Hi all not been on for a while! Received a phone call from GP asking me to go in to discuss a letter from neuro. The letter is diagnosing MS. That’s basically it a one line letter! I am feeling all over the shop but mostly angry at neuro for not seeing me himself as I have LOADS of questions that my GP couldn’t answer. Called his sec an she was useless as wound book me am app coz there “busy” at the min!!! Am I wrong to want to be seen ASAP!!! Spoke to GP about being referred elsewhere but would then fall to bottom of waiting list! Help guys??? Steph x
I cant really help but you can use me as a punch bag because you have every reason to be livid.
Pip
Oh that’s really unacceptable. I have asked to be re referred as a result of a less than helpful neuro but don’t know how long this will take. In the meantime, I was referred to an ms nurse, who I have found to be the most beneficial healthcare provider that I have seen. I would suggest you do the same. They certainly have a wealth of knowledge, expertise and direct experience in the field.
Thanks both of u! I just can’t believe I have been told this (officially) and now left on my own to deal with it! I have a fantastic husband but he just doesn’t seem to want to talk about it. I understand he is probably as worried as I am but I need answers and advise!!! Steph
Are there any questions that we could help you with?
I have just come back from a gp appt and following my positive ms nurse feedback on BG12 I asked him when he thought it would be available. He admitted he didnt know about my copaxone never mind one that wasnt even licenced.
So I can understand yours not knowing anything you asked. At the end of the day it shouldn’t of been him breaking the news either.
Did the letter mention an ms nurse or could you find the number for your local one and contact her yourself.At least that way you will get the answers you need,and will find out if DMDs are applicable. She/he may also be able to get you a neuro appt more quickly if she can’t answer all your questions.
I know you wont be thinking rationally now but in the near future don’t forget the housekeeping of informing DVLA, insurance and check you policies for critical health as you can claim on that.
Take care and be kind to yourself.
Pip
Thanks very much. The DVLA know phoned today! Yeah I think I might contact the MS nurse. GP also said she would chase for an app! I was given the numbers a while ago as a “just Incase”. Thanks Thanks for ur help. Just nice to know there are people out there who understand! Is there anyway of finding out if there are any local support groups? Thanks steph
There is a thing you can go onto on the main ms society page and you zoom in on where you live to find all the services in your area.
Pip
That is diabolical! No wonder you’re angry 
For what it’s worth, MS nurses are often much more helpful than neuros so do try and contact yours.
As far as local support groups go, you can look on here for your local MSS branch. Other than that it’s probably going to be a lot of googling. Some groups put leaflets in GP surgeries and libraries though - might be worth a look. And, of course, you can always ask on Everyday Living.
Give your husband some time - it’s a shock for everyone and we all come to terms with it at different rates and in different ways.
Give yourself time too - getting your head around a diagnosis isn’t easy, even when it was expected.
Karen x
Sometimes it’s harder for the carer watching powerless to help. Not only is my husband dealing with all this but his daughter is undergoing a double mastectomy today as a preventative measure having inherited his BRCA2 cancer gene. My gp has mentioned to my husband that counselling is available for him too, as my carer should he feel the need to off load to someone…it might help. Catherine
Hi, Steph
I’m waiting for the letter to arrive,I think I’m 2 wks into a relapse at the mo. I phoned the neuro’s secretary yesterday. She said neuro would sign the letter today, (results from MRI scan of head and C spine) and send copy to my home and GP. I know she can’t tell me anything over the phone, but I asked if I needed to be seen before xmas as my original appointment was cancelled (11 Dec) and changed to 29 Jan but she said no. I still need to attend the appointmewnt in Jan, just don’t know what to think?.
Everything is just spinning, in one sense I think well it can’t be that bad or the neuro would see me asap, but now I’ve read your experience, Steph, I just don’t know what to think. I’m going to be at home waiting for the mail, wondering if I should open it or not.
I may be on here, looking for some technical advice from Karen (rizzo, the MRI expert), to try and make some sense of it.
I know how you feel, Steph, I think it’s really inconsiderate to be left dangling and for a local doctor who is not versed in the problems and drug etc for MS, to deal with your questions. Although I understand the NHS is at breaking point, to receive a dx in person is obviously not that important to them. My neuro has cancelled almost 50%, of his outpatients appointments recently?. Take care, Jo.
Oh Cath, what a worry for you and hubby re his daughter`s op.
My thoughts are with you all.
luv Pollx
Hi, it just aint on that your neuro let a letter do his work for him. Even after years of testing, actually being told you do have MS,… it`s a shock!
cop out it was it is!
Hope MS nurse can see you soon to explain things.
luv Pollx
Thanks to you all. I am going to ring the MS nurse. We (me and hubby) have had this dx unofficially since jan this yr so have “come to terms” with it as much as possible. Thanks again to u all and I wish u all well Steph x
That is dreadful - he owes you the courtesy of telling you himself. You have a perfect right to feel angry. Sorry for your dx - things will get easier with time. Take things slowly and lean on your friends and family for support. Your husband is probably in denial over your dx. He doesn’t want anything to be wrong with you which is understandable! He will come round when he has had some time. Time is the key for you both! I hope you manage to get any meds you need and the support you need. Remember we are always here when you need to vent or rant and rave. Teresa xx
Sorry to hear of your dx and im sure your oh will come around soon. Ive always told my wife that if i ever get MS that she should go maybe thats wrong but i seen what it does to marriages having grown up watching my father fade away into a shell of his former self and in the end a very silent one at that until his death, but ive always said too that he gave up fighting it, if you have the fight you will remain as able bodied as you possibly can and indeed it affects everyone differently. But first and foremost YOU need support of those nearest to YOU, without that you cannot fight yourself!!!
Best of luck!!!
Thanks all. I have MANY phone calls today with the MS nurses and have managed to get an app at 10am tomorrow wooooo. So I am compiling a list of questions as we speak. Yeah I no he will need time. We all will I guess. Thanks again Steph x
Hope your meeting has gone well and you have got some answers.
Pip
Hello. Meeting went okay but I came out feeling worse than I have ever felt! It’s RRMS. Had to have blood tests so I can start on drug therapy ASAP! Not sure how I feel about that. Have read the info given to me on the drugs available. Came home and while my daughter (2yr old) was asleep me and my hubby both cried and cried for about an hour! I had to go out this aft just to stop the tears coming. Got a lot to think about now! Steph
Please go onto the msdecisions website.
Set aside some time so you can really go through it and it will explain in easy to read language all the different meds that you have to chose from.
At the end there is a tool you can work through to help you decide which you think is the right option for you. Think carefully and realistically what is important to you as you make your choices. It then works out which you feel is the best option for you. you can tweak it as many times as you like.
It helps to go to the next meeting with the nurse with knowledge of what is out there and the consequences of them all.
I knew very quickly that copaxone was the one for me so it speeded up the process.
Looking at what you have on offer to tame your MonSter will help you feel that you are fighting back and make you feel a bit more positive in moving forwards.
One thing I didn’t know was it took a long time from being told I could have DMDs to actually starting them.
If they are talking Tysabri straight off then you really will be doing all you can to help your body.
Take care and be kind to yourself.
Pip