So…got I got sent a copy of a letter my new neuro has sent my GP. Some stuff in there I didn’t understand like “give-way weakness” and non-organic, so I looked it up, wish to god I hadn’t now!! Those terms all point to “faking symptoms” or a “physcological” disorder in which symptoms are imagined (Conversion?).
It seems He has come to this conclusion without doing follow up MRI etc. I just don’t belive it!! What is the point???!! I simply cannot understand how/why these symptoms can be all in my head, especially when my 1st MRI does show lesions and demyelination!!!
I have to see the neuro tomorrow to discuss further tests, I am dreading it, He’s probably gonna sit there and tell me there;s nothing wrong with me except a mental illness. Don’t think I can take it.
I’m angry, upset, humilliated and lost, I have never convinced nyself I have MS, have always had an open mind, I know it could be a number of things but now no one is ever going to belive me!!! I just don’t know what to do. I wasn’t "depressed before, I chiffin well am now!
Sorry had to get this all off my chest otherwise i’ll just sit here and cry.
Aww bunny, I feel your pain. Lots of virtual Hugs coming to you. I once had a letter that sounded exactly the same, I too googled the term ‘give way weakness’ and spent all day regretting it. I was given a dx of FND at the time (no MRI at this point), I felt like everyone was against me. I don’t understand why he says this when you have lesions showing on your scan? Even if it’s not ms, there had to be some explanation? It’s good that your seeing him again tomorrow, not too long to stew on it. Make sure you get him to explain his ‘observations’ to you fully, Can you take anyone with you for support? I have found that neuros play nicer when there’s witnesses - sad but true. I wish you the best and hope you get some answers, stay strong. Lx
Thanks Leora x My hubby will come with me. i do fully intend to question the neuro carefully about anything he suggests i might or might not have. having read about conversion disorder evrything points to the symptoms following a very stressful event in someobe’s life, well when all this kicked off, there wasn’t one, life was just normal and i’m really not someone who dwells on things or gets stressed easily, so it just doesn’t add up.
i had 2 spinal surgeries in the couple of years leading up to this but i was doing fine and the surgeries were not emtionally traumatic at all.
Guess I just have to wait until what he says tomorrow, although he mentioned these things in the letter he did say that he wants to do more tests, so hopefully that will happen. I’m more than happy to have MS ruled out but i don’t want to be brushed aside with an assumed mental illness,
Oh that’s good that your hubby is coming with you. Also promising that he still wants to do more tests, presumably he’s still looking at all differentials then? Do make sure you question him, I used to be scared too bit now anything I don’t understand I stop and recap! Should have said I went on to have the MRI and got a dx of ms, but it wasn’t easy! Again, best of luck xx
Your message really made me think. It doesn’t sound like you’re making things up at all, and I don’t think I’m making my symptoms up at all either. However, do I think it’s possible that I ‘gave way’ a bit when my doctor tested my arm strength the other day? It’s quite possible. After all, we both want someone to take our symptoms and their serious effects on our lives seriously, and, when they do the strength tests, we can’t help but know what they’re looking for. We therefore might subconsciously play up to that. BUT that doesn’t make the symptoms we’re suffering from any less real. If you see what I mean.
I’d hope that any neuro worth his/her salt would realise that possibility. The stresses and strains of trying to get symptoms like this seriously (especially when frequent doctor visits make us feel like we might be seen as hyperchondriacs!) must take their toll psychologically. Again, though, that doesn’t make all the symptoms we experience fake: it just means that it’s possible that some are psychological. Does that make sense to anyone else?
I’m so glad you’re going with your husband. Go in with a list of all the symptoms, tests and results and as close as you can to a timeline too. It’ll help as something to refer back to if you feel overwhelmed - and might particularly help your husband if he has to step in.
Neuro already has a copies of all my previous tests and reports and a symptom kist, he wanted a week to go through them to see what he could find. His letter to my GP appears to be before he has gone through any of them as he does say in letter he will now be looking thru my previous results.
So his observations to my GP were purely based on the physical exam.
I take your point about about the strength test, hadn’t thought of it like that. I know i didn;t consiously do anything just did what he asked and assumed at the time what he saw was normal as it felt normal to me.
Hey ho, we’ll see what happens tomorrow. Its not someting any of us have control over really.
Oh bunny, that is horrible. Completely understand why you’re upset. I fear drs will tell me the very same thing. GP being very dismissive Also, it’s really not nice to send you a letter that partly makes no sense and makes such a judgement of you. Someone should have talked with you and had the courage to share this face to face and let you air your own response. Can you follow up any way to have the conversation and question it, explaining you werent anxious etc? It’s horrible to feel someone thinks you created your symptoms- and the fact is they are still not telling you how to treat it! Thinking of you and hope you find someone who will hear you and make you feel sure they are confident it’s nothing to be concerned about and how to make the symptoms go away one way ot abother
I was dismayed to read your original post (still am), but this suggests that you haven’t run out of road yet. I think this is time to go into full Warrior Princess mode for tomorrow- calm under fire, relentlessly logical, refusing to get flustered or be ground down. With luck, he will have been through the previous results by then - if not, insist! It is good that you are taking back-up with you. Husbands can be very useful.
