Okay,let's throw this out there!Anyone have any type of viral episode just prior to their problems?
Wondered if anyone had any symptoms of a virus or infection within a week or two of their neuro problems starting?
Hi my experience was different I had a operation on my shoulder.within 3 weeks I lost my grip in my hands.within 6 months I was in a chair.i was always sensitive to medication but 3 things could have changed it 1) I was given a steroid injection in my shoulder 2)had twice the dose of anesthetic 3) I had to sign for a injection at. The last minute in wihich I had no idea what it was all I was told its to relax your muscles.i had no chance to consult any body about it.another issue was I had to have double the does on anesthetic which was not like me.when was comming around I felt different I felt terrible pain down both arms and across my l chest I was in agony they said it would go but it never did it got worse and my body has change.3weeks before that I was in the Dominican on my honey moon.
Jeez Juliet what a horror story.Something gone radically wrong for you there.What further tests have you had and what medical help are you getting? x
Hi there I have had basic testing could not have lumbar puncture because of my condition my back is always stretching and pulling into spasms could not get any thing because of how I was treateted this had a conflict on everything I have only just got a social worker I have a solicitor dealing wit my case 1 neurologist said I made sound like animal noises its been a living hell iam only just getting help now the most they offered me is phychotherapy which in one of many insults. Many thanks. Julie xxxx
I had a brain surgery followed by a serious spinal fluid leak. With in weeks onset of movement disorder. Very possibly was an infection in my spinal fluid as I nearly died, had a lumbar drain in for a week, followed by a second surgery to correct the leak.
Wanted to add that in my recovery after the brain surgery something went terribly wrong. I too was in agony, trying to grab a nurse any nurse that would listen. I was losing spinal fluid from the surgery site, it was gushing all over. They kept telling my family I was having problems in recovery, but never said what. I was in there 12 hours. When my family finally seen me they said I was covered with spinal fluid all thru my bandages and all over my face.
Thanks for the additional background Cathy -sadly another horror story of medical disaster-and they say its all in our heads ! x
I know angelite, It is so very sad. Makes you so leary to get the help we so desparately need. Keep looking for a good Dr. Maybe if enough of us are seen, at some point something will be done about it. My new Dr. is such a blessing, but they are far and few between. God Bless, Cathy
Yep. I just had a regular bad cold and then a couple weeks later the movement disorder started. Interestingly my boyfriend had the same cold and got tremors in his arm for a few days and then it resolved for him. My mom had the same cold and had numbness in her leg for a while and then it resolved. One theory by a doctor was it was a demylenating virus coupled with a B12 deficiency which had left the myelin brittle.
Thanks Els-you've certainly given me food for thought!How are you now and has the B12 deficiency been resolved?
The B12 injections helped me to regain my strength and increase my energy. Still dealing with other FND symptoms though.
This is almost identical to what happened to me! I was flat out for almost a week with the flu and then my symptoms just became crazy bad! It was then found that my B12 levels were very low. I've been receiving the B12 shots and don't feel as fatigued but I'm still getting exhausted from doing the simplest of tasks. I can't make it through the whole day without having to stop and nap and even that doesn't really help.
Yep. I had Pleurisy really bad. It lasted 20 weeks overall. It was back when the swine flu thing was on the go. I was still working at the time and had to give a presentation to a bunch of seniors, one of which had flowing in that morning from Indy to Derby UK. 24 hours before the news had been reporting that they suspected it was coming in from the US and to be aware of people newly arrived with cold or flu like symptoms (this was a very short lived idea but was as reported at the time) Well sure enough there she was coughing and sneezing and apologising and there I was sat right next to her. I didn't and still don't get hung up on scare reports and take them with the contempt they generally deserve, but the next morning I felt like hell and had what felt like a bad dose of flu (which I recognised from being hospitalised with it several years before). Reluctantly I got on the phone to the GP surgery to say "I'm sure this is a waste of time but I was sat next to this American lady who very kindly sneezed snot all over me yesterday and now I feel achey all over, hurts to breathe, very very hot..." etc. After a good but nervous laugh the receptionist said I best talk to a doctor and he duly got the Department of health on the phone and I was cleared of swine flu but told they suspected that the chest pain that made it hard to breathe was a heart attack so off to hospital with you. Why this is important is because I got all the blood tests and close examination within the first 24 hours and it showed up Pleurisy.
