and ticked and signed it was ok In the form.We believe if my husband wasnt working 5hrs 5days per week and wasnt fighting against his own body pushing himself to walk despite all his pain and fatigue and other symptoms they would probibly take him more seriously.We believe because he is still trying to continue to work they dont take his condition seriously.And that is why he got low end when we see consultant i will ask him how much for images and report of condition.Gp charge £70 for a letter when a work place contacts them we were told by doctor at surgery this was when he started to be ill 2 yrs ago with sightloss weight loss and tierdness before we knew of brain lesions .