My neurologist is getting more chatty. I’m becoming more interesting to him. I’m a collection of interesting neurological signs that he is yet to put into a diagnostic box.
Today we ran through my symptoms – pins and needles in hands and feet, ranging from mild to painful. Sometimes just a tingling feeling, sometimes burning pain. I still have some difficulty swallowing, but I am much improved since the oesophageal dilation. Now I can swallow food fine, I mostly have trouble with liquids feeling like I am swallowing a golf ball. Weird. He agrees. I have memory problems, and have episodes of confusion. Then there’s the vision problems, but only in my right eye. Today my facial tic was in residence also, and my eye was droopy and I was unable to fully open it. A very clear and obvious sign. I have found that even when doctors work within specialties where disease is often invisible, appointments still run better when you have noticeable, visible signs.
Not symptoms. Signs.
My droopy eye and blurred vision interested him. But he said it is most likely blepharospasm. It could be neurological, or it could be related to my dry eyes (Sjogren’s). It is easily treatable with botox injections. Sounds good! Stupidly I forgot to make an appointment as I left. (Told you I had memory problems!) He suggested I come back in a few weeks and have the botox injections. My eyesight should then improve and I won’t have those days where I can’t leave the house because I can’t see well enough to drive safely.
For the pins and needles and numbness he did a nerve conduction study. He attached electrodes to various points on my hands and feet and sent an electric charge to test the nerve response. He also inserted needles into various places. Parts of it were uncomfortable, but not painful.
He diagnosed small fibre peripheral neuropathy. He didn’t talk about cause or treatment. I do know that Arava is associated with peripheral neuropathy and I mentioned this to him. He said ‘possibly’ but no more than that. I said he’s getting chattier, but he’s still a man of few words.
I hope this doesn’t mean I have to stop Arava. It’s currently the only DMARD I can take. (Aside from plaquenil, which is a very mild DMARD and doesn’t do much on its own).
I asked him about biologicals and if there were any reason that I shouldn’t go back on them. He didn’t know much about Rheumatoid Arthritis medications, as you’d expect. He didn’t see a problem, however.
My follow up MRI showed the same issues as the previous one. He leans towards small strokes, and so stay on the blood thinners (aspirin) and keep an eye on my blood pressure. The MRA was normal, which is a huge relief. Cerebral vasculitis is bad, so I’m very glad that he wasn’t right about that. I would do cartwheels, but you know, RA and all. He was happily surprised that the MRA was clear.
MS can’t be ruled out, but he doesn’t believe that I have MS. This pleases me very much. I’ll have follow up MRIs, but not for 12 months, unless things worse. It’s not off the table, but it’s not something that I’m going to waste time worrying about.
All in all, pretty good news. He’s just tackling each set of signs and symptoms, one at a time, and treating the symptoms. Treating the cause would be better, but the cause is unknown. He is concerned with improving my quality of life. That is more than good enough for me right now.
I do reflect on the fact that a ‘normal’ person would probably find all of this stuff scary and terrible and be panicking about the future and the possibly awful things that could develop from here.
Almost ten years of severe RA has taught me that there’s nothing to be gained by worrying about things that haven’t happened yet. May never happen, in fact. I always figure out what the worst case scenario is, know what I need to watch for, and then put it out of my mind.
And in truth my RA symptoms, in particular the severe pain of RA, is worse than these neurological ticks. I realised after I left I forgot to tell him about my urinary problems, and that I have woken up choking on my saliva a few times. Those things could be neurological as well. But no big. I’ll be seeing him again in a few weeks. I’ll talk to him then.
In the meantime, it’s almost time to head to rheumy. And talk about how to knock my RA down. I think it’s time to move on to the next biological. My fourth out of the five that I am allowed under medicare. That is, the cost will be subsidised by the government. I’m running out of options. But there is no use sticking with treatments that don’t work, or don’t work well enough.
Onwards.
…and upwards!!! Glad to hear that you got more interaction with him on this visit Neen. It absolutely infuriates me that some specialists are like this. I had ‘words’with a neurosurgeon I was seeing once (unfortunately it’s not ‘just’ neuro docs that are like this), his response to my questions were as brief as possible. He actually stood up to end our consult and I just sat there staring at him. After a loooong minute or so, he asked if there was anything else. Usually when talking about anything emotional to me at all, I lose it. My throat starts to burn and close up, tears start flowing and my what’s left of my voice squeezes out at 2 octaves higher…for some reason that day, (thank God), it didn’t happen and I was able to tell him how scared I was that the nerve damage in my lower back was going to continue and leave me unable to walk, (it since has), that I was incredibly scared that no-one could decide just WHAT the problem actually was…did I have AS or not and is there anything at all that can be done about whatever it is???? I then said that on top of all that I felt extremely out of control because I was uneducated on what could be done about my problem and that I felt that his job as my doctor,that I chose to pay and put my trust into, was to alleviate all these fears and tell me EXACTLY what was happening, why and whether or not anything could be done about it. He sat like a stunned mullet for a couple of seconds, then cleared his throat and apologised. He reached his hand across the desk and said, “Hi Alison, my name is Dr. (cant remember atm!), I’ve been looking at an MRI that Dr. Lewis sent me of yours…we have a lot to talk about…. ” To this day he is now, still one of the best docs I have seen. Sometimes I think you just have to remind them that although they might think so, they are not God. lol I really hope they work out just what all of your other symptoms mean Neen…take care, Alison xxx
Alison, you are amazing! What a great way to handle a non-communicative doctor. I wish I was more like you!!! But I will try that next time I am faced with a doctor who won’t talk, won’t explain or answer questions. I’m betting you had a huge impact on this doctor and he changed his ways after you reminded him what his job is – to treat the patient, the person, not just look at people as a collection of symptoms. I’m glad that he was a decent enough person to realised that he’d gone wrong, and to fix his attitude. You have probably helped umpteen other patients who have seen him since! And Im sorry you’re in so much pain. Doctors seem to forget that we are afraid. And we have every right to be! And even if the news isn’t great, it is better to know what we are in for. And have that explained in a simple, but kind way. I hope you’re doing OK and you’re getting the treatment you need. Take care.