Shoulder pain

[2georgepheobe]

Hi hope everyone is as well as they can be. I wrote a while a Go about pain in my shoulder well I have had MRI and shown all the mechanics in my back have basically had it I am waiting to see a spinal surgeon now see if he can screw me back together again or not!!My spinal cord is in tact so that's good, what else can be thrown at me? Saw my neurologist last week and she wants to put a PEG in as a precaution she said that really has worried me I was only diagnosed in January anyone else had to have one so early​ really has fritend me .

[Yanno]

Hello Pauline - so sorry to hear about your shoulder, hopefully your surgeon will sort things out.

I think the decision about the PEG is a very personal one but I have written elsewhere about Jackie's choice to have a PEG fitted very early on. For us, after an early scare when Jax went off food and lost almost a stone in weight, it is a safeguard against possible bad times ahead when feeding may be difficult otherwise.

Since fitting the PEG, other than an infection that was a real nuisance, the PEG has been easy to manage and has been an easy way for Jax to increase her fluid intake. From an early age Jackie did not like taking sufficient drinks and is prone to being dehydrated.

I can't remember if you are in the UK but Nutricia who provide support for PEG users on behalf of the NHS are very good and "hold your hand" all the way. I know for some a PEG is a scary prospect but we have been helped to see that this is just a means to an end.

Feel free to reply if you have questions we can help with,

Take care, Ian

[Diane831]

Hi Pauline. Sorry to hear about your spinal problems. Geoff is considering a PEG as he is taking so long to eat and drink. The dietitian came to see us and suggested that we look at a website called 'My Tube MND' which have lots of videos about all aspects of having a PEG tube. It might help you. We felt more informed after looking at it. They do seem to suggest that you get a tube placed while you are well enough. We are seeing the dietitian again next week to think some more.

Diane

[FredaE in reply to Diane831]

I don't know if it is right to have a peg fitted as soon as possible but I do know it is always wrong to leave it too late if that makes sense. If you are not well enough to be able to have it fitted when you are having trouble with swallowing and aspiration pneumonia you do not have many options

Freda

[2georgepheobe in reply to Diane831]

I think I will have the peg fitted. I have asthma only mild but do get pneumonia quite easy,so I think it's wise. I have watched the video you told me about interesting helped me decide so thanks for that.my doctor has changed all my medication to liquid so that's easier for now so thanks again

Pauline

[2georgepheobe in reply to Diane831]

Hi Diane I have decided to have the peg fitted, I have watched the video you told me about interesting it helped me decide, My doctor has changed all my medication to liquid so that's easier for now.So now it's waiting again for it doing I am struggling so much at the moment with moving about walking they are wanting me to have carers coming in but I don't want strangers,a friend help's me she was a nurse but I want to pay her and don't no how to go about getting more benefits I keep trying but it's so difficult anyway thanks for your help let you no when it's fitted.

Pauline

[Yanno in reply to 2georgepheobe]

Hello Pauline

You should be getting enhanced PIP benefits and your friend could be receiving carer's allowance providing she doesn't receive a state pension. Jax and I found our local Age Uk to be excellent with their advice on benefits. One needs to understand the 'points system' and how you relate to each of the areas. The Age UK advisor has all this information to hand. They will now assist anyone over the age of 55. ...just a thought!

Take care, Ian

[Hidden]

Hi Pauline, 2 things.

Get a Pneumonia jab. It is a once in a lifetime jab and stops chest infections turning into pneumonia. Distric nurse came and gave Carol hers. She was also told that she had mild Astma most of her life and it turned out to be a weak chest due to the MSA, she now has an nhs "cough assist machine" to clear any phlegm to stop the chest infections.

Shoulder and neck pain can also be part of MSA. It seams to be caused by blood preasure drops taking the blood from around this area in Carol (called coat hanger pain). She did have a scan that reveled that she has severe athritus in her upper spin area, but this was not the cause of the pain, it is the blood preasure drops. I coat her shoulders and neck with voltarol Emjel cream.

Kevin