Doing the right thing?

Morning all.

Just a question really. I am currently at the age of 38 suffering from foot drop, and various numb patches around my hands face and back. I've recently had IV pred with very little effect. Currently on oral pred, plus a number of other drugs.

I've seen the rheumatologist weekly for the past 3 weeks most recently on Monday where we discussed the pros if being admitted and monitored and reviewed by neurology correctly. However the neurologist on this week is not the first choice clinician (we both have reservations) so decided that admission could wait, putting a brave face on it all I agreed. The parting comment was "gets any worse call me" now here is the question. I can not say it has got any worse however I can say that my tolerance is at rock bottom with it, I'm tired and really can not face another day of struggling today. Do I call or do I try and ride it out until next week Friday when I see a creditable nice neuro bod in clinic.

I am a nurse and appreciate the pressures on our beds at work which accompanied with the current neuro dr has influenced my reluctance to go down the inpatient pathway.

9 Replies

  • I think you might have answered your own question by writing it down? Sounds very much as if you want to try to hang on and wait.... Sounds rough, is there anything you can do to make the week easier for yourself? Polly

  • Thanks Polly.

    Easier..... I wish I knew that solution xx

  • Can't advise because you know already that waiting is the best option probably but I did just want to say that I relate entirely. I have icy cold numb feet and calves stretching up into my thighs and yet I also suffer from neuralgia in both. Hands hurt and I'm feeling pretty sorry for myself just now so I am at least well-placed to feel sorry for you too. Tilda x

  • Hi, is this numbness associated with RA or an additional problem? You see my daughter describes similar numb patches, especially on her face, arms and hands. She does not have RA but has been diagnosed with Pernicious Anaemia, which in fact means a lack of Vit B12. It is treated with injections of the vitamin every couple of months.

    It seems a long time to wait till a week on Friday. How bad can the current neurologist be?

    What a dilemma. Good luck.

  • Tilda. Hugs Hun it is hard isn't it

    Phoebe thanks for your reply. They are not sure what it is that is causing the numbness the dr this week (I nurse staff and manage her clinics) well if I said we mutually dislike one and another would suffice. So yes such a dilemma. :-(

  • Waiting is torture - especially for those of us not given to being patient in any shape or form. I am getting re-tested for Pernicous Anemia next week - this time while off folic acid which can mask the results and with a more specific test called the MMA and Homostocyine (sp?). I am paying for these myself just to rule it out for me hopefully. I have these tests taken a week today and then have to wait a further week for the results. I haven't even been referred to a neurologist - when I asked my GP last week she just said that they mostly don't come up with anything clear cut and she's pretty sure that in my case it's from the MTX that I took for 18 months. I would prefer for something a bit more thorough and want to tick things off for myself while I'm waiting to see if and when this yiucky numbness and parasthesia (with neuralgic pain) eases finally. It's been going on for 9 weeks now with me - what will I do if it never goes away? doesn't bear thinking about. Tilda x

  • Did you ever find out what caused it? Did it go away?

  • Lol it's frustrating. My consultant suspects it's MS exacerbated by cimzia. However it's only a suspicion.

  • What was the diagnosis?

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