Thanks Emma x
Hi Sara,
I went to my appointment with my Neurologist at the Walton Centre today. She explained to me that I shouldn’t walk unless I am able to (which is hardly ever now) as I was pushing myself too hard trying to walk. So said I need to continue to move my legs while I am sat down and wait for my physio appointment who will give me the proper exercises. So just waiting for an appointment for physio now and am going to the CBT (Cognitive Behavioral Therapy) on the 26th of May.
Hope your doing ok?
Emma
Hi Emma hopefully you won’t be waiting to long for your physio appointment. I am good thanks just in pain and not sleeping as the pain is so intense. Just feeling fed up but I could be in a worse situation so shouldn’t complain.
Take care Emma xx
Hi Sara,
Poor you I hope you get your pain sorted soon it must be horrible!
Thanks I will let you know how I get on.
Take Care
Emma
Thanks Emma take care Hun xx
Hi Sare,
Thanks, I got my appointment letter through for Physio Therapy assessment next week (first session to be at home) so that’s good news.
Take Care
Emma
Glad you had some good news, think you need to see a light at the end of the tunnel xxx I received a letter today saying I’m not entitled to PIP although they understand I have a disability they don’t think I need any extra help. I’m not really sure what to do next as my GP said I can’t work in this pain. I would love to get back into work as I have never sat at home for this long, even when having my 3 children I was back at work after 5 months with them. Going to try and get an appointment tomorrow with my GP as my pain has been a lot worse the last few days with little or no sleep.
Oh well I have had my rant today haha I will speak to you soon, glad you are getting somewhere take care Hun xxx
Hi Sara,
Thanks hopefully it will be the start of getting better.
Sorry to hear you didn’t get the PIP I don’t understand why not when you have a disability that is affecting your everyday life! I think you can appeal against a desicion if you feel you should have been awarded it.I understand what you mean about missing going to work I get really fustrated and board sometimes as I miss being able to work but like you I am not fit enough to work. I don’t understand why you haven’t been awarded any benefits as you really can’t be expected to work in all of that pain! I hope your GP can be of help getting your pain controlled and hopefully hurry along the pain clinic. It might be worth phoning the walton centre and asking to speck to the pain clinic/consultant you are under to say the pain is getting worse and maybe they might hurry the appointment along for you. It must be really hard having all of this and looking after your children at the same time. I have no children at the moment and am living with my parents so I can’t imagine how hard it must be for you.
Take Care
Emma
Hi Emma, sorry I am only just getting back to you. I have had my physio appointment for me knee with has eased things a little with that and my physio thinks my limp will get better the more physio I do so that’s a good sign. I am also due to go back my GP today so might get more info on the pain clinic. Keep intouch and take care cheers Sara. xxx
Hi everyone this is my first post here so please bear with me. I have been experiencing several neurological conditions over the last 12 months. Symptoms have ranged from stroke like symptoms to muscle weakness in arms and legs, severe head aches mood swings, problems with speech ,cognitive thinking, dizziness, balance, bowel control, palpatations and more all of which sound very familiar. I have had two MRI scans the first one of which revealed vascular lesions and the second one evidence of demyelination and inflammatory myelitis, thus resulting in having a lumbar puncture two days ago on the 24/5/16 my birthday. The lumbar puncture it self was awful and I know people have had different experiences of it, but it is one I quickly want to forget. So over 12 months down the line I have had all the tests still have all the symptoms but as yet no answers as to what may be wrong with me and hopefully now the lumbar puncture will provide those answers. During the whole time it has been an incredibly frustrating period waiting to get answers and it has put a huge stress not only on me but my wife and family. My symptoms haven’t subsided at all and if anything some get worse and new ones appear!! I feel now I need to share my thoughts with others who may be in the same boat as me or have experienced similar occurrences. Its the not knowing that’s frustrating for me.
Hi Kevin,
I just wanted to say welcome to the forum sorry to hear your not doing well at the moment.
