MS or Divec's yet NOTHING being done.

New diagnosis and before diagnosis
1

Hello there,

I am writing this on behalf of my partner as his eyesight is less than sound and at the moment he is in a lot of pain. My partner was first taken into hospital in Novemeber. They took brain scans where they founf ‘lesions’ on his brain. All this because his eyesight went to ‘blur’ he had swelling of his optic nerves and couldn’t see at all. They attempted to give him a lumber punch but failed. And then was handed over to a neurologiest to help him.

So far no such luck. Its been months since he’s been back to work because he is constantly either in pain, his hands feel ‘weird’ or he can’t feel them at all (happens to his feet and legs too) his back pain, his eyes go ‘funny’, joint pain, rib pain and more worrying and in the last 4 months. pains through his left side of his jaw. They eye doctor has put him on Prednisolone, Omeprazole and Myfenax but since seeing the neurologist all he did was hand him over to an MS nurse who put him on 900mg of Gabapentin which was taking off the edge up until 3 months ago.

His feet are a disaster area and they were supposed to refer him to a foot doctor (which he has heard nothing back from) They told him to wait until DECEMBER to see the effing neurologiest again and that was back in MAY!

They told us that his condition could be MS or, Divec’s and yet they have done NOTHING to help diagnose AT ALL.

Tonight was horrendous! My partner has been unable to talk at all because the pain through his jaw has been so bad and lasted so long that it is 4am and I am still awake watching over him, worried sick.

It’s so frustrating, I just want him to be okay and for the sake of his health, have the doctor diagnose him already or at least help him with the pain.

I was just wondering if anyone could maybe give me some advice, what he should do next steps or if this is actually medical negligence because he is miserable with this and he’s in constant fear and constant pain and I feel completely powerless to help him.

I mean, do I get him to push for a second opinion? Do I shout at someone and demand they do something? he even applied for PIP (Disability living allowence) but how can he get anything at all when the doctors just don’t give him anything to go on. Possible MS, Maybe Divec’s. I see him stugglee every single day, he can’t even peel a potato due to the shaking and if he cut himself, he hardly feels anything.

I called the hospital tonight and they suggested ‘morphine’. MORPHINE!?! How on earth is that pain management? What, do they just load him on that 24/7? They seem to think that this pain is just temporary. I had to sit and explain this to them as James was in so much pain that he could’t talk at all, let alone move.

Can anyone please help? What can he do? ANything right now would help us greatly with regards to diagnosis or anything to push this forward. At least with a diagnosis, they could treat this correctly and maybe just help him a little with the pain hes constantly in.

Thank you.

Kara. xx

2

Sorry can’t really be much help, but you said that he has a MS nurse allocated to him. So if I was you I would be on the phone or email today to him/her and just start shouting a little louder! Also you could try and get to see his GP today so that a medical person can see the pain he is in. It must be really hard for both of you, take care of yourselves, let us know how you get on. Sue

3

Have a read at this - a link to info about MS pain from the main part of this site. http://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/pain/treatment-and-management.

You will see on there a reference to trigeminal neuralgia (TN) and a link through to what it is - a very nasty kind of face pain that can afflict people with MS, and it talks about the kind of drugs that help with it. If you and your partner think that the facial pain might just possibly be TN, you might consider checking that the GP has considered and excluded TN as a possibility. Because if it is TN, normal painkillers won’t be doing much for it, however strong they are.

I am absolutely no kind of expert, by the way, and this suggestion is the kind of arm-chair expert shot in the dark that i usually deplore. But it’s the question I would be asking in your shoes, even though I generally think it is a bad idea to tell doctors how to do their jobs, because (1) they don’t like it and (2) they generally are doing their jobs and I have just got the wrong end of the stick again.

I am sorry that you are having such a rough time.

Alison

4

Sorry to hear your partner and yourself are going through this difficulty right now.

I started on 300 mg Gabapentin per day which was eventually upped to 2,400 mg per day plus amitriptyline 20 mg at night for the pain.

A visit to your GP is in order - explain that 900 mg Gabapentin is no longer keeping the pain controlled - he/she will be able to prescribe a higher dose and/or other drug(s) to help control the pain. Also, as suggested - get on to James’ MS Nurse/Neuro’s office.

5

Hi Kara, I have ms and trigeminal nueralgia, the jaw pain sounds like trigeminal nueralgia. It is agony.900 mgs of gab is a low dose I am allowed go up to 3600 daily if pain is bad. I have morphine for when the pain becomes too much and take it occasionally it helps break the pain cycle. I also take solphodal which has codeine in it. His pain is not being controlled at all. Why not consider taking the morphine if just to give his body a break from the pain for a couple of days. I would then go with him to his gp and start shouting, he should not be left suffering like this it is inhuman.

kara he is lucky to have a partner who cares so much and tries to help. Let us know how you get on.

Ann x