Well over the 20 weeks in which I developed pneumonia and ironically caught swine flu via my laptop keyboard that I sent back to the office to be unlocked and updated by my line manager. 12 hours after turning it on and using it I had swine flu which was tracked back to the keyboard. So I had a right basin full of infection in 2009 and because I was already a wheelchair user and not able to exercise sufficiently, the lungs didn't heal properly and so I had many reinfections over the next year or so.
I retired on medical grounds in late 2010 and my first symptoms that I knew of were early 2011. Having said that I appeared to have problems earlier than that. It turned out I was having absence attacks for some time where I would perhaps be talking, would shut down for 5 minutes or so and would start up where I left off. For me I just blinked as I remember it but for everyone witnessing it I went unconscious for 5 mins and in a brilliant piece of living sitcom nobody said anything about it to me because they thought by my carrying on where I left off that I must have known and not want to mention it! Fantastic... in fact you can't really write comedy like it and get away with it
Anyway, eventually the absence attacks turned into full blown non-epileptic seizures and with them came a host of issues with memory, speech problems, sudden inability to read more than a few sentences, lack of concentration, mood swings, major headaches where before I rarely got headaches and many other neurological/mental health issues. It didn't stop there though because I also had physical manifestations as well like bowel and bladder problems, sight issues, dreadful cramp attacks in my legs arms and hands. At one point they were sure I was having kidney and liver problems and as if that lot weren't bad enough I developed deep and very wearing fatigue to the point of being unable to feed myself. All this made me feel like a nut case and like a hypochondriac and the GP was finding it incredibly difficult but never once concluded I was making it up.
It mentioned earlier that I already used a wheelchair. Well that was a kind of saviour of the situation. Many years before I had had a spinal injury that had required repeated spinal surgery and as a response to one operation I was sent for hydrotherapy. I found it incredibly useful, but was always really badly fatigued. For example I would have the session on Friday and be wiped out until the following Tuesday. It was this that prompted one hydrotherapist to say the only patients who they saw who got as fatigued as that were MS patients. Well from that moment without prompting, I had five other people who mostly were unaware of each other say that my symptoms were like a relative or friend who had MS. When I reported that to the GP it started a chain of events that saw about six months of tests and referrals that ended with the diagnosis of FND.
The link to the viral illness had always made a lot of sense to me until very recently when I was referred to a specialist in FND and Non-epileptic fits. I saw him a month or two back and after a marathon interview in his clinic, he explained that based on my history back into childhood it was likely I have always had FND. That the latest thinking is that it is part genetic and part environmental. My childhood was a difficult one that included family problems and amongst other accidents were a major burn to my left leg which left me close to death at age 9 and needing to relearn to walk after all surgery was completed. I then had unexplained fits during my teenage years which I don't remember a lot about but I am told by my mother that they were very much like the ones I have now. Then in adult life I have had many traumatic events such as two failed marriages, two long defined periods of illness, a conflict situation that left me with PTSD which I am still waiting for help with and a bunch of quite bad rejection experiences due to my disability. All of these he says are classic markers of someone with FND. Not all, but a sizeable number when reviewed apparently have these serious traumas as a child and carrying on into adulthood.
There is much more to it that I haven't the energy to talk about today, but I have to say that having had that appointment with the specialist I came away with a full diagnosis that made complete and total sense to me for the very first time.
The main issue I think is that FND is a devastating illness and we are conditioned from childhood to expect to go to the hospital and come away feeling better. But in the case of FND it is such a newly identified disorder that the answers are just not there yet. Consequently for those of us trying to live with an illness that itself sets out to cause mayhem, confusion and a seemingly downward spiral in ones otherwise ordered life, it becomes almost an obsession to find answers that in reality aren't there yet. I don't have any doubt in my mind that provided there is a change of government in the UK in May which leads to a system that doesn't seek to harass, abuse and destroy the already desperately difficult situations we try to cope with, that I will live to see a treatment for this awful condition. It is very hard for everyone at the moment, but in the UK we have the added pressure of a government that has systematically persecuted the most vulnerable people for its own ends. I don't know about the rest of you in the UK (other than what I see online and in the less degrading press) but I have found that my treatment at the hands of Iain Duncan Smiths vicious regime at the DWP (Department of Work and Pensions) and the disgusting way I was humiliated and treated (though 'treated' feels like entirely the wrong word because it conveys a suggestion of help or care that was totally lacking in the person who pretended to assess me at my ATOS assessment) has made my condition far worse than it should have been. Had I the energy and the money I think I would pursue redress through the courts for what their policies have done to me and clearly many others. I certainly will never forget or forgive the Tories over these cuts. But I digress.
