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husbands results are back

Hello i havent been on for a wile waiting to let you know results,Husband had back in september 2012 mri of brain after many years of having uveitis and sudden loss of central vision in both eyes and many other unexplained symptoms.MRI showed many white spots going through the brain we have only just been told he has had previous scars /lesions to his brain and many areas are affected .Also his lumber puncture showed abnormal results and radiographer spotted lesions on his spine also.The visual field test showed my husbands vision is extremely low.Not that we didnt already know this but neurologist thinks it extremely bad uveitis chronic that has caused vision loss.Neurologist hasnt told him what type of ms he has but said he has no dout he has multiple sclerosis and has had it for years.He said he is thinking it is inactive at the moment but damage has been done.He has left it to the immunologist to help surpress his immune system and hopefully try to save remaining vision and help his ms. xxx julie

billy no mates lol julie

Hi Julie… sorry you didn’t get reply sooner hon. I think we are all struggling with heat and I’ve been trying to catch up on replies.

NO darling you are not a billy no mates! (maybe billy-has-hot-and-tired-mates!)

Well I know this is the result you expected but it still comes as a shock. I hope they can do something to help your husband’s vision.

If they are trying to supress his immune system, they are certainly not sure at this stage that it’s PPMS (I seem to remember you were worried about that… sorry no bloody memory). Immune suppressants do NOT work with PPMS (for some strange reason that I don’t understand) so they are thinking it’s possible RRMS.

All you can do now and wait and see if the drugs work.

You and your husband are on an emotional rollercoaster right now I’m sure… getting a dx is always such a mixure of feelings, fear, guilt. relief, and about a million others. Try to roll with the emotions.

Is your husband able to work? If not, are you getting the right benefits? Let me know if you want to be pointed in the right direction for benefit advice. He should be getting ESA and DLA (or the new PIP)… and he can claim DLA even if he is still able to work.

I assume he’s not driving with bad vision… but if he has a license you need to inform DVLA.

If you have any critical illness cover you can put in a claim now.

Sorry… boring paperwork stuff when you are dealing with this, but has to be done.

All the best Julie to you and your husband.

Pat x (Billy-I’m-your-mate LOL…)

Hi Julie

Well, at least you have some answers now. It’s been a long, hard time for you and your husband and I would imagine you have some very mixed feelings now. No-one wants a diagnosis of MS but at least now you know what it is he can receive the right medication and you can gain access to an MS nurse, physio and/or OT if you feel it would help.

When you do see an MS nurse, discuss with her all the things that hubby struggles with and she should refer you to the right place to get help with these things. Having a name for the illness makes it easier to access all the services that can help and as Pat says you should be able to apply for benefits as well to make life a bit easier.

Hopefully, your husband will see some improvement with the medication. I wish you both good luck, keep us posted

Take care

Tracey x

thanks pat and tracey hubby still working at momment he is finding it hard his vision is dropping and with all other problems i dont know for how for much longer , He did reduce his hours to 5 per day currently works 10am-3pm.I am watching our 2 kids they are driving me mad lounge looks like a tipp lol.Made a den in lounge out off 2 chairs cushions and throw lol.Oh what it was like to be a child no worrys!.Hubby was worried he had cancer, his brother goef died aged 24 with leukemia and i think it was on his mind as he told me he didnt want to hear the results.xxx julie

The diagnosis is a shock Julie but now you finally know that it is MS for sure, hopefully he will get appropriate help! I hope family and friends are giving you both lots of support. I hope the meds will help him and that your lives become more bearable. Stay in touch and take it a day at a time. Teresa xx

I am very sorry to hear that. But now you know it’s MS and not that big letter C ( cancer ) I have lost a very good friend to cancer so I should know at least I am still here x

Sorry! That was for Julie.

Does anyone know how to get an icon? Ta x

Hi Rahma E

You have to find a picture you like and save it to your computer. Then go to your Homepage, then update account, then make sure you click the tabs for Edit and Profile. You will see a space to add an avatar (what you call an icon). This will add a picture next to your user name. I seem to remember it tells you the recommended size and format of your chosen picture (I think I used a jpeg).

