Hi Crazy Chick,
Thanks for your message.
Yes I two think it’s related to my Chiari Malformation but the Neuros think otherwise. I have read on other forums that people who have the surgery then experience a reacurrance of their symptoms months or even years later. I thought it could be either this or possibly MS but they have ruled that out with the tests.
If you don’t mind me asking what symptoms is your friends experiencing and are they the same as before the surgery?
I asked my GP today if I could have a third opinion but he said that seeing as 2 neurologist’s have agreed it’s conversion disorder then I don’t need a 3rd opinion which is so frustrating! I go back to see the Neuro Surgeon again in August this year so I will defo mention it to him again then. In the meantime I am getting referred to CBT and Physio but it sounds like they both have a long waiting list. If these therapies don’t help improve my symptoms then I will be going back to my GPto ask again for a 3rd opinion.
Emma
Hi Sara,
Did you manage to get anywhere with your consultants secretary?
Take Care
Emma
Hi Emma.L
she is off for a week and the lady I spoke to say that I will just receive my next appointment by post will be a couple of weeks, thanks for keeping in touch and hope you are feeling ok.
take care and speak to you soon, I will let you know any updates.
Hi Sara,
That’s frustrating isn’t it! Maybe you could try phoning back in a weeks time when the secretery is back in? Thanks for keeping me updated.
I’m still having a bad day today, thanks for asking.
Emma
Hi Emma, sorry to hear you are having a bad time at the minute, take care and keep me updated.
Cheers Sara.
Hi Sara,
Thanks I will. I hope you feel better soon.
Emma
Hi Emma, just to let you know I received an appointment for the 25th of this month but it’s The Epilepsy Clinic Walton Centre. This has totally confused me as this has never been mentioned to be before. I am going to call the secretary tomorrow to see if she can tell me anything. How are you feeling?
Hi Sara,
Good to hear that you have now got an appointment booked. It does seem strange that it’s in the epilepsy clinic. It would defenitly be worth attending it so that hopefully you will get a better idea of what’s causing your symptoms and hopefully put a treatment plan or further tests in place. Good luck for your appointment and remember to tell him/her all of your symptoms even if you don’t think there related. I find it helps to write a list of questions to take with me for my appointments so I don’t forget anything.
I’m not any better to be honest but thank you for asking. I am still unable to stand or walk for 5 to 6 days in a row (so have to use my wheelchair) then on the one or two better days I am unable to walk unaided but can walk with my four wheeled rollator for support. I have been placed on the waiting list by my GP for Physio Therapy and Cognitive Behavioural Therapy to help my Conversion Disorder with functional leg weakness. I will also get a follow up appointment with my Neurologist at Walton in 2 months time.
I am also still waiting for a follow up appointment for my prolapsed bowel and decending pelvic floor issues which may require surgery again.
Take Care
Emma
Sorry to hear you are still having problems, take care of yourself and I will be in touch soon.
sara.
Hi Emma,
I had my appointment and my scans are clear, the Neuro is sending me to see the pain team in The Walton Centre,so I will keep you updated not sure what will happen there. Hope you doing ok at the min xx
Sara.
Hi Sara,
Good to hear your scans came back clear and that you are being referred to the pain team. Haven’t they given you any ideas of what’s causing your symptoms? Will you get to see the Neurologist again? Thanks for keeping me updated.
I am not doing very well to be honest as my leg weakness is getting a lot worse and I no longer have good days when I can walk unaided. I do still manage to get 1 better day a week when I can walk with the rollator for support as I was still unsteady. My GP has referred me to Physio Therapy and Cognitive Behavioral Therapy (CBT) but am still waiting for appointments for both. The first CBT I was referred to said they don’t deal with conversion disorder so I have now been referred to secondary services for CBT.I am also waiting for an appointment for my follow up with the Neurologist at The Walton Centre too. Thanks for asking.
I also asked if I could have a 3rd opinion from a Neurologist at the Walton Centre but they have said I don’t need one as two Neurologist’s have already said I have Conversion Disorder (also know as Functional Neurological Disorder) and that all of my tests where clear. I am going to do the Therapies and if they don’t work I will ask again.