NHS by any chance? Take your own list anyway!! was actually in hospital in severe pain when tests came through that confirmed that I had (antibiotic resistant) Shigella (evil bacteria I picked up in India - after just a day or two!!) and no-one checked the records, so I got sent home with a dismissive IBS diagnosis, even as I cried in pain and vomitted. Since then I’ve had little faith in the checking ability of hospital staff and have always taken my own records. Shouldn’t be that way, and I know some doctors are great, but it’s worth being on the safe side. I know the neuro you’re seeing requested your test results and history, but I’d still want to have my details in front of me, just in case.
Am I paranoid? Yup - doesn’t mean the docs aren’t out to ignore me Hee hee.
Hi bunnythecat your post caught my eye, as I too have this diagnosis. I however had no lesions on my scan but also had nothing traumatic happen to me before all this started. Thank goodness they are sending you for more tests though, hopefully you will get answers soon. I also read conversion disorder is quite rare. I’m on a closed fnd group on fb and the amount of people diagnosed with conversion disorder is unreal and they have some awful symptoms, really close to ms or other neurological diseases. I wonder if they just give this diagnosis out when they haven’t yet discovered what’s really wrong. Being labelled with conversion disorder as just made me feel even more in limbo. Hope you get answers soon, horrible being poorly and made to feel it’s all in your head x
I got told I’d stress/post natal depression idjist had a baby and left my husband. Psychiatrist said I wS highly anxious but considering I couldn’t walk, write or use my arm wS to be expected. Then get dx with with a one off episode triggered by having a baby. But then another huge relapse and the neuro said when I said do I need another scan she was like we know more than enough from the last one. So they were waiting for it. But I really like my neuro and she always gave me follow up appointments so Ido trust her now that they are watching. Though I wish she’d said thry thought it could be ms as my family were determined it was a one off and yhr doctors had said it. I can’t blame them for hoping lol. Good luck with the neuro. My advice condense ur questions so you know exactly what u want to know and use it in a structured manner. I’d an appointment last week and didn’t take my list and didn’t get half the things I wanted to know. X
Morning all, thanks for all your responses, made me feel better
CC, this neuro is private, all the other consultants I have seen who have given various dx’s have been as well.
I think there are a couple of things they will have to consider before determining this is a Conversion disorder, the lesions and demyelination, the very unusual results of the VEMP tests that are well documented and the fact that it is documented that I had a CSF leak from my spinal column during surgery. The tests etc can’t lie, i had no control over any of these things.
I have re-read the letter a couple of times and it appears to be just an update to my GP of what neuro found at physical exam, and neuro has said he wants to make further investigations and that he hadn’t at that point reveiwed all my previous test results and scans. I think I need to take comfort that he still wants to do that so however I have interpreted the letter it doesn’t seem to be the end of the road yet.
It’s just a horrible feeling to think that maybe I do have some kind of mental illness. My gut instinct is that I definately don’t and I know 100% the symptoms are completely real and not imagined and were not triggered by any kind of stress. So yes, Warrier Princess I will be, i’m not going to be brushed off yet again. Any anxiety I have has developed since being on this road to dx where i’m just pushed from pilar to post and told different things each time. I defy even the sanest person to cope with that without getting at least a bit anxious.
Seeing the neuro at 7 this evening, not looking forward to it but gotta do it and push for further tests if he doesn’t offer them.
I’ll let you know tomorrow how it went, thanks again all, I really appreciate the support. xxx
there seems to be a great deal of misdiagnosis of conversion disorder, if you read the DSM manuals for diagnosis, they clearly state it lasts on average 2 weeks and one fifth go on to have a second bout. It is not an ongoing disorder at all, so if you have these symptoms for longer than 2 weeks they should be breaking their necks to investigate it. Let me guess though, there are far more women with this diagnosis? Because in m experience for myself and that of the service users I hve come into contact with as a mental health worker, the first response women often get is doctors assuming it is anxiety based… women should just play with kittens and make their husbands tea… JOKE!
hi bunny the cat,i am going through this aswell,i had 1st neuro appointment yesterday.
the 1st thing the neuro said to me was my doctors have made a big fuss about nothing,i was told i had cysts on my brain,swelling and some sort of leakage,he said all i have is 3 white spots and showed me the images of my brain scan.
he then done wrote down all my long list of symptoms and everytime i mentioned 1 he would say it doesnt sound neurological and he doesnt see anything wrong with my brain…i do have to go and stay in hospital for a few days whilst i have a lumber puncture and other tests done but now after all his comments its left me feeling gutted and like a fraud again because he mentioned stress,i cant be going through all this again people not believing me,i do get stressed when i’m in pain,i get even more stressed when i’m in pain and it feels like everyone thinks its in my head…
xx
Also, it’s really not nice to send you a letter that partly makes no sense and makes such a judgement of you. Someone should have talked with you and had the courage to share this face to face and let you air your own response. Can you follow up any way to have the conversation and question it, explaining you werent anxious etc? It’s horrible to feel someone thinks you created your symptoms- and the fact is they are still not telling you how to treat it! Thinking of you and hope you find someone who will hear you and make you feel sure they are confident it’s nothing to be concerned about and how to make the symptoms go away one way ot abother