I don’t have MS but do experience some of the symptoms you have (most severe is leg weakness for me but I have other symptoms too).I had an operation in July 2014 to correct my Arnold Chiari Malformation of the brain (which is a brain abnormality) which stopped my terrible headaches and my leg weakness improved for a few months but the leg weakness came back worse then ever so following all clear scans including MRI they diagnosed me with Conversion Disorder with Functional Leg Weakness also know as Functional Neurological Disorder which I have now started CBT and Physio for. I also experience bowel problems as I have a prolapsed bowel and IBS so I understand your frustration with the bowel issues too.
Sorry to hear you are having such a tough time it sounds like you might have MS from your MRI results? But I am not a Doctor so your in the right place seeing a specialist who will give you the correct diagnoses. I understand how you feel it’s horrible not knowing whats causing your symptoms and having to deal with all of them symptoms everyday! What a horrible thing to have to have a lumber puncher on your birthday too.
I hope you get your results back soon and then hopefully get started on treatment to improve your symptoms.
Take Care
Emma
Hi Sara,
No problem.Good to hear you have seen the physio and that it has helped a little. Hopefully it will continue to help. I hope your GP appointment went well and that he/she can move your pain clinic appointment along.
I got my first physio session on Monday they have given me some weight bearing exercises and a sitting down exercises DVD which I start just by doing the warm up I see the physio again next week. I also went for the CBT Assessment yesterday at the Broadoak Unit at Broadgreen Hospital they have given me breathing exercises to do and are refering me to the community waiting list to start therapy.
Take Care
Emma
Thank you for your kind words Emma. I know there are a lot worse things than MS but I am prepared for worst case scenario I just need to know what’s wrong and then hopefully I can then manage whatever it is as best I can. Up until now I have had no treatment or medication of any kind so for me the sooner I know the better, it’s just very frustrating. I totally sympathise with your issues and it’s so nice to be able to finally talk to someone who understands how I feel and knows what I’m going through.
Take Care
Kevin
Kevin keep us posted to how you get on, take care Sara.
Hi Kevin,
Your very welcome. What your going through must be so hard I hope you get a diagnosis and some treatment soon. Let us know how you get on. Have you got a date booked to see your Neurologist?
Take Care I’m thinking of you.
Emma
Hi I already had a follow up appointment arranged for beginning of July but nothing else arranged as yet unless I get my LP results back before then. Had my LP on Tuesday of this week my birthday and stupidly went back to work the following day as I felt ok apart from a little back pain , but as warned the headaches from hell kicked in yesterday!! Luckily it’s a bank holiday weekend so rest for me till Tuesday. I’ll be sure to keep you up to date.
Take care
Kevin.
Hi Kevin,
Good you have an appointment arranged for July even though it’s a while off. Sorry to hear about the bad headache. Take it easy I hope you feel better soon.
Emma
Hi Kelics,
Welcome to the forum.
Sorry I can’t be of much help to you. But I can understand your frustration and stress. I’m 25 years old and am unable to walk most days so have to use a wheelchair most of the time and occasionally use the walker to take a few steps but with great difficulty. I have been diagosed with a Arnold Chiari Malformation of the brain (showed up on MRI) which I had surgery for in 2014 and have recently been diagnosed with Conversion Disorder with Functional Leg Weakness so have just started physio and Cognitive Behavioural Therapy (just the assessment so far) as all of my tests came back clear.
I hope you get an diagnosis and some treatment soon. I understand how much of an impact these symptoms have on our daily life.
Take Care
Emma
Hi Kelics,
Thanks I agree we should stay positive.
Sorry I took so long to reply. I had a terrible migraine yesterday so had to rest alot and thankfully It has gone now. This warm weather we are having doesn’t help!
Take Care
Emma
Hi,
I was just wondering how everyone was getting on? I hope your all ok.
I am continuing with the physio and have made some small improvements with my posture but walking is still very bad. My prolapsed bowel is much worse and painful now and am waiting to see the surgeon next mouth.
Emma