After 7 months of waiting, on Monday the wait was finally over, I finally got my appointment to see the Neurologist again. I made sure we left early and the one I care for said he wanted to come along with me for some support, so off we went. We were not far from the hospital and we were still quite early so we decided to pop into Tesco’s to get a few bits. I still wanted to be quick in there although the one I care for was really taking his time, I asked him whether he was going to have a fit. We got over to the hospital and the story was the same, he was walking very slowly although now he was starting to look a bit vague. I booked myself in and he sat down and I kept looking over, he seemed like he was about to go. I told the lady that was booking me in the he was epileptic and I thought he was going to have a seizure. I was advised to get one of the nurses should he do so and by the time I got to him he was in the trance before the seizure. I had to warn a few people nearby that he was going to have a seizure and one lady helped by going over to get a nurse as I was over him, making sure he didn’t flip about too much. The nurse came and by which time he was starting to fit, the whole room was pretty full and everyone was watching. Myself and the nurse were protecting him, she was in front of his chair and I was behind him. After his seizure, it all went quiet then a couple of minutes later, he had another one, this time, a lot bigger so we had to hold onto him pretty tight. By the end of this one there were more nurses about and they had called for some doctor’s also. The nurses thought it was his appointment today but I had to explain I was the patient, it was a right old palaver. The next thing they couldn’t get him to come round so they had to get a hoist to get him onto a trolley and out of the waiting room. So his timing couldn’t have been better, the appointment I had been waiting for so long had been disrupted by one of his seizure’s. We then had to go off to a room around the back and I had to answer all the relevant questions the doctor’s were asking. I told the nurse’s again it was my appointment today and how long I had been waiting as I didn’t want to lose my slot. After some time, tests and questions the doctors decided to cart him off to A&E and I could have my appointment and then meet him after.
I had my appointment with the Neurologist and by this time my head was all over the place by what had happened. I managed to get through some of my list of symptoms but then he took me into a room to do some general Neurological tests. I didn’t get a chance to tell him the rest and he told me he wanted to stop a couple of the tablets I was taking. Both are very low doses and suggested that I go on this new one and suggested I had some CBT for the anxiety. I didn’t get the chance to ask him what his diagnoses was as I was quite blank from what had happened although he seemed to suggest a pain disorder and a nerve related issue. I have since looked up the tablets he want’s to put me on and they are linked to one of the possibilities I thought I had. I am not best happy about this either as there are some side effects from these tablets which are not the best. I have decided to order some natural stuff which a friend mentioned some time ago and see if this helps in the first place. As I have mentioned before, I have started to get a lot of anxiety relating to taking any kind of medicine and the truth is there are side effects. I have been going through this for the last for the last year and it has really taken its toll on me but I want to fight it at the same time.
I have been doing a lot of walking recently and I have been feeling better for that, it’s a shame I can’t use my cross trainer right now. The last time I used it, I woke up with such terrible back pain I was considering calling an ambulance. The walking has been good and if I get my strength back up and some good results then hopefully I can use the trainer again. I have bought a little trolley also for when I go shopping, which takes the weight of the shopping and the stress off my body. I like to walk to the supermarket rather than drive as its good exercise and now I have my little trolley it will allow me to continue…
I really wish I could find more time to write on here as every time I come back I am annoyed at how long it takes for me to come back. I am just in a place at the moment where I feel stuck and can’t seem to move on. I have talked about my health issues for a while now and they are still ongoing to no avail. The hospital that I am under have been a complete nightmare and just sending me round in circles, just wish I knew what was going on. I talked about having my MRI scan before and not getting my results, all I know is the MRI was normal, that was it, no follow-up. I phoned the hospital and managed to speak to the Neurologist’s secretary and told about all my symptoms, that I would like a follow-up to find out. I went into the hospital and complained to PALS who also called the secretary, who got back to me with no avail. I now have to go back to my GP and get a new referral into Neurology and this has been going on since October. All of it has really started to get me down, the depression has been kicking in and I have been having panic attacks about once a week. Life has just been really hard lately and I am just trying to stay on top of it before it all goes down hill. I have also had dental troubles, had a failed root canal and then and a tooth removed. Since that my jaw has become inflamed and have a swollen temporomandibular joint which has been causing me problems. I just feel like I am falling apart, I ache all the time and my body seems like it’s telling me something is wrong. The fact that I tremble most of the time is not something that I am used to, especially when I lie down it’s really noticeable. Parts of my arms, legs and face keep going numb, I get vertigo, lower back and neck pain is enough to get anyone down. I just feel like my body is attacking itself at the moment which really isn’t a nice feeling. Oh and I forgot to mention the spasm’s I get, it can either be my muscles or I my nerves wriggling around, it’s just horrible.