You click on this and browse to add the picture from the folder on your computer. It’s a bit like adding pictures on Facebook or similar social media sites. Hopefully this makes sense to you? If not, ask some more questions on a new thread and hopefully one of the Moderators or a techno savvy person will come along and offer some better advice. I’m better at doing thesethings than explaining them!

Tracey

yesterday hubby told me on the way home on the bus he had a really bad tremor arm and hand, right side only .He said people were staring at him yet nobody bothered to ask him if he was ok.As people got of bus they walked past him sitting on front seat staring at him like a freak.I said to him its discusting for all they knew he could of been having a stroke.I think because he carries the white cane people take it he is completely blind.But we know its just his central vision in both eyes,even though remaining vision is not that good.He wants to get re registered he said he will ask the opthalmologist if he qualifys for severly sight inpaired/blind.As even neurologist when looked at visual field test results said his vision is extremely low and uveitis is chronic. xxx julie

Thanks to everyone who has relied i have read everyones messages xxx julie

Hi Julie, I’m sorry you and your husband are having to deal with this. His chronic uveitis should have been picked up and treated long before now. As both of his eyes are affected he should be able to register as partially sighted. He could also claim some benefits. This RNIB site gives lots of useful info. I don’t know why but my tab bar and copy and paste aren’t working on this site. If you type in registering as partially sighted the RNIB site should come up. Jacqui xx

It’s so sad, that the attitude of people is so bad. You think even the bus driver should have asked as he is responsible for his passengers.

I know its like people have lost compassion with each other .Noboby has the time of day to help another person if something happerned to them they would understand what most people are like.Its so sad how thing are now, hubby is registered as partially sighted but his vision has dropped that low that now he is thinking of getting re registered as severly sight inpaired/blind.xxx thank you for all your messages everyone xx julie

Its a sad world we live in when someone obviously in need is ignored. I was sitting in the waiting area in a london hospital when a porter arrived with an lady in a wheelchair. He more or less tipped her out of the wheelchair onto one of the waiting area chairs and left. After a few minutes this lady started to cry. Everyone ignored her. I walked across and sat with her. She had recently had a stroke and needed to go to the toilet. Everyone seemed too busy so took her arm and walked very slowly with her. She needed assistance in the toilet and I felt so sorry that I, a complete stranger, had to do this for her. Staff came looking for me as it was my allotted appointment time. Did someone take over from me, no. I told them I would be with them once I had sorted out their patient. I was mortified that this lack of care was going on in a hospital.

Julie, I do hope someone soon does something to restore your faith in the human race.

dinks you brought tears to my eyes you sound like a lovely person ,My husband said to me if i was on the bus and someone needed help he knew i would of offered to help too.People can be so cruel and unfeeling sometimes i come over as a toughy but if anyone needed help and i was around i would help them.Wish there were more people like you xxx julie

You are very kind Julie but really I am no different from most of the population. It’s just some are frightened to help for whatever reason. I come across, or so I have been told, as waspish and unapproachable. I admit I do not suffer fools easily but hope to think I would never turn from someone needing help. The OH and I fostered for many years until it became too much for us. Some of the kids still keep in touch so I can’t have been that unapproachable! There are still many more good people than indifferent ones out there. Perhaps someone could start a thread reciting some good deeds just to cheer us all up. Perhaps we need a national compassion day to show care for the community is not dead.

A NATIONAL COMPASSION DAY SOUNDS LIKE A GREAT IDEA DINKS.Fostering children must be a challange but also very rewarding i take my hat off to you.xxx julie

Hubby sat on bus otherday and a lady started taking to him she started talking about someone she knows who has several brain tumors and has been told he cannot claim benefits as he is fit for work and he can get training so they claim ,he only gets low end dla .Its so unfair who is going to train a man up for work when they havent got long left it really upset me wish hubby wouldnt tell me stuff sometimes.xxx julie