Thanks
Emma
Sorry to hear you are getting worse, hope you get sorted soon.
I am not sure if I go back to see the neurologist there I felt as though he was behind and just wanted to catch up on his appointments. I am just going to wait until I attend the Pain Clinic and see what they say to me.
The Neuro said he thinks the problems are from a herniated disc bulge and that’s why I am experiencing all these other symptoms. I am not to sure if it’s just a cop out because he’s not sure what’s up.
I am also attending my face to face appointment for PIP next week not sure how that will go. Do you receive PIP? I’m a little frightening of going as I’m not sure what to expect, I have never had anything from the government but we are really struggling with me not being in work.
Regards Sara
Hi Sara,
Thanks I will let you know if I hear anything. I am also still waiting to see the bowel surgeon for my Prolapsed Bowel to see if I require (which looks likely) the surgery again to fix it.
I think that’s a good idea to ask when you attend the pain clinic. Sorry i’m no expert in Herniated Disc Bulge so don’t no if that’s causing your symptoms or not? Make sure you keep asking your doctor and specialist as it could be that and or something else?
Yes I have been awarded PIP (Mobility and Daily Living component) and ESA (I am in the support group where I don’t have to look for work as my health is too bad) as you can claim both benefits at the same time. To claim the ESA you would need to ask your doctor for a sick note and have to keep providing them when they run out. I had an assessment for the PIP they basically go through your answers that you wrote on the how your disability affects you form and you can add to it at the assessment by answering what medical conditions you have (you are best to tell them about all of your health issues and symptoms). I found the best thing to do was to tell them how much of an impact your health conditions have on your daily life (including losing your job and that you are unable to work due to your symptoms). I hope this helps you that’s what I did anyway. It’s also good to take any evidence (photocopies so you can keep the original) with you e.g. hospital letters, letters with your diagnosis and possibly a letter from your work if you have one saying you lost it due to your health condition?
Good Luck I hope all goes well at your appointment and assessment.
Emma
Thanks Emma I was just worrying about the interview with what people have said about it, but it sounded ok from what you said. I am due to go back my GP Friday so hopefully she might have some info on how long I am likely to wait to go to the pain centre. I have filled the forms in for ESA but was told I am not entitled to it as I have not paid enough NI and my husband works so currently we are just living of his money and Tax Credits as we have 3 children. Hopefully you might get some answers to your surgery soon. Take care and I wil keep you informed on how I get on cheers Sara.
Hi Sara,
Yes it went fine for me and i’m sorry to hear you wasn’t able to claim the ESA. I do know that it can take a long time to get the decision for the PIP. I made my claim the end of December 2015 and only got awarded it this month. Can you appeal the decision for ESA? Just a thought. I live at home with my parents and don’t have any children or a partner at the moment so am in a different situation.
Good luck with the interview and GP appointment.
Thanks
Emma
Hi Sara,
I was just wondering how you are getting on? I hope all went well at your PIP interview and with your doctors appointment. Have you got an appointment date for the pain clinic? Sorry I took so long to ask.
I have got an appointment with my Neurologist next week at the Walton Centre and go to the bowel clinic in June at Aintree Hospital. I have also been given a date for the Cognitive Behavioural Therapy near the end of this month but am still waiting to get a date to see the physio. At least things are moving now I guess, after my Mum phoned the secraterys to say I needed to be seen.
Take Care
Emma
Hi Emma, Glad you seem to be getting somewhere and hope you get more help for your pain. My interview went well with the PIP lady she was very nice,but she warned me that it still might be a while until I receive anything in writing from them.
My appointment for the pain clinic is going to be a while as the doctor said its about a 10 week wait, So I will just have to wait it out, I have been put on more meds for arthritis in my knees and waiting for a letter from physio. Keep intouch and take care xx
Hi Sara,
Thanks I will let you know how I get on. I am still waiting to hear from the Neurophysio too.
Good to hear the PIP interview went well I hope you hear from them soon. It took a few months for me to get the decision too.Good to hear you have been put on the waiting list for physio sorry to hear there is a long waiting list though. I hope you get the physio and pain clinic appointments soon.
Take Care
Emma