Well my other half had his first and last neuro appointment on Tuesday and left even further back with even more unanswered questions than before. We were in there for less than half an hour, he was asked why he was referred to neuro, his lifestyle, his job, home life, children, smoking, drinking etc all since he collapsed in October nothing prior. He was asked to strip to undies, did reflexes, looked in his eyes asked him to walk across the room then redress and return to his chair. With that he was told there is nothing neurological wrong with him, its all in his head, his tiredness is due to stress and not sleeping, the stiffness is due to not being active enough (he was getting stiff when he was active and working though), the worry of being off work sick is adding to the stressful life he apparently leads, the cold feet is due to poor circualtion as he being of slim build therefore more prone to the cold and the usual you should give up smoking and drinking (not that he drinks much anyway). Nothing has been explained about the spasms/jerks, jelly legs, burning pain, stabbing pain, sensitive feet, dead leg/arm feelings, confusion and cognitive fuzziness at times and such poor co-ordination that at times his legs and arms just don’t do what he is telling them to do.
He was told to stay in bed for a week then gradually add in getting himself up and washing, then dressed by himself, then add walking to the kitchen, then add something else etc until he is back to normal but it could take weeks (umm what does she think we’ve been doing for the past 4 mths!) and to take anti depressants if the gp gives them to him (thing is he wasn’t depressed until was told he’s basically doing it to himself)
Got an appointment with the gp next week as really not sure what to do now! Don’t get me wrong we are relieved we’ve been told its not ms but unsure how just by looking at him in his undies with no scans or longer term history she can say it and write him off her books so easily in half an hr when 2 GPs were worried it was, as well as an a&e consultant after gbs was discounted.
Really sorry about the long moan but what else could it be because I’m pretty sure depression and stress doesn’t cover his symptoms especially when he wasn’t depressed or any more stressed than either of us have been for the past 3.5yrs and life was on an up-turn and running smoothly!
I have I think every symptom of MS.I went on wed for the LP results and was basically told it is all in my head,there is nothing wrong with me,I need a social worker,pysio and a shrink.The neuro made me feel so small it was terrible.
He said I am depressed and rather arogant.Well I noticed you read my post so you can see I am in the same position.
BUT I do have lesions,scarring on the brain.
So if it is NOT seen on an MRI scan then we must be as fit as a fiddle and depressed,have sever mental health problems?
I read the link I was given which made me feel worse.But now realise I am not alone with being told this.
Oh dear, what a bad state of affairs indeed! The neuro is wrong to dismiss you so easily.
I had many MRIs, 2 LPs, 2 EGs, VEP and oodles of blood tests. All over 14 yrs.
There was never anything on tests to prove MS. But my clinical presentation was very much that of someone with PPMS!
But I guess I have been lucky that I was never discharged. I last saw a neuro last year and was finally told I definitely do not have MS.
My label isspastic paraparesis....cause unknown.
So really, it`s not much of a diagnosis, is it?
I think you should go for a second opinion…maybe privately. It would cost around £200. That way, you could do some research on neuros and choose one you feel happier with.
Well, it certainly does not sound like a thorough consultation! Any sensory tests? Scraping the soles of his feet? Balance tests? Etc? If not, then you have grounds for a second opinion straight off. If your GP was worried, then he/she’s quite likely to want a second opinion anyway. He/she could maybe send your husband for an MRI first too (although this seems to be a postcode thing).
I’m really sorry you have been left like this. I was told my symptoms were down to stress/anxiety/depression for 5 years until I got an ME diagnosis (the symptoms of ME are very similar to MS). I was then told for a further 3 years (having had to give up my job) that my symptoms were all down to my ME and refused a referral to a neuro by my GP. I was finally diagnosed last year and at last have some treatment and support, which is lovely.
All I can suggest is that you ask your GPs to refer you to another neurologist who will actually run some tests. It sounds like they are on your side and that really is half the battle. Other than that, if you can afford to see a neuro privately (which is what I did), it may be worth a shot. Not all neuros need a GP referral and if they also work for the NHS, they can refer you for tests and it won’t cost anything.
Hi. I read your post and the exact same thing has happened to me. I was surprised after I wrote my ‘moan’ on this forum at how many people have been through exactly the same thing, surely we’re not all mad. I have made an appointment to see a private neuro in two weeks time although it means we won’t be able to afford to eat for a while. It’s sooooo easy for medics to write things off under the stress and depression banner. You both know how things have changed regarding your husbands health so keep pushing for answers. My thoughts are with you both as I know what a very frustrating and scary time this must be for you both. Shelley.
Ditto to everything above. I was diagnosed with OCD (as I kept going back to drs!) and depression. I’m neither of those things. Take care and wish your ‘other half’ good luck with the neurologist.
I am so fed up of so many of our ailments being put down to “anxiety”. I believe the use of Copaxone and 3 subsequent post injection reactions in the last two months have kickstarted very uncomfortable breathing problems. I had a routine appointment with my ms nurse and mentioned my throat spasms and the horrible tight feeling in my upper chest and throat. Whilst I was speaking to her my breathing and dry coughing was getting worse so I ended up gasping for breath. After consulting my neuro ( he was in the room next door ) he decided that it wasn’t neurological which was fair enough and told the nurse that she should write to my gp asking for an examination and poss referral to ENT. I go see my gp and he says it has been suggested that it may be an “anxiety” issue. That’s just so frustrating, I told my gp in no uncertain terms that I’m not anxious and on that day with the nurse, I think anyone would have become slightly anxious if they were having trouble breathing. Anyway, he makes me do a peak flow test which was poor so he’s diagnosed asthma ( which I’ve not had since I was a child ) and gives me an inhaler. He says there’s no point in referring me to ent. Yippee… another ailment to add to my list. What did strike me as funny was that as he’d got no familiarity of Copaxone, he looked it up in his drug book and said " oh my god, that sounds like a really nasty horrible drug!! " I thought that was just such an obscure statement to make, it was hilarious!! I sometimes just feel that medical personnel just want to push you to one side if they can’t fully understand a medical issue. Why is ms such a mysterious illness to them? Is it because there’s no cure they don’t feel like they can actually solve anything so there’s no point in trying? Whilst I’m sure that anxiety can cause the body to do some strange things, when I read about your stories, it seems clear to me that the symptoms you are having for the length of time cannot all be attributed to anxiety, but then I’m no doctor am I.