That pesky Neuropathy!

So the up and down issues continue along with some additional issues that I could do without. The last couple of weeks have continued to offer their challenges with up and down muscle/tendon type pains and increased neuropathy issues. In particular the burning in my knees has flared multiple times and I’m getting the uncomfortable pin prick type sensations throughout every day at the moment. Both of these are a worsening of symptoms I could do without. I’m also finding that my right eye vision is frequently more blurry and is having a noticeable impact on my vision in general. I did get my eyes tested last week and although my prescription has changed quite a bit in a year he didn’t notice anything suspicious in the eye health or pressure test. I think I will mention it to my GP on my next visit┬ábecause something is going on there… yet another thing!

In addition to that the prostate concern continues with additional blood taken to day to test PSA levels, full count and a number of other markers. I am concerned about this and hope that it is a case of a benign prostate related issue. I also have an echocardiogram in a couple of weeks time to check out my heart, I don’t imagine they will find anything of concern but it’s good to be checked out anyway.

In my last post I mentioned I had a GP appointment booked and that went well. The GP who isn’t one I have seen very often was pretty interested in the Cipro reaction and asked quite a few questions. He also said he would arrange for some physio and gave me some details about getting help with general wellbeing and dealing with the stress of this whole situation. I wish there was some way to reduce or eradicate the neuropathy and allow the muscles to strengthen again. The pin pricking isn’t debilitating but it is pretty annoying, it’s the tendon twitches, muscle aches and joint pains that cause the most restriction and pain. I know that I’m suffering a bunch of symptoms of autoimmune disease and mitochondrial damage caused by the medicine but the uncertainty of recovery and timescales plays on my mind daily… there’s no doubt I’m somewhat consumed by the situation with my health above pretty much anything else which isn’t unexpected considering without my health my options in life are vastly reduced.

Stress levels have been much higher as well which I think is impacting my mood, my sleep and my physical floxing symptoms. Life is throwing everything including the kitchen sink in our general direction at the moment and it really is overwhelming at times. All I know is that life throws up many challenges and many surprises, some good and some bad, we just have to try and wade through and make the best of what we can.

Visit to Consultant

Blood test war wound!

Just an update on the results of my visit to the consultant last Wednesday. It was a pretty epic journey down from North Norfolk to Worthing! Parking at the hospital was a nightmare so if you ever have to go there look for alternative parking. In short she once again emphasised how important it is to not get stress or get depressed as those emotions act as an immunosuppressant. She then looked at my symptoms, went through them and suggested that some could easily be down to anxiety/stress which I did agree but I also made it clear that much of the anxiety and depression comes from worrying about the continued health issues in addition to any every day life stress.

She also went through how the Cipro is an important and useful drug in many difficult situations but like any drug it can react badly with certain people as in my case, which I understand. I do believe that in a life or death scenario where there’s no option then the choice is very difficult, for me at least I won’t take them again and she said to me to avoid them in future.

The first stage of her investigation is to rule out any mechanical issues which a little unfortunately focused on my recent hip/back issues rather than things as a whole. However if she’s wanting to check out things then I guess it’s no bad thing. If there is a degradation in my muscles or joints that is visible then hopefully it will provide some direction as to treatment options. So I had a bunch of blood tests again to test largely for immune issues and inflammatory issues. I also had a hip x-ray and I’m going to be sent an MRI appointment and also a nerve conduction testing appointment.

One thing she made clear was that any radical diets or naturalistic approaches would likely do little if anything and that there was little actual evidence that these things had much if any impact. She told me to eat healthy food, lots of antioxidant foods but that’s it. She advised me not to stop dairy and insisted that doing so could have more of a negative impact than positive. It turns out that she was involved in running an Olympic team had had spent 10 years researching diet impact on the body especially around rheumatoid arthritis and other muscle/joint issues etc…

She also said that she would not recommend a non active approach to recovery and that I should be as active as I can without going over the top of course. She actually said what I have always thought, you only get one life so you can sit and feel sorry for yourself whilst your life goes by or you can get on and do what you can. She wants me to undertake a light exercise programme that involves walking and swimming. Initially walking short distances and building up slowly but the key was it needs to be regular. Yes an element of rest for recovery is needed but as I thought, the muscles degrade rapidly when not in use and weaken adding even more issues. She told me about how she worked with Olympic Athletes who were recovering from injury and the approach is always slowly but surely rather than all out which would no doubt result in further injury

I didn’t get everything I wanted resolved and I need to contact her again to ask for my right foot to be examined as that has been a pretty constant issue. Once again she emphasised that from the cases she has dealt with everyone has made a gradual recovery but she could not predict the level of recovery or the timeframe. So I guess the investigation has begun and it may result in nothing being found which isn’t uncommon! But at least I would have been checked out

I’m still dealing with a bunch of symptoms still including what feels like increased weakness, some sleep issues again, burning muscles and joint pains. I just want my mobility and strength back, I can live with some of the other issues!