So I guess I haven’t written much as I feel like I would probably just come on here and moan as the main thing in my life at the moment is my health. The only thing I have been focussing on and the main thing that has been taking up my time. I am still caring for someone although I am just letting him get on with things as he doesn’t seem to change himself anyway. I tried with all my might to help him but things just seem to go the way they always have done. Mind you, with all my health worries, it’s better having someone around rather than being on my own going through this… I think!?
About a month ago we did go back down to Kent for another weeks break which was nice. We were able to take the cats which is what I need and got a bigger room this time. The bigger room meant we had more room and the cats had more space to run about which was nice for them too. We went for some walks, cooked nice food, had some nice meals and had a log fire in the evenings. In fact it was really cold at that time so having the log fire was great and every night I really enjoyed getting it going and looking after it.
The weather being really dark and cold hasn’t been great either, it wasn’t long after we got back that it snowed and we had no sunlight either. Mind you the cats really enjoyed playing in the snow and I had a couple of walks with all my ski type gear on which wasn’t too bad. I have been trying to walk most days to help my mood lift and it’s also good for shedding a few pounds. I also got myself a cross trainer with my Christmas money and I have to say I am very happy with it. The good thing is, its low impact which means it won’t hurt my joints too much which I really need at the moment. I have used it twice and plan on using it as often as I can at the moment in the hope that my mood starts to lift a little. Well I finally had something positive to say, lol and wish I could come on here more to say positive things. Oh and another positive thing is, the fan page is doing great, over 1250 members now and growing. Lots of people in a similar place who are interacting and enjoying the posts so I am pleased about that…..
I look forward to coming back here and writing more positive things here soon.
I just wanted to say sorry to all of you that read this blog, I have been sooooo busy and just not had the time to write on here and feel rather slack. Well a lot has been happening to say the least, but here I am once again to bring you an update. The one that I care for was going through rather a tough time and I was busy looking after him. I was struggling to get to him eat, take his tablets or comply in any shape or form really. All my energy was consumed in mainly looking after him for some time to be honest and trust me it is draining. All of that now has been taken out of my hands and I am having some respite.
Myself personally, I haven’t been that well either, I started to have dizzy spells a couple of months ago, I would be standing there and the room felt like it was spinning. After a while it was starting to freak me out and I was also having like a crackling noise in the front of my head. I went to see my doctor and she told me I had a bad ear infection and put me on a rather strong course of antibiotics. After the second day the tablets were making me feel so sick that I had to go back to the doctors and see a nurse, she couldn’t help much but I did get a call back later. I was told to reduce my daily tablets, which I did, although I still did feel sick most of the time.
One morning I got up and was having my coffee as usual when most of my left forearm went numb, then the left of my face also started feeling numb. I started having a panic attack as it was freaking me out and once I stood up I noticed my left leg also felt like it was tingling. I waited about an hour as seen as it hadn’t gone away we decided to go to hospital and get it checked out. Initially when I told them the symptoms, I was seen straight away and not long before I had a bed. I must say that Queen’s hospital were rather good on this occasion and treated me like a patient rather than someone with psych problems! Not long after a stroke nurse came to see me and she told me that it was something they would need to check for due to my symptoms. And not long after that a doctor saw me and I explained everything to him and he did a load of tests on me including a CT scan. I had my scan and once they saw that it was clear then they were happy to let me go on the basis that I would go to see the neurologist at the TIA clinic the following morning. The next morning I went to the clinic and funnily enough I was seeing the same neurologist that treats the one I care for. Rather bizarre as we recognised each other straight away and had a little joke about it, lol. I once again had to explain everything that happened step by step and he asked me loads of questions. The neurologist told me he wanted to send me for an MRI but asked me to take a low dose of aspirin in the mean time. The following Monday I was booked into see my GP and had to explain everything once again to her about what happened. I told her about my symptoms and she said to me she thinks it could be and sounds like MS. I was a bit freaked out by then and she said it more than once but she said we would have to wait to see what the scan finds. So as you can probably understand I have been pretty down and also going slightly out of my mind with worry.
So as you can probably gather things have been rather tough for me, also having the long wait for this MRI and the possibility of what could be wrong with me. I was told the MRI would be done within a few weeks, turns out the wait is 4-6 weeks! I still get dizzy a lot of the time, my face goes numb and when I am falling asleep at night I notice myself physically trembling. Oh and loads of tiredness, I am always tired and just put that down to part of the depression before. All of that in itself tells me that something is wrong although I just don’t know the answers right now and it’s still a long wait. I am having my scan in just over a week and then the results take a further couple of weeks to come back. I have however been trying to keep busy and doing some light exercise every other day or some walking to the shops.
I have been busy looking after the PDSN page and glad to see we are over 800 members now and looking forward to reaching the first target of 1000 fans! The page is going really well and we have some great people on there; supporting one another and posting nice things. I am very proud of the people that use the page and make it their own and we don’t have any problems with people saying the wrong things on there either. And just one last thing, I have noticed that this blog has just under 2k hits so that makes me happy and encourages me to write on here a bit more often, wow!!