Hi, This is my first post on this website. I am currently suffering from a number of neurological symptoms for the last 3 years and which are getting worse. I started off with getting terrible headaches, dizziness and arm and leg weakness (2012) finally got a MRI scan done in July 2014 which showed I had a brain abnormality called Arnold Chiari Malformation of the Brain which I had surgery for in July 2014. After the surgery I ended up in A&E a few times with different medical issues including rectal prolapsed bowel surgery, IBS, Migraines, stomach Ulcer and Stroke like symptoms when the right side of my body went numb, heart was racing but scan was clear. Headaches have greatly improved since the brain surgery and the leg weakness stopped for about 6 months so I returned to work.
Unfortuntly the leg weakness (in both legs), arm weakness (both arms) and dizziness/lightheadedness happened at work it came on me suddenly while at work. I started feeling dizzy then my legs when weak so my colleges phoned for an ambulance. A&E did blood tests, MRI, CT Scan all of which where clear so discharged me that day. So I continued to attend my out patient appointments at the Walton Centre (where I had the Chiari surgery) where the neuro surgeon referred me to see a neurologist at the Walton Centre as he said the symptoms I am getting are not related to the Chiari as I have had the surgery. I have a lot more attacks of dizziness and leg weakness at work which resulted in me losing my job and another hospital visit this time to Aintree Hospital who did more tests all of which came back clear. The Occupational Therepy provided me with walking aid and equipment to help me. I am currently on ESA (support group) and am waiting to hear from the PIP.
The Neurologist has done MRI scans,CT Scans ,blood tests, neuro examination which showed weakness in my right arm, nerve conduction test. All came back clear. My current symptoms are severe leg weakness when I can’t walk or stand (have to use wheelchair where someone pushes me as I can’t push myself due to arm weakness) leg weakness lasts for 5 days then I have 1 or 2 days when I can walk then it all starts again. My symptoms are leg weakness (both legs), arm weakness (both arms), feeling very tired all the time, hands shaking all the time, concentration difficulties, memory difficulties, bowel issues, backache, tummyache and mood swings (eg feeling angry, sad, happy). I am wondering if my symptoms could be caused my MS. So if anyone knows what tests I will need to get a diagnose it would be of great help, thanks.
What I forgot to say yesterday was that when I get the leg weakness my legs go really heavy and I have great difficulties trying to move them. I also find that the more physical activity I do the worse the attacks are. When my arms get weak I can’t even lift my self up from my chair!
I was just wondering what tests did you have to rule out MS? Also what tests would I need to ask the neurologist for to rule out HSP? It would defenitly be worth asking the Neurologist about this thank you.
I was under Dr Larner at the Walton Centre in Fazakerley, Liverpool. He is unsure what is causing my symptoms but has refered me to a different Neurologist at the Walton Centre for a second opinion. I am currently on his waiting list and should get an appointment the end of February,
Although you have had blood tests they were probably not looking for the correct antibodies as there is no set tests as there are too many possibilities.
I suggest you ask them to do a test for Antiphospholipid syndrome; otherwise known as Hughes syndrome or sticky-blood; see http://www.hughes-syndrome.org/
This is just a possibility; I’m going on the bad headaches otherwise symptoms mimic MS.
I’m also perturbed at you losing your job. If they dismissed you owing to your health problems that is illegal? I suggest you contact http://www.equalityhumanrights.com/ with a view to taking them to tribunal.
Thanks for the links it would be worth asking about those tests thanks.I will have a look at both links thanks.
My rectal prolapsed bowel also reacurred so I am under the hospital for this also to see if I will require surgery again or not.
I was in a difficult situation with my employers as I was only on a temporary contract. They extended it to December last year but was unable to extent after that due to my health condition getting worse which meant I was physically unable to do the job and kept having a lot of absences and being sent home early due to my dizziness and leg weakness attacks that came on me suddenly and A&E stays (I was a Midday Assistant in a Primary School so involved a lot of walking). I really loved my job but the school had no choice in the end as I wasn’t fit enough to carry out the role. They have said that they will keep me in mind for future roles when my health is better. They where very patient and understanding of my illnesses. If it does get better?
