Hi so the time has come for me to get my second opinion this coming week after a four month wait. I have recently had some awful symptoms but getting confused on the whole neurological/ rheumotology similarities. I posted last week for advice on my current flare up which is mainly severe period type pain in my lower back and hips, a painful bladder ( perhaps bladder spasms?) and a return of spasms in my legs. Not many seemed to experience the type of pain I have so it’s got me wondering if I’m seeing the right specialist or if in fact I should be seeing a rheumotologist??? With a clear brain and spinal in recent months, it’s all very confusing. I’m hoping the neuro I’m seeing will point me in the right direction though and I will get some relief from the pain I’m in now. So worried I will be fobbed off as I’ve read so many stories on here of people not getting anywhere with neuro after neuro xxx
Hi Jojow!
Where to start? OK. Personally, having worked in the medicinal research industry and being a trained scientist, I fully appreciate the difficulties that the medical experts can experience in trying to get to the stage of achieving a correct diagnosis of Multiple Sclerosis.
As you will appreciate, the brain is massively complex and that is why the symptoms of MS vary massively too. It also explains why lots of analysis and investigation has to take place, which, as many of the MS community will appreciate, can take a frustatingly long time. In addition, MS symptoms can ebb and flow which can also make it very difficult to diagnose.
The NHS website I’ve linked for you here is very informative.
As far as the neurologists are concerned, this group of specialists could be likened to 'GPs of the Brain- A jack of all brain trades- if you like!
Following my stroke like symptoms, I was initially referred to a very nice neurologist. Clearly, my symptoms suggested to him that I may be another MS ‘victim’, so I was then referred to a consultant neurologist specialising in Multiple Sclerosis.
Having taken my clinical presentation and MRI scan into account, I was then very quickly diagnosed with RRMS last year.
But, I was lucky. Sometimes, it’s not so easy.
Back to you. Remember, that you also need to act ‘detective like’ in your dealings with neurolgists etc. Ask questions. If the answer is unclear or ambiguous, probe deeper. If you are told that it definitely is not MS, then, why not? What tells you this?
Here’s another link which you may find helpful too. One of the users here- reikiblossom, was experiencing a horrendous journey in understanding her symptoms. I believe they have now placed her in the Functional Neurological Disorder category. She posted this very interesting link, which you may also find helpful.
http://www.neurosymptoms.org/#
Anyway, best of luck. Hope you reach an endpoint soon.
Tracyann x
Hi Tracy Ann thanks for your reply. Over recent months I have realised just how complex this whole business is. I have already been told by one neuro it is defo not ms but he was so harsh with me I was intimidated not to ask questions at the time. He has labelled my with psychosomatic disorder and I’ve seen a neuro psychiatrist who is not happy to treat me until I’ve had a second opinion so right now I feel like banging my head against a brick wall as I’m at a loss. The neuro even wrote me a letter for my employer explaining I have absolutely no neurological problems whatsoever so am fit for work ( my job is very physical). Unfortunately for me the week befor I went back to work my present symptoms started do I’m struggling like hell whilst I’m there. I contacted the brain and spine foundation last week and they were so helpful at making me realise certain things in my history that I hadn’t even thought of would help piece things together, in particular the problems I’ve had on off with my right hip. Also told me to mention my c section as this can weaken your back/spine, this may not be relevant but suppose it’s worth me mentioning. Also my mum has non systematic lupus which also may not be relevant but all worth disclosing. I’m hoping that this time my symptoms are taken serious as I’m going as well prepared as can be. I will have a look at the link