Need diagnosis could be poms or pls

Hi, I’m new to forums but have been trying to get a diagnosis for a year and have been told that it could be poms or pls depending on the results of an mri and lp which I am yet to have. Already had an mri and EEG at my local hosp which came back negative so referred to royal london and having it all done again. My symptoms are spasticity in legs and dysarthria. No numbness or pins & needles. Awful cramps at night which have become worse recently. I am a nurse so have a medical background and not sure if this makes it worse or better for me being in the know. I am still working but get tired easily being on my feet all day. Thanks for listening

Sorry meant to say PPMS not poms.

Hi Gracie and welcome to the board! It is awful waiting for diagnosis… and I sympathise. People who have never experienced it would think us mad hoping to get a diagnosis… but they have no idea what it’s like to have symptoms without knowing what’s causing them. Along with a rollercoaster of different emotions, I also felt relief when I was finally told it was MS (if for no other reason to know that I wasn’t going mad and imagining it all). Nobody with MS (whichever type) has all the symptoms listed. MS is different for every single person. The Royal London is a terrific hospital and I hope they are able to give you some definite answers soon. I’m with the Royal Free… so not that far away! Fatigue unfortunately is one of the worst symptoms for many MSers… I had to give up work because of it and many others do same. However some people do continue to work and I think it works better if they have told their employers and everyone is aware of the problems… esp fatigue. I would hope that working in the NHS should make this easier for you… and of course will be much easier with a diagnosis. Hope you get some answers soon… in meantime, rest as much as possible… although I know that’s not easy… but try and drop things that aren’t absolutely essential… lower your standards when it comes to housework etc. Take care, Pat xx :slight_smile:

I have always found the Royal London to be pretty good, and hopefully, it will be the same for you.

If you still need a lumbar puncture then it’s worth asking for a sprotte needle, as explained in the excellent Barts & London blog.

I find magnesium (and stretching) helps ease problems with spasm & cramp and might be worth trying.

Yes it does make you feel like your going mad… I keep thinking someone is going to turn round and say oh it’s nothing your imagining it. I know I’m not though. I am being well supported within my job so am very lucky. Yes I have found the neurophysiology dept at royal London great. Only been for one day and on the same day the consultant managed to get me in for 2 tests. EMG and visual evoked potential so just have to return for MRI and LP. I will look into the sprotte needle. Thankyou for the link. :slight_smile: Just about to drink some tonic water to see if that works Thankyou gracie x

Hi Gracie. You’re right, living in limbo awaiting a dx is awful. It took 2 years to get mine too. I too was a nurse and like you kept thinking either I was the biggest wimp on earth, a total hypochondriac or just mad. I never have ms a thought, so when it was first suggested by the very blunt, arrogant and unsympathetic surgeon I was devastated. I thought I’d done all my grieving then but when I got my dx, lost my job and registration the entire grieving process started again. No, I don’t think being a nurse helps much at all, in fact it is worse as each new symptom worries you terribly.

Nothing in my text books explains what you’re going through. For months I wanted to ring my Neuro to make sure he hadn’t made a mistake but my LP was definitely positive. Fingers crossed you get answers soon. Fatigue is one of the worst of my symptoms too. Well done for managing to continue working. My employers were fantastic too but my doctor was adamant it was time to retire and once I’d sat and got my realism hat on I knew they were right. I can hardly dress myself, how can I nurse other people. Take care

Cath xx

Sorry to hear about your job Cathy. I only qualified 16 months ago as I was a mature student. (43). I don’t want to be at work at the moment as feel low but I want to save time off in case I really need it. Going to try acupuncture next week as I thought I would do something positive and thought it would help mentally as well. Gracie xxxxxxxxxxx

I found acupuncture relieved lower back pain and think there is definitely something in it. There are a range of reasonably priced alternative treatments on offer at the Walthamstow MS Therapy Centre and might be worth checking out (assuming it’s in range).

I expect you know this stuff already, but thought I would mention it, just in case.

Gracie I had acupuncture for pain in my lower back and it helped both that and bladder (continence) issues for a short time. I understand you feeling low and worrying about time off work, and you enter a vicious cycle of the stress / symptoms / low mood all affecting each other. Are you taking an anti depressant? They do help, believe me, even if you have them for a short time. I was off work sick for 2 1/2 years before I was retired and every morning that I felt slightly better I had the guilt trip as they were relying on the other RGN’s covering my shifts, it was awful and didn’t help my mood at all and stress then made symptoms worse. No wonder your mood’s low.

I hope the acupuncture works for you, but please look at all of your options. You know you’re not capable of working at present, nursing is challenging on the body and the mind, it requires you to be in good health or you’ll make your situation worse and you couldn’t give the standard of care you should, possibly being a risk to your patients. I wish you well and if I can be of any help please ask. Take care and make sure you rest, I found that really difficult as I was used to being on the go at full speed and felt guilty if I was idle, find something calm to do like knitting or reading that allows your body to rest and lets you still feel productive.

Cath xx

Hi, Thankyou for your comments. I started acupuncture and have had 3 treatments so far. My night cramps are now unnoticeable. Don’t know whether it was the acupuncture though or magnesium that iv been taking for few weeks. Still no diagnosis as going for LP and MRI with contrast next week then have to wait another 8 weeks to see consultant for results. Might go private if I can for the results. Couldn’t afford private for the tests but the charge for consultation is £180. Worth paying for peace of mind. I got told yesterday at occupational health, that they want to find me another job as the short shifts are not working out and as I’m not working with needles anymore due to 3 needlestick injuries, I can’t really do ward nursing. I don’t think that my upper body is involved but they said they can’t take that chance so hopefully the results will show where is affected. Thankyou for the link whammel, bit far for me but I think there may be somewhere here similar to that. (Chelmsford). Gracie xxxxxxxxxx

Gracie I’d contact the RCN or other nursing union if you’re a member as I don’t think your employer can just tell you to look for another job. I’m sure they have to try and accommodate you. I’m no expert, maybe someone else could help there. I’m glad the acupuncture is working and wish you well. Take care.

Cath xx