Hello, my diagnosis is IgM Monoclonal gammopathy of unknown significance (MGUS) with sensory and motor axonal neuropathy (the neuropathy started a long time before I had the diagnosis of Monoclonal gammopathy of unknown significance (MGUS)). Recently I had a very bad infection (UTI) probably connected to my kidney stone. Not for the first time. This last infection completely wiped me out and I had three bad falls. The first one trying to get out of bed to go to the toilet - I was on the floor for 6 hours as I couldn’t get up - before my daughter came in the morning and found me. The next night the very same thing happened again but I was only on the floor for 4 hours that time. Then a few nights after I fell at the top of the stairs and couldn’t move. My daughter called the ambulance and also a locksmith as I’d foolishly left the key in the door lock and she couldn’t unlock the door from the outside. It took the locksmith 3 hours battering down the door, by which time the paramedics arrived just as he got it open. They managed to lift me off the floor and get me back in bed. They wanted to take me to hospital but I refused to leave my little dog. They were kind enough to stay with me for over 2 hours until my temperature and BP had dropped to reasonable levels. Anyway, the point of all this rambling is to say that since I’ve started to get better I am finding it very difficult to walk and have to use a walking stick. It feels like I’m walking on 6ft stilts and I feel very wobbly and worried that the wrong movement will make me fall over. It’s been two weeks since I’ve started feeling better in myself but my legs/feet aren’t improving at the same pace. In fact I feel I’ve reached a plateau snd I’m always going to be like this now. Can someone who also has neuropathy like me tell me of their experience or reassure me that it won’t always be like this. And that every time I get an infection I will go backwards and the muscle weakness will strike all over again. I am only 66 but right now feel about 90.
Any advice appreciated.
Oh @Ubbums12 this sounds very scary to me.
Have you talked to anyone in your medical team from GP, specialist nurse or consultant and perhaps your GP might be able to help with physiotherapy, if you feel that might help.
Nothing to do with my blood cancer, but I find that muscle weakness has taken me a long time to build back up from.
As for your urine infections, and as you say this is a complex issue probably connected to your kidney stone, it is probably a matter for the medical person you are dealing with for this issue. There are a lot of different types of infection and each need different treatments, trust me I have had lots of them.
As you say you certainly do not want another infection.
I hope others can share their experiences for you.
Look after yourself and take it steady and please do keep posting how you are doing
@Erica thanks for your reply. Unfortunately me GP surgery is notoriously bad for getting appointments and my GPs attitude is that my kidney stones are taken care of by a hospital consultant and my neuropathy is taken care of by my neurologist. As it happens I am having the kidney stone blasted under local anaesthetic on 28 Aug (and another two times after that on 11 and 25 Sept). Then on 3 Sept I have my first appointment with the Haemotology Clinic and then a Neurologist appointment on 30 Sept, so I will wait to get expert advice then. In the meantime I just thought I’d ask for anyone else’s experience/advice.
Thanks so much for your reply and it is good to know that you have expert appointments coming up.
Perhaps this is your opportunity to write down any fears, questions and practicalities you have for them so that you cover everything you would like answers to, I believe in being pleasantly assertive.
Look after yourself and your little dog
Hi there
Sorry to hear your having falls
Have you reported this to your neurologist?
I’m sure you will be making the haematologist aware of these falls also.
Could I kindly suggest maybe getting an alarm that you can wear around your neck/wrist and install a key box so that you don’t have to stay on your floor for hours waiting for your daughter to arrive and emergency services can access your home with a key box
I speak from family experience
@2DB thank you for your concern.
I do already have a lockbox with key, the problem was that I’d foolishly left my door keys in the back of the door, so when my daughter trie to use the key to get in it wouldn’t work. Hence the locksmith.
Since the falls I have got myself an emergency bracelet. And I can’t wait for my appoints with Haemotology and the Neurologist in September so I can tell them about the falls. In fact, I have a long list of things to tell them.
Good idea @Erica .
I have already written down all my concerns to ask the experts in September as I don’t trust myself to remember everything.
But thank you for the reminder as I’m sure there’ll be more to add.
Just wanted to give an update on my appointment with the Haematologist on 3 September. He spent a whole hour talking to me and examining me which was so refreshing after the usual 5 or 10 mins that all previous doctors have given. He has recommended a full head to toe CT scan and a Bone Marrow Biopsy on 24 Sept. I left that appointment with a feeling of euphoria that at last someone in the medical profession is going to take care of me properly. Will update you again when I get the results, but honestly the reassurance I felt from this Consultant was so uplifting that I almost don’t care what the outcome of the tests will be. Just knowing that I am at last in good hands will carry me through for now.
Oh @Ubbums12 reading your post the feeling of euphoria even rubbed off on me.
What an appointment and what a difference in how you felt.
Please do let us know how your tests go and perhaps just sit with those feelings, I feel all warm and glowy now