Gosh Emma. That’s a lot to be dealing with. Can’t help you with advice, but can sympathise on the job front. I’m on final warning for the amount of time lost due to sick absences. In my case I have a zero hour contract, so if they think you are unreliable, they can just turn round and say that you are no longer required. Had a chat with my union rep about it. Advise was don’t tell anyone I’m ill & do my best to work through it. If I get signed off sick I’ll not get my job back & it will be really difficult to prove anything. Sometimes the legislation is worth diddily squat!
Thanks for your reply. I lost my job as I was only on a temporary contact to begin with they extended it for a few months but was unable to make me permanent due to my health issues, absences, ability to do the job etc. I’m sorry to hear you might lose your job sorry I haven’t got any advice to help you. I know that the Liverpool Council website or citizens advice might be able to help you but there is sometimes a charge I think? But i’m not sure really sorry. The problem is as with any condition it’s not your fault it’s happening and you can’t controle if it happens at work or not! so that’s not your fault, I understand how frustrating it is though.
If you don’t mind me asking have you got a diagnosis for your condition? I hope you manage to keep your job and find a why to manage you condition. If you do lose it due to your health make sure to ask your employer to put it in writing that you only lost your job due to ill health as it’s always good to have everdance to show the jobcentre, ESA, PIP etc.
No dx yet. I’m a college lecturer and our contracts are 12 month zero hour contracts (no idea how they get away with it). Come June, they can just turn round and decide not to use me. It will be impossible for me to prove anything. This is why union rep told me to keep my mouth shut - if they know I’m ill then they can easily dispose of me and get away with it. Just now though, I feel fantastic. Best I’ve felt since last summer.
I went to see the new Neurologist for my second opinion she has diagnosed me with Conversion Disorder with Functional Leg Weakness also known as Functional Weakness or Functional Neurological Disorder (FND). In this condition the brain has trouble sending messages to other parts of the body (in my case my legs) which results in a range of symptoms including fatigue, arm/leg weakness, memory difficulties, concentration difficulties, hands shaking to name a few of the symptoms as there are many more. A lot of these symptoms mimic MS but they don’t show up on tests (e.g. MRS , CT). So is diagnosed on clear tests and the symptoms you have.
The Neurologist is referring me for Physio Therapy and Cognitive Behaviour Therapy which are the two main treatments they use for this disorder. Some people improve, some get fully better, some people improve then relapse and some people always have it all the time. The aim of treatment is to improve the symptoms. Conversion Disorder can sometimes be triggered by a stressful event such as the operations and illnesses I have had.
So at least now I have a diagnosis but I am still struggling on a daily basis with a range on symptoms including the severe leg weakness (I am a wheelchair user for 5 or 6 days per week at the moment). So I am hoping the therapies will improve my symptoms.
Sometimes this condition can be wrongly diagnosed as they later turn out to be sometime else e.g MS. At least that’s what I have read somewhere I think?
Thanks for all your support and comments.
Emma
PS a good website to look at for this disorder is FND Hope.
Doing ok. They’ve found a hydromyelia in my neck, but think it’s benign and not responsible for my symptoms. I don’t completely agree as I think it probably explains a lot of the symptoms I hadn’t mentioned to the neuro as I didn’t think they were related, such as the numb/ temperature insensitive/no pain sensation patch of skin on the back of my neck. Strange, the way you can persuade yourself that some things are normal just because you’ve had them for a while!
On waiting list for nerve conduction tests, then neuro will be back in touch (probably by letter!). I’m going to see gp next week for another chat about the hydromyelia and tell her about the numb skin patch on my neck. Might even mention the one I have further down my back, again, perfectly over my backbone. Can’t believe I’d never thought to mention it before, but I really hadn’t realised that it’s not normal to have patches like that.
Sorry to hear you are still having symptoms and haven’t got a diagnosis yet.
Yes I would definitly keep trying to get more answers and see if some of your symptoms are related to your hydromyelia. Yes it’s always worth telling the doctor/consultant who you seen about all of your symptoms even if you don’t think that are related.