I need to finish here as my energy is failing fast and my dictation voice is waining due to a cold (like an H.G.Wells martian I am floored by the common cold ha ha) but I think that the best advice I have been given is to set initially easy and achievable goals, reward those achievements in some way to mark success and to try to live differently. In my case I don't hear when my body wan't/needs rest and just like now with this reply, I don't stop until my batteries go flat or I reach the end (whichever comes first) So I need to try to take more regular rests amongst many other little changes to my lifestyle. But even in this it's bloody hard work being this ill. Which kind of makes the suggestion that the Tories and some parts of society have made even more hurtful in suggesting that if you are not "Hard working" you must be something else that is not even worth discussion. In my experience as someone who used to be a workaholic who worked silly hours, I have to say nothing I have ever done in my career has been as hard as just trying to reach tomorrow morning the time. Being ill like this is very very hard work, with no bonus to look forward to.
Sorry I have rattled on, but I have been a member of this community for several years but have stayed quiet in the background. This question on viral illness has been the first time I have felt I needed to contribute, found it a vehicle for telling others my story and more importantly have reached a point where I can click "Submit Reply". So "Hello to all" and here I go with that click...
Thanks and hello Ade.Asthma woke me up early(funghi season-I do not help myself as I am a silly smoker!)I too have been following this site in silence for a while-suddenly it just seemed like to the right time to speak.I have just got the email to confirm my twitter membership but am wary of going on-I think the pace might be too fast for me and I don't really have a clue what I'm doing any way!Maybe a small site is more my thing.
Another interesting and multifaceted story-it's like these viral episodes change our systems in some way,very subtly and not enough to stand out on conventional tests.I am still dealing with fatigue-it seems all out of proportion with my level of spasticity type symptoms-and my head gets equally tired which is a weird one!I was incredibly active before getting ill and it is hard to have to scale down activities/decide on priorities.However,I am highly functional compared to many and consider myself very lucky.I have learned to congratulate myself for the things I have achieved daily and not beat myself up for the rest I haven't managed.There's another day tomorrow(hopefully!)Priorities are pets,work,minimal housework-anything else is a bonus!If I do go out socially then housework will be binned!
By all means 'rattle on' when you get the urge and the energy!-take care x
I had a Tumor growing in my ear which thinned my temporal bone the bone in the skull around the brain , I didn't know until 3 years late but my FND started around the same time my Tumor was going .. that's the only thing I can think of that has cause my FND
I got swine flu (H1N1) in Feb., 2016, and then had FND set in on Feb. 23, 2017.
I’ve had a long history of viral infections. I had a severe flu when I was a child. I had a nasty bout with warts on my hands and feet when I was 12. I caught chicken pox when I was 20; I had fevers over 103 for several days. When I was 33, I got mono or adnovirus or something that had by temperature going between 96 and 102 every hour for over a month. And now, I have FND at 46.
The viruses are on top of severe arthritis (both hips replaced last year), gender confirmation surgery and a tonsilectomy at age 4, a broken ankle at age 8 and numerous problems with things getting in my eyes (a cat’s claw once and later a little fleck of metal), chronic hemmorhoids and lower back and neck problems since age 10. Oh, and I’ve been morbidly obese since 10 as well.
I’m just a magnet for trauma.
Our son always had problems with strep throat and then took his tonsils and adenoids. Then he got strep again not long after because half of his tonsils grew back.I know strep has caused health problems with people having it attack their heart to brain,he always has problems with his half tonsil , his throat will hurt and white spots appear, sometimes it will be strep and sometimes not even with the white one pockets and he gets headaches. Sometimes I wonder if that might be a triggers.
When your body kicks into Overdrive to fight infections, symptoms typically WILL worsen. It's like that every time with me, too. It's gonna be okay. Just remember it won't last forever
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