@jps1980

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jps1980

Not coping well after diagnosis

HI everyone I'm 38 years old and have recently been diagnosed with Ms after having ongoing problems with my vision. It took over 12 months to get my diagnosis and not finding things easy. I'm a father of four and I'm married, I've always had problems with my mental health but have been very low since finding out I've got ms and I'm worried about how my moods and this disease are going to impact everyone. Regards John

Rae87

@Rae87

I had a bit of a breakdown after I was diagnosed. It didn't help that I got the news days before my grandfather's funeral. It's been an absolute rollercoaster. Talk to people, take any support you are offered. Allow yourself time to grieve. It's natural to feel scared, sad and angry. Some days I just want to scream. I suffer with general anxiety disorder and depression. My ms nurse gave me some useful information about managing stress and anxiety so it might be worth seeing if they can point you in the right direction.

Stumbler

@Stumbler

Hi @jps1980 and welcome. The diagnostic process is a trying time and the diagnosis, even if expected, can come as a shock. This kicks off a rollercoaster of emotions. So, give yourself time to get your head around this diagnosis. I can see that you're doing your research, hence finding us. But, do take notice of @robbie_brown 's not to randomly Google around. Stick to reputable websites like the MS Society and MS Trust. The MS Trust actually have a set of publications, so check out the "Newly Diagnosed" link on this webpage :- https://support.mstrust.org.uk/shop MS is an unknown to the majority of people, conjuring up pictures of wheelchairs. However, things have changed and medical science has moved on in leaps and bounds. Whilst a cure has not been found yet, there are various treatments to slow down, and even halt, the progress of this condition. Life generally is unpredictable, so your diagnosis has not altered that fact. So, take your time, live healthily, eat healthily and avoid, or manage, any stress.

Donavan

@Donavan

It could be a case that your ms was the cause for the mental issues to start of with and we throw meds to mental issues not targetting the cause, some people tend to have mental issues from ms before being outerbody affects. Treatment might even help with changing the brain chemistry and you might find a relief from the mental issues as the treatment might reduce the attack on the brain nerves. Perhaps start treatment asap and see if you feel a change....

Vixen

@Vixen

Hello @jps1980,sorry that you’ve found yourself here but at least it’s a good place to go, and everyone here will understand what you are going through. First off, create the most healthy environment for yourself that you can. Rest well, eat well and try not to let stress get the better of you. Stress is our enemy. I think it’s important that you let things unfold however they need to. If you’re feeling down, acknowledge it and work out how to alleviate it. You need to work out what your support network is. Have you been telling people? How is your wife doing? Now you’ve found this site, you should use it as a reliable source of support as often as you need to. Try to use official sites, like MS Society. Try not to overwhelm yourself too much. Focus on recovery and take things slow and easy for now. X

MamaWals

@MamaWals

Getting used to a diagnosis is tough. There’s so much uncertainty and that’s hard to handle when people are depending on you. The good news is you’re not dying and now you know what’s happening so you can take appropriate steps to address it. Knowledge is power. Be kind to yourself as you adjust to the diagnosis. If you feel so low that you’re having trouble doing daily tasks or are thinking about suicide then get help from a mental health professional. Remember, your wife and kids need you there so take care of yourself so you can be there for them. Good luck.

Gary_Bennett_1

@Gary_Bennett_1

i have been having episodes of vertigo this week and today is thursday, the vertigo I am still experiencing.

Stumbler

@Stumbler

@gary_bennett_1 , have you been introduced to your MS Nurse yet? If you have, contact them to discuss this symptom. If you haven't been introduced, have a word with your GP to see if they can offer anything? There's some details about Vertigo, as an MS symptom, here :- https://www.mstrust.org.uk/a-z/dizziness-vertigo

Gary_Bennett_1

@Gary_Bennett_1

yes I did when I fist had it and i was getting double vision, contact my ms nurse then and she contact my my neurologist who then put me on MAVENCLAD as part of my DMT. I am assuming that all this is part of the symptoms that are connected to my ms. I am yet to contact my MS Nurse yet as I had this before. i just keep a note of it for my diary. Tomoorw I am going to see Low in concert. I will go in my wheel chair. I will see how I get on then with that. Thanks for the links you sent me for vertigo. I haven fallen over YET have I.