Even though I have been diagnosed with Conversion Disorder with Functional Leg Weakness I am still going to go back to my GP to see if I could have a 3rd opinion just to put my mind at rest that they haven’t missed anything else as MS can sometimes take years to diagnose. I’m also wondering if my symptoms could be related to the Chiari Malformation which I had the surgery for but the Neurologist and Brain Surgeon are saying it’s not related.
I’m going to give the Cognitive Behavioural Therapy and Physio Therapy a go (when I get the appointments) and see if they improve my symptoms.
I have previously posted on this site but not had many replies, would like some thoughts if poss from anybody who this rings true too.
I was in a car crash in August 2014 and few days later could not get out of bed with severe back and neck pain was given codeine and told to rest. I was off work for about 2 weeks then felt fine. Went back to work but was attending physio which seemed to help my pain. I stopped going in the Jan 2015 and since Feb/ March 2015 I have had tingles in my toes, hand, weakness in my leg, problems with swallowing, memory, blurred vision in 1 eye, cramping sensations all over. It end to walk with a little limp now and then and experience extreme back pain and fatigue if I have walked for 15 mins or more.
I have attended The Walton Centre to see a neurosurgeon who sent me for MRI on back, nerve conduction studies, MRI on neck these all came back normal. Then I spent a night in hospital as I has unexplained pains which stopped me from walking and they wanted to rule out corda equine syndrome. Soon after this I was sent to see a neurologist there who sent me for a MRI on my brain which I had mid March 2016 and just waiting on results but I have lost my job as my GP says I am not fit to do the job so can’t wait to find out my results as you can imagine it’s all I think of. I have had a couple of health professionals mention it could be MS has anyone else experienced these symptoms? Would love a reply can’t stand the waiting from the neurologist with my results does this normally take a month or two?
I just wanted to say hi. Sorry I don’t really have any answers for you.
As you can see from my post at the start of this link I first got diagnosed with a Chiari Malformation of the Brain. Which I had surgery for in July 2016.I had my surgery at the Walton Centre and am still under them for the Conversion Disorder.
Then in June 2016 I started to get symptoms again including severe leg weakness in both legs, fatigue, memory difficulties, concentration difficulties, hands tramour, arm weakness, backache and pins and needles/thingaling in arms, hands and legs. I have been diagnosed with Conversion disorder with functional leg weakness as all my tests came back clear.
Yes unfortunitly it does sometimes take a while to get the results back. You can always phone up your consultants secretary to inquire about them. Just phone up the walton centre and ask to speck to your consultants secretary.
I can related to losing my job too. I lost it due to my symptoms progressing and getting a lot worse so I understand your frustration. I also understand how worrying it is to have all of these symptoms and not know what’s causing them.
Thanks Emma.L just feel like I has something different each day and find it hard dat to day as my youngest is a very lively 3 year old. Thanks for the info about ringing the secretary for results I will do that know cheers.
Your very welcome I understand what you mean it’s really hard to cope with. I haven’t go any children so I can only guess how hard it must be to copy and look after yourself and your child!
Even though I have already been diagnosed with Conversion Disorder which probably is the correct diagnosis I am going back to see my GP to see if I could possible have a third opinion just to put my mind at rest it’s nothing else.
Yes me or my Mum have often had to phone up the secretarys to ask things (this can sometimes speed things up but not always).
I also have a prolapsed bowel so I think that’s relating to my backache but it’s always worth telling the doctors every symptom you get even symptoms you may have only had once. I know that if it is MS it can take a long time to show up on tests etc. I am not saying you have that as I am NOT a Doctor and only offer support from my own experiences.
HI I read your post the other day and was going to answer then something happened and I forgot lol. My friend in the states had Chairi Malformation and corrective surgery, and suffered with all kinds of weird things later. She was checked for MS, but in the end they think it is the after effects of her CM, leaving some sort of permanant nerve damage.
So i think its a good idea for you to just double check. You seem too forthright for CD diagnosis…I have met a few and you seem so different to them, and accepting the diagnosis where they never did. xxx