Limboland and going stir crazy!

New diagnosis and before diagnosis
1

Hello all,

Just looking for some advice please. So started in Feb this year with pins and needles in left foot and lower leg, this gradually improved, also had major balance issues ended up covered in bruises. Fast forward to end May, over 5 days pins and needles spread to both legs, then got saddle anaesthesia with awful heavy feeling in back passage (like I’d had an accident) and no feeling in pelvic floor area, then a week or so later had awful tight feeling from upper abdomen down to pelvis as if id been strapped into a tight corset. All the other symptoms remained + occasionally it would feel like someone was pouring hot water over my left leg and electric shock feeling down spine when bending neck forward. Then 3/4 weeks later developed visual problems, mainly in right eye. Had to stop work at that point, not sure how I carried on so long tbh.

Had a lumbar puncture and brain scan and cervical spine MRI. So lumbar puncture showed high white blood cells, protein and was positive for OC bands. Serum was clear. Brain scan showed 2 lesions but neurologist said it was not typical of ms but still could be. Lesion found on cervical spine. Was given 5 days of IV steroids which took off the tight feeling and the pins and needles. Improved vision for a few weeks but now blurry, especially when walking or after a shower or hot drink. Neurologist then mentioned it could be neuromyelitis optica, bloods sent for antibodies. He basically said it’s definitely autoimmune but it’s working out exactly what it is, likely to be MS but could be NMO.

So, had contrast brain MRI test and evoke potential test 2 weeks ago. Still can’t work, (I’m a midwife) as I can’t stand for very long, although walking is ok, (balance issues aside).

Hubbie & I went to France for the day last week, really really long day, was too weak to even to push myself up to get out of the car at the end and since then just feel utterly, utterly exhausted where my arms ache like I’ve done 1000 push ups. I didn’t have fatigue at the beginning.

I need to get back to work and I just don’t know what I’m doing wrong that i just can’t get my energy levels back up. I’m on Pregabalin which helps the ‘tight’ feeling in my legs but i have so many questions!!

Is this normal?? Is there anything i can do? What about work? Does it sound like ms?

I’m just waiting to hear from neurologist and it’s driving me nuts, I completely understand that they need to be sure though.

Thank you for taking the time to read this.

2

Oh poor you, what a year of misery you’ve had.

Still to be waiting for a diagnosis after all the tests, the symptoms and the endless limbo. If your blood went to check for NMO antibodies, you’ve had the LP and Evoked Potentials tests that would differentiate MS from NMO do you know when you’ll get the results? If you don’t have an appointment with the neurologist scheduled, perhaps you could phone his/her secretary and ask when you’ll expect to get the results, and of course any treatment (if it’s NMO) or disease modifying drugs (if it’s MS).

Obviously to me, and probably most people who read your post, it does sound like MS. But then NMO is often mistakenly diagnosed as MS, so that’s not surprising. There’s no short cut to the results from your neurologist.

With regard to the fatigue you are experiencing, have a look at https://www.mstrust.org.uk/a-z/fatigue Basically, the idea behind fatigue management is that you break tasks down into smaller chunks and rest as much as possible. A long day trip to France is the kind of major effort that will wipe someone with fatigue out completely (as you found).

In terms of your work, I’m sure you’re desperate to be feeling better enough to return. But while you’re feeling the symptoms you have, including fatigue, so long as your employer is happy, then you really are better off waiting for the diagnosis and some treatment.

Whichever diagnosis you end up with, you should be able to get some physiotherapy help, which will assist in the fatigue management and help you to regain your strength.

Best of luck, keep posting on here and let us know what happens.

Sue

3

Thanks Sue for your reply. I will call the secretary tomorrow and see if I can get an appointment. I hate letting them down at work but you’re right it’s better to wait as there is no way I can work feeling like this. I will keep posting and will let you know what happens.

4

This isn’t helpful at all but just wanted to say hi as I’m a fellow midwife! Also off work atm although mine is more due to cognitive issues (it got so bad I didn’t recognise where I was when I got off my bus-I was on the corner of my road…!, and I had got to the point where I was constantly terrified I was making mistakes, every shift I felt like someone was going to pull me aside for a meeting to say I had made a drug error or a mistake in my clinical judgment had led to someone losing their baby or something, you so need to be on your A game to provide the standard of care the women deserve don’t you. Really hope you get some answers soon though. Try not to worry about work too much, you need to concentrate on your own recovery before you can do your job as well as you want to be able to.

5

Hi there, sorry I thought I’d replied! I do things and then can’t remember if I did them or not.

It’s nice to meet you so to speak. Thank you for the wise words. You’re SO right, you really need to be on your A game. It’s such a big responsibility. I’m lucky in a way that I work on the early pregnancy unit so get to sit more than if i was on labour ward. But still, as my vision is so blurry i keep worrying that I’ll give someone the wrong BHCG result!!!