Stumbler

@Stumbler

@gary_bennett_1 , just be aware that you shouldn't blame everything on MS. We can also suffer from run-of-the-mill stuff too. Sometimes, we should go to our Doctors to eliminate "normal" stuff.........

Gary_Bennett_1

@Gary_Bennett_1

@stumbler thank you i will take that into consideration

potter

@potter

When I was diagnosed I cried for two weeks and then decide to go to battle with this disease. I especially like to find the latest research projects, they give me hope. I just read about a new treatment for optic neuritis. I don't know if it is approved yet where you live, you can ask your neuro about it. Knowledge is power! Potter

cameron

@cameron

You've already taken a positive step - i.e. acknowledging the problem. What @donovan says is interesting - it flips the pyramid. Hopefully, improving your management of the MS will in itself improve your mood. My GP told me that EVERYONE diagnosed with a long-term condition, be it diabetes, epilepsy or MS undergoes a change in their mental state. I know that has been true in my case and that just being aware of this fact made me feel better! I count antidepressants as part of my armoury against the MS. Big hugs, xx

mtvesuvio

@mtvesuvio

@potter what's the new treatment for Optic Neuritis?

potter

@potter

I read about a treatment where you hook up electrodes to your scalp in certain areas and give it low voltage shocks I think from a battery. They were talking about a person in a remote area being able to do it home with the help of Telemed on your computer. I have a friend that has severe depression bipolar. Once a year she has her brain shocked, she is under anesthesia and doesn't feel anything. She can't remember what happened in the last couple months but she no longer wants to kill herself. It is wonderful that Doctors can help people with a little electricity. I hope you can find some more information on the new optic neuritis treatment. Potter

jps1980

@jps1980

Thanks for the welcome sorry I've not been back for a a bit. I've had my first appointment with my ms nurse Alison and will be seeing her again in April it's My neurologist I'd like to see again I last saw him before my lumbar puncture in October and I'm not due to see him again until may. Ive been referred to a neurocycologist and I'm waiting for an appointment with them it was ms nurse that arranged this and also told me about this site.

Rishi_Sen

@Rishi_Sen

Hang in there buddy. We are all with you.

StrictlySoca

@StrictlySoca

I found the neuropsychologist to be one of the most helpful things as It explained and reassuresd just how much was MS and how much was me and or MS stuff. Keep going and taking all the help offers All the best

jps1980

@jps1980

Hi everyone I've been struggling along with a few issues at the moment my mental state being the biggest issue and seeing my neurologist at the start of May hasn't helped turns out he still won't push the boat out and put a diagnosis of ms on me just yet. My neurologist is basically saying it's more than likely ms rather than a monophasic episode and that going of the McDonald criteria I'm one lesion away from being given a diagnosis so he arranged further scans this time adding the tspine to these ones which hasn't been done before, I'm currently awaiting the results of these and my next neurologist and ms nurse appointments aren't until late November now so just feeling back in limbo again.

Vixen

@Vixen

Hello @jps1980, sorry things seem no further forward for you. Could you be referred into the counselling service, to help you process things? I don't know where you live so not sure what the general level of service is in your area. Did you have a lumbar puncture yet? That's usually the final decider. In the meantime, make a pest of yourself to get an earlier/cancellation appointment. You shouldn't have to, but you need to be your own advocate in this life. All the best, stay strong....

jps1980

@jps1980

Hi I had a lumbar puncture in October of last year and this was positive for oligoclonal banding my csf. What my neurologist said about this was as follows hes put this in the letter to my gp. John doesn't meet the McDonald criteria for diagnosis of MS but in my opinion he clinically does have ms on the balance of probabilities. I've had a referral to a neuro psychologist and I'm awaiting to be given an appointment.

Stumbler

@Stumbler

@jps1980 , your next appointment may not be until November, but you still deserve an update when the scan results are available. Give it four weeks then enquire via the Neuro's secretary. Good luck