Forum Replies Created
May 13, 2020 at 1:51 am #187743Reply To: How does everyone else do it?
You should definitely apply for PIP. It will allow you to put support in place without you being out of pocket and means you want be as exhausted doing housework.
Your health care team I’m sure would be happy to support your application.
When completing the form base on your worse day ever with the condition!
I have DLA as not changed over yet and use it to have someone do my ironing and for transport costs mainly.
Good luckOctober 27, 2015 at 10:55 pm #96763Re: Fatigue/excessive sleepiness
Can I suggest you ask for a sleep breathing assessment. Muscle conditions can also affect your lungs or muscles around them such as the diaphragm. Symptoms can include daytime sleepiness, waking up un-refreshed from sleep, morning headaches, hungover feeling to name a few. Ask GP for referral to Respiratory and if already seen there mention symptoms. If you think it will he,p you could all take a copy of an Epworth score….you will find it on google.
Good luckAugust 4, 2015 at 7:12 pm #96733Re: Changing vent settings & when
Did an epworth scale myself online and my score has gone up. Don’t have Tosca result yet but should know this week. On this occasion I think it’s me and not the machine. Last time it was machine and I kept telling them to no avail this time around I have a different doc who I get on well with and I believe will listen to me. Don’t tell myself just now. Waking less then refreshed in am, morning headaches, daytime sleepiness and falling asleep inappropriately. Machine in the same place it’s always been.
Fingers crossed it’s sorted quick as I’m due surgery and my vent settings need to be optimalJuly 29, 2015 at 10:42 pm #96586Re: Newcastle referral
Any developments on going to Newcastle? Well worth a visit compared to seeing a general Neuro. Go with an open mind and a list of all your symptoms. I got referred in 2012 and touch base with centre when ever I feel it necessary and they have been great.they can do tests not offered elsewhere. Good luckDecember 23, 2014 at 12:05 am #94905Re: Recovery after general anaesthesia for key hole surgery
Glad I saw this message. Can either of you two ladies tell me about your anaesthetic and your fitness for it.
I’m needing keyhole surgery under a general anaesthetic which they now wont do as I use BIPAP. The surgeon and anaesthetist feel I shouldnt have it despite saying it was ok. I had to have a spinal anaesthetist earlier in the year for the same reason but was told this would be a general. I’m very upset to be declined op as I’m in pain. Both Neuro and respiratory team feel I’m fit fit procedure and are happy to be involved.
Do I have rights to appeal decision or have others been in same/similar situation
Thanks in advance
GillSeptember 24, 2014 at 10:18 pm #94612Re: Hot Foot…….???…..
How is the pins & needles now? I’ve noticed increasing problems with this over the last 18 months and keep telling myself it’s just my imagination but now I’m convinced it’s not. I’m presuming it is connected to the MD. Made a decision to discuss it at my next Neuro appointment.
I also wondered whether others had experienced this problem and what did the explanation turn out to be.
Thanks in advance
GillSeptember 24, 2014 at 9:02 pm #94758Re: LOSING WEIGHT !!!
Glad to hear I’m not the only one who gained weight on Pregabalin. I’m loathe to stop as the muscle pain will come back & my mobility will deteriorate. How are finding your symptoms off it, if u don’t mind me asking.
I’m trying to lose weight through walking and calorie restriction.
I also have polycystic ovaries but didn’t find I gained lots of weight with it although weight gain can cause it.
Hope you are well.
GillApril 14, 2014 at 10:50 pm #94170Re: GP Shock Horror……
If only we could clone good doctors. IM lucky to have an excellent GP who admits to knowing nothing about MD, she largely lets me manage myself and does what I ask. It’s on the system if I phone that she will either see me, phone me or I can get quick appointment with one of the others if she is not around.
It’s about time they realised we are the experts in our condition as we live with it day in day out.April 14, 2014 at 10:44 pm #94056Re: Nerve pain
Nerve pain could still be MD related as if they are all linked up. My neuro always asks me about pain and asks me to specific where i.e. is it in nerve, muscle or both.
Keep pressing for the referral to Newcastle.April 14, 2014 at 10:37 pm #94201Re: GO TEAM ORANGE
Well done to all Team Orange who ran the marathon. A colleague of mine did it in a respectable 4 hrs 20 and raised £4500 in the process with donations still coming in.
I’m not fit to do that sort of stuff so I’ve signed up to do some bucket collections over the summer.
Will we find out how much team Orange runners raise in total for the marathon?
GillApril 14, 2014 at 10:30 pm #93171Re: You Should Have Patient Held Records….says our CEO..
Sarah I’m glad you have managed to get each care provider communicating. Its relevant to me too as I’m due to give surgery later in the year and obviously as I have more issues now it’s taking some planning. I insisted that all my consultants be copied in on the correspondence and that I be too and I have liaised with each of them to provide advice on how I should be managed in hospital and any special concerns noted. They probably think I’m bring difficult but I don’t care I want to feel safe & for my procedure to go smoothly.
Sash did you ever get an appointment sorted?
Taungfox apologies I haven’t yet posted the link to obtain access to medical records & patients rights. I will post these from work tomorrow.April 14, 2014 at 10:22 pm #94032Re: DING DONG IS ATOS REALLY GONE
Gosh Woogy that’s shocking but not surprising. In my area they are constantly advertising for PIP assessors. I did consider applying but that salary wasn’t great….lol Thanks for sharingApril 14, 2014 at 10:17 pm #94089Re: transplants
If only our dodgy muscles could be transplanted. I have a no of friends who have had transplants and I must admit I did a feel happy for them but was also a bit jealous as they were getting better. I know that’s wrong. Hopefully with all the research thsts being done there will be more help for us soon.February 2, 2014 at 9:57 pm #93399Re: Target MD magazine – special feature on Scotland
Thanks for a fab bumper edition of the Target newsletter. I live in Scotland so it was people I know who featured so much more exciting:-)