Neurology Appointment - Suspected Peripheral Neuropathy

Hi everyone, just looking for some advice and experiences please. I have a neurology appointment next week for suspected peripheral neuropathy (up to my ankles at the moment and some in hands) and I'm the type of person who likes to be well prepared for consultants appointments. I will have my notes and history, but as this is my first visit to a neurologist I was hoping for some pointers as to what to expect from a neurology appointment (e.g. Do they do any tests on the day etc)?

Brief background, in January my rheumatologist decided I did not need immune suppressors (Leflunomide) anymore as there was no current indication of active vasculitis in my bloods (despite some symptoms) and as such "they are doing more harm than good". He stopped them immediately, leaving me just on 5mg of Pred (he wants to stop this as well but my GP won't agree). Well, you can guess what happened next - all kind of strange things started happening as the immune suppressors left my system, such as:

- lost feeling (other than tingling) in my feet. My hands starting to go the same way as well. Hence the neurology appointment.

- intermittent blood and protein in urine has become regular blood and protein in urine

- huge increase of pain and fatigue

- tinnitus, positional vertigo and some night sweats for first time in 4 years

- and I now feel generally very very unwell again

My GP is doing a wonderful job in working around the rheumatologist (who won't change his view as bloods still show no evidence of active disease) to try and resolve by liaising directly with my Nethrologist for tests, other consultants appointments, etc, so I have no complaints that generally matters are in hand and progressing.

2 Replies

  • Hi PCAD,

    It would be unusual to have nerve conduction tests for peripheral neuropathy at your initial appt, they are usually done at another time.

    The thing that stands out for me about your post is the attitude of your Rheumatologist. In my experience once a Consultants mind is made up its very hard to change it. Have you thought about requesting a second opinion with another Rheumy who is more knowledgable about Vasculitis? If you let me know where you stay I can recommend someone.

  • You are welcome to phone or e mail either John or myself on the VUK helpline if you would like to talk things over.


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