Do you mind me asking what part of the country are you in?

I’ve done loads of night shifts in the past and been tired but this fatigue is unlike anything I’ve ever had.

I rang the neurology nurses this afternoon, she told me all the test results are back, the consultant has dictated a letter and they are getting me an urgent clinic appointment.

Hopefully at least then I’ll have a diagnosis and then I can plan.

6

Ha I have that exact issue, I keep making my son his packed lunch twice as I don’t remember doing it the first time! I live in Kent but work up in London :), big busy teaching hospital. I’m mostly in anc and mfau but we randomly get pulled to cover on labour ward etc when short staffed, I’ve been a nervous wreck in the more ‘high risk’ areas recently! Yes absolutely know what you mean, I’ve been experiencing some serious fatigue here too, that kind of walking through treacle don’t even have the energy to answer a yes or no question exhaustion! It sounds like you’re going to get some answers really soon which is positive!! Hopefully the fact they got you an urgent appt is purely because of the symptoms you’ve had rather than any sinister findings… Although it’s odd isn’t it, in a way you want them to find something but then equally this wouldn’t be a diagnosis that any of us would want!

7

Absolutely, I remember saying to the neurologist who did the lumbar puncture “my worst fear is that you don’t find anything” after months of symptoms and feeling like no one believed me because it’s hidden really. The next day he said to me “I know it was your biggest fear but honestly I wish we hadn’t found anything”. I know it sounds strange because like you say no one wants to have MS although I’d rather have that than NMO but I just want to know now. I’m in North Norfolk, not a teaching hospital but we regularly get pulled to labour ward. Carole.

8

Hi

It’s good to know your results are all back. Also that your neurologist has dictated a letter. But I don’t suppose the nurses said, or even knew, how long it would take for the letter to be typed? I’m forever getting letters that say ‘dictated on 1st (of whatever month’, ‘typed on 25th’, ‘checked but sent unsigned to avoid delay’!!!

If you don’t get a letter and/or a clinic date this week, try phoning the neurologists secretary to ask the whereabouts of the letter. Plus the appointments team to check they have the request for an urgent appointment.

Sometimes you do have to hurry them up a bit. To know that the neurologist has seen all your results and put them into a letter, but not to have received it can drive you crazy.

Sue

9

You’re absolutely right Sue, I hate that he knows and I don’t, I’m guessing they can’t tell you news over the phone. Especially if it is MS. If its not that or NMO I really can’t think what else it could be! Out of interest what actually happens at an appointment if they confirm it’s ms? Do they then suggest treatment options?

I’m seeing occupational health and the pain clinic consultant on Tuesday I’m going to ask if they can look on the system for me to see if appointment is there, if not I’ll ring again.

Thanks for the advice.

Carole

10

I’m sorry to say I don’t know what will happen should you get an MS diagnosis. For me it’s too long ago and before the current crop of DMDs was available.

What I’d expect is that you’d have the DMD question raised.

Have you had any results yet? Is NMO still a possibility?

Sue

11

Yes it’s still a possibility. At one point the neurologist said “if you’ve got oligoclonal bands then it’ll be MS but if the NMO antibodies are positive then it’s NMO. The antibodies weren’t back last time I spoke to him, my oligoclonal bands were positive but then they are with NMO sometimes, also I had an antinuclear antibody test which was also positive which is more likely with NMO, I don’t know, I drive myself mad going over and over it. I know I just have to try and be patient and wait.

12

I’ve just been looking up some of the diagnostic criteria for NMO. In this review: https://www.uptodate.com/contents/neuromyelitis-optica-spectrum-disorders it states that ‘oligoclonal bands are typically absent (70 to 85 percent of cases)’ So while that’s not 100%, it does make NMO slightly less likely from my (admittedly amateur) perspective.

I do hope you get your diagnosis very soon. It is worrying, which is something you could really do without. Its bad enough to get stressed about a possible MS diagnosis, but to be faced with either bad diagnosis A, or worse diagnosis B is dreadful.

Sue

13

Yes, I’d seen that too but 15-30% are positive so I just don’t know. NMO is quite rare so here’s hoping.

I’m sure I will hear soon.

Thanks Sue

14

Hi Carole,

I am quite recently diagnosed (was actually via letter but I then contacted secretary for urgent appointment to discuss). I was given some info about DMTs and booked to see MS nurse 6 weeks later to discuss further and get ball rolling. The MS nurse was actually at the neuro appointment too. I’d been seeing them both for a couple of years as diagnosed CIS initiallly and on Rebif for a year. Currently on ocrelizumab and due next dose in 6 weeks. Good luck with your appointment.

15

Thank you. Appointment came through today for 21st October. The neurology nurse did say I would get a letter as well. Let’s see what happens.