Hi everybody. It's been over 4 weeks since I last posted and have refrained from doing so as requested, however there have been a number of developments, so I've really felt the need to post my update. Not a day has passed where I have not thought about posting.
I'm now off work with this. The last time I posted just before Xmas, I had begun to feel weakness in both my thighs. 3 weeks on and that feeling is the same, though now it just feels like both my whole legs. Sometimes I really do feel like my legs will buckle from under me, though this has not happened yet. In addition to this, my right arm has gone the same way, particularly so at the shoulder and it gets tired so easily, just from even writing this message. Apart from when I had foot drop, I haven't had any instances yet where I've not been able to do anything no matter how hard I try, but I do feel as if everything is setup for that to happen next.
I also had an incident where I did collapse in the bathroom with really bad dizziness and vertigo. Turns out I had the Australian flu but I still feel very dizzy despite this virus clearing up. I have permanent tinnitus as well as an ear full of wax but had antibiotics for the flu so this should have killed any ear infection too. So dizziness is the latest addition to my symptoms and it just won't go away. Though I will say that it is mild. But noticeable.
The pain and discomfort in the arches of both feet has also continued and I've had that for 2 months now. The muscles quite often contract in that area too, more so at rest. Again, it's fairly mild but it's something that has cropped up just after the foot drop.
I went to the hospital after I collapsed and the doctor did a physical exam. She said everything was normal, describing my reflexes as 'brisk throughout' but still well within normal range. I told her about my MND concerns and she checked for weakness in my arms and legs and could not find any. She says she would not expect the kind of normal physical exam results from someone suffering from MND.
However, there definitely seems to be something going on. I know when my body is not right. I am still having very aggressive body/limb jerks, usually in legs, though recently this has improved since I was given anti anxiety/anti-depressant medication.
All possible blood tests have been done and all returned normal results. My brain MRI was clear apart from some lesions on my temporal lobe which means it's unlikely to be MS. I had my full spine MRI done on 10th Jan so that may end up ruling out MS completely. I saw from my GP notes that all the reflex tests that my neuro had done were negative. I couldn't actually see what they all were but 1 of them was a negative Hoffman test which is obviously positive news. My reflexes have always been within normal range though they are now described as 'brisk throughout'. I have been keeping a close eye every time somebody checks my reflexes and to my eyes at least, they have always been the same. I was told by a GP that it could not be neurological without any noticeable reflex abnormalities. Can't say that I've read or seen this anywhere else though.
I am just very worried about my arms and legs, my legs in particular. I have had some nights where my right thigh is so stiff it feels like I am lying on concrete and actually couldn't even lie on my right side for a couple of nights. One morning I had this really scary moment when I woke up and went to bring my legs towards me and they didn't respond for about 1 second. It felt so weird when they did eventually bend as it has took so long to respond to the instruction that it felt like they were moving themselves. I definitely feel they are weaker when I've been using them more. I have read that phases of weakness like this is how ALS begins. However, I do accept that It does seem unusual for foot drop to clear up 100% for someone suffering from this. And it has cleared up 100%, there is no difference between my right and left foot now. 3 months ago I could only move my toes in my right foot.
So I just wanted to ask if anyone feels that any or all of this warrants any additional concerns for ALS? I just seem to be running out of alternative causes and this is just lurching in the background. I am due back to visit the neuro on 8th Feb, so I promise I will keep posting to a minimum but if I could get your opinions on these latest developments then I would be very, very grateful. I should also have my spine MRI results back in a week or 2 which may throw something up. Sorry for the long post but I've got on a roll and just wanted to put everything down. Thank you in advance. Neil
