Forum

Newly diagnosed and fed up

For years I have been having all sorts of strange and different symptoms. I persevered and finally got appointment to see a neurologist. I took a diary of all my different symptoms. After a couple of visits the neurologist admitted that he hadn’t got a clue what was wrong, but he would send me for an mri but didn’t expect it to show anything. I had my mri and got appointment back for Feb 2019. The neurologist said he was shocked to find demylation on my scan and told me that I had ms and that it was probably PPMS. I was then referred to the ms team. I waited over 3 months for my appointment with another neurologist. Whilst waiting I went to a coffee morning and accidentally met my local ms nurse so I showed her my letter that I had got from my first neurologist as he specialised in Epilepsy. I finally got to see the neurologist with the ms team.

At my appointment in May I just had the same neuro assessments again that the first one had carried out. I was then told that I would have bloods, mri with contrast and lumber puncture. I had mri at the end of June and LP beginning of August.

I’m still waiting for another appointment to get my results.

Since my initial diagnosis in February I just got my head down at work and tried to forget about it. Then after my LP I wasn’t very well and was struggling with severe headaches. I think this is when reality hit me and that I could no longer bury my head in the sand. I’m frustrated, angry, and very scared at the moment because I haven’t got any answers. My mood is at an all time low. I’m scared of eventually becoming a burden to my friends and family. I don’t have any children or a partner. I am the main carer for my elderly father that doesn’t understand my diagnosis.

My ms nurse has been absolutely brilliant but she is as frustrated as I am waiting for the results. At the last meeting with her I was showing signs of a relapse. But still not heard anything back from neurologist with regards to going on steroids. That was over 2wks ago.

Sorry for the long post. I was told it would help to write down my feelings. Looking at previous posts you have all been very helpful and understanding to other members , so I thought I have nothing to lose by writing this post.

hi jax

how very frustrating for you having come so far and now stuck on wait.

i’d talk to your GP about it all, especially your low mood and the responsibility for your dad.

s/he may decide that a mild anti depressant is in order.

also maybe could advise you on what help is available re your dad.

GPs are often overlooked once specialist become involved but the GP is about primary care and looking at the whole you.

your ms nurse sounds as wonderful as she should be, so continue to use her service.

your gp can prescribe steroids but would probably like a letter from your nurse or neuro to authorise it.

look after yourself because this is a stressful time and you are vulnerable to catching whatever nasty bugs are doing the rounds.

Sending you a big hug. I too am in the system with you awaiting a diagnosis (first symptom 15 years ago). Wish I had a group near me, my closest one is too far to travel. I am wondering about work too - I am a primary school teacher!

Hello

It sounds as though you’ve had what could be described as a rather spotty diagnostic history (another way of putting it is ‘a bit cr@p’).

Waiting all this time for the results of your MRI and LP is unconscionable. You could ask for help from your hospitals PALS (Patient Advice and Liaison Service). They could speed up your follow on appointment with the MS specialist neuro.

The initial neurologist thought it was PPMS, but you’ve just been having what appears to be a relapse? Both things can’t be true. People with primary progressive MS don’t have relapses. If in fact you have relapsing remitting MS, not progressive at all, it’s even worse that you’ve been waiting so long for appointments. If it is RRMS, you could have started a disease modifying drug (DMD) to reduce the number and severity of relapses.

Taking steroids for a relapse, if that’s what you’ve been experiencing, is supposed to hasten the end of the relapse. But you really need to have been diagnosed with RR before you start taking high dose steroids. They’re pretty nasty things to take (side effects include a vile taste in your mouth, a ‘speedy’ feeling, insomnia, edginess, stomach/oesophagus issues among others). If in fact you do have PPMS, steroids wouldn’t help.

In your situation, I think I’d first try phoning the neurologists secretary to find out when an appointment is likely to be. If s/he’s no help, or it’s likely to be a long way off, then I’d try the PALS unit.

I don’t think you should be passively waiting any longer. Feeling frustrated, angry and scared is completely reasonable. You deserve better treatment than you’ve had. It’s bad enough being diagnosed with MS, without all the delays you’ve had to put up with.

I suspect that it’s because you are the main carer for your father, you’ve put your own problems to one side. Doing that will lead you straight down the road into depression. You need someone to look after you and to help you get the assistance you need.

Writing on here can help. We’ll continue to try and support you, just by encouraging you to think about yourself even, and to get the help you need.

Sue

Thank you for your quick replies. I contacted my neurologists secretary and she gave me the number for appointments and advised me to call and get next available appointment. Ive got to wait until the 13th November but its a step in the right direction.

Newbie here - not sure if I’m in the right place. My daughter was diagnosed with MS in July of this year. Today, some ten or eleven weeks later, she finally had an appointment with an MS doctor and nurse. This only happened after she had phoned and left unanswered messages, emailed and written to the consultant’s secretary numerous times and been promised that letters etc had been sent to her (letters she didn’t receive or received much later, dated AFTER her calls). The pdf on DMTs states in its opening that “If you’ve recently found out you have MS, official guidelines say your neurologist should talk to you about treatment within six weeks of being diagnosed.” She has been advised that she will need a lumbar puncture and a further MRI scan but been given no indication (despite asking) when these might happen.

I know the NHS is underfunded and struggling but surely simple communication is not so difficult to achieve? Especially since she herself ‘called it,’ after doing her own research, as MS over two years ago but couldn’t get the various medical professionals to take her seriously. It really feels as though she is getting a raw deal. Does anybody know the best way to proceed? Thank you in advance.

Jax - you need to familiarise yourself with the differences between PPMS and RRMS (and SPMS) and work out from the symptoms what type you have. If it’s rrms you need to read up about the various drugs available and push to get these drugs when you see the neuro. If it’s PPMS (or SPMS) there’s nothing available at the moment. being dx’d with m.s. is being dumped on from a great height - everything has changed but nothing has changed! you don’t know how things will pan out - (having m.s. will certainly not make anything any easier!) You mention your job, your father, your friends/family. All you can do is carry on what you’re doing now - over time things will probably get harder and you have to address issues as they crop up. Try not to look on the dark side - (not always easy) and don’t focus on the future and worry about what may happen. Take each day at a time. The bottom line is that like the rest of you have to battle away and make the best of a bad job. Do keep posting on this site - my guess is we have all experienced what you have -

Mama

you have written on a thread started by someone else, no problem but you will get more replies if you start a new thread.

click on the new thread button, give it a title and away you go.

the diagnostic process is a long and winding road and it is usual to have the process started by a general neurologist.

if it looks like ms s/he will pass you on to an MS specialist neuro.

this ms specialist can prescribe DMTs and will introduce you to your MS nurse.

so please tell your daughter that the process can be slow but to hang on in there.

to be fair her path to diagnosis seems to be taking a fairly normal time.

Thanks Carole58. Other fora I’ve participated in have conventions asking you to search suitable threads first rather than starting a new one and OH the vitriol if you don’t I’m sure everybody on here is kind though.

Don’t believe everything you’re told in the early stages, especially by people who aren’t specialists. Unfortunately diagnosing neurological disorders isn’t that easy and most take a long time before ending up MS confirmed, it’s not so much about identifying MS, it’s about ruling out all the other nasties that are possibilities, Parkinson’s, MND, Devics disease, lupus to name only a few. Trying to make others understand is impossible when you barely understand yourself, keeping your head together is difficult and it’s easy for your frustrations and depression about it all to impact relationships to the point of destruction, be wary of that and try to be forgiving of others lack of understanding. Just know from someone whose been to the very depths of hell that BIG turnarounds in your situation CAN happen over time, life’s never going to be the same again unfortunately but you can function to a level where life’s worth living again, NOTHING stays the same forever, time reveals and changes things constantly.