Hi. I’ve been having symptoms on and off for 4 years now, mainly numbness, tingling, sensations of heat mainly in my right leg but also in my left leg and arms in patches. To start with it was mild and far apart, now it’s happening about every 4 months, I’m fine inbetween and then it randomly starts happening again, I’ve now started getting muscle twitches, brain fog and tiredness with it. I saw a gp in march who suspected ms but very soon after it was lockdown and I had no follow up from that. My symptoms went, the last 2 weeks they’ve been back and feel.mire intense, I’ve had a phone appointment this morning with a different dr and she says I have low iron, I always have even prior to these symptoms and my thyroid is a little out, she wants them checking first. I’m worried that I have ms and that it’s been undiagnosed for 4 years and will continue to be while I have bloods and whatever else. If I have low iron (I will) I’m going to be asked to take iron for months to see if it goes away which it won’t which is more of a delay. I just want some proper investigations. I work in A+E and I’m scared it’s going to stop me doing my job that I love and looking after my kids. I know people who go undiagnosed and untreated for a long time are more likely to develop secondary progressive ms and I have visions of me ending up disabled in a wheelchair and having 24 hour care. How can I push them?
Hi Rebecca
It is unfortunate that Covid has caused a delay in your diagnosis but that seems to be the way things are going.
Once investigations begin you could still expect it to take up to 12 months.
start taking the iron supplements and make regular appointments to see your GP.
make a note of how your symptoms began in a sporadic manner, how you feel fine in between. new symptoms (muscle twitches, brain fog, fatigue) so that you won’t miss anything out of your consultation.
tell your GP how the not knowing is making you worry.
I have never heard that people who are undiagnosed and untreated for a long time (on your case 4 years) are more likely to develop secondary progressive.
If you are diagnosed with RRMS then SP could develop sooner or later or never.
However don’t overthink this because it is my opinion that stress make everything worse.
So do whatever you can to minimise stress, eat well and get quality sleep.
Have something to look forward to such as meeting friends for coffee and cake (or whatever floats your boat).
I bought ticket to see bands when in your position.
begin a new hobby such as painting (or knitting etc) to stop the over thinking.
You can’t “push” them other than regular visits to GP.
wishing you well
Carole x
Hi Rebecca, so sorry to her you are going through all this. May I say a personal thankyou for being one of our NHS angels, for the wonderful work you do.
So ok, it might turn out to be MS but it may not.
If it is and your symptoms dont worsen, maybe your employers could find an alternative position for you, which helps with everything.
Now I waited years to be properly diagnosed…dont wish to scare you, but that was 22 years! Turned out to be PPMS and no treatment to slow it was offered.
But that is rare and a lot of folk with MS continue to work, with meds to control progression.
People can still lead a great life with MS, as long as they have good support, pace their activities and get rest and help when they can.
Covid has slowed everything down, so you`ll have to try to be patient and go with the flo as regards appointments and tests.
Look after yourself and hang in there chick.
Love Boudsx
Hi Rebecca Ive got my first neuro appt soon though most recent Gp appt was the one that led to onwards referral. Ive said at least 2x occasions ive though ive been symptomatic for Ms but it clearly wasn’t ‘enough’ then. In order to make onward referral they probably need to do at least some basic tests beforehand. Iron and b12 can cause strange problems though moreso b12 than iron but my gp did basic neuro test including heel-toe/ strength etc too. If getting no joy- ask them what they think are causing it then. Kerp a note. Be persistent
Hi Rebecca. I can understand how you are feeling. I was diagnosed with MS over the phone during lockdown, so it’s not an easy time, especially when appointments are delayed/done over the phone. It took me over a year to be diagnosed after I was first referred by my GP, although I’m sure I had been living with symptoms for years. There were lots of blood tests they have to do first, Im sure I had these repeated at least twice and had a couple of MRIS 6 months apart. I think it can be a long time to go through the motions normally but of course covid has messed things up too. Try not to stress, I know it’s easier said than done when waiting for appointments, etc. but you juat have to do your best to push it to the back of your mind for now and just manage symptoms as and when they appear, making sure you get in touch with your GP for help with this. If you are not doing so already, I would strongly recommend keeping a symptoms diary, I was advised to do this pre-diagnosis and it will greatly help when you have a neuro appointment. Wish you all the best.
I totally get the worrying that it’s all costing you time in terms of getting started on treatment. But in the grand scheme of getting a diagnosis it certainly isn’t unusual for it to take a long time. From what I’ve read only people with very blatant first symptoms - usually optic neuritis - get diagnosed quickly. So I wouldn’t worry too much about that aspect, just keep doing what you’re doing and sooner or later the answer will come.
Best of luck with everything - I know the stress is just horrible when it feels like they aren’t acting with any sense of urgency and it’s your health at stake. Wishing you a good outcome xxx
that isnt always the case about ON. I went blind twice in 2000 and it was totally dismissed by my GP at the time. eventually after years of deterioration, i had VEP test in 2007 which proved ON bilaterally. finally after several years of positives tests on MRI, etc, in 2016 another VEP test showed progressive ON and brain slowing indicating lesions. and i was diagnosed finally with PPMS, with no chance of treatment, not even ocrevus as i had it too long. oh the reason why they didnt bother to take the first symptom seriously was my birthdate, 1951. WAY TOO OLD FOR MS. If i sound cynical it is because I am. my neuro has learnt now that 20 years at onset I was 49 and had issues several years before so i could have started symptoms before 2000 and mid to late forties a lot of people can be diagnosed with PPMS, and weirdly with PPMS a lot of patients can start with ON. In the states I read that a lot of neuros call PPMS SPINAL MS.
Makes me angry on your behalf. How completely inexcusable. I don’t think GPs are aware enough of the signs or the implications of delaying diagnosis. Mind you, my first Neuro was just as relaxed and dismissive so I think there is generally a lot of ignorance surrounding ms. How are your eyes now? I wonder if treatment options will be developed/become available in the future. I keep reading about how many advanced they’re making X
I appreciate Drs think we all have health anxiety if we reference fear of MS (hence they hate the Dr Google mentality…) and they dont join the dots well unless as you say there is a blatant MS esque type presentation - significant change in mobility , ON, especially as bladder issues, altered sensations. muscle stiffness are more likely to be seen as something else .
I understand in the earliest of symptoms, something like altered sensations is fairly vague, but even for all that, it does signify something. Also I think when we start joining dots we can push for it. So these recurrent horrid migraine ish type pains i think now have been TN. Cheek pain all day yesterday, and went away, now back after breakfast
For a GP to ignore blindness however, is absolutely bewildering and actually worthy of formal measures, not least as the boat has been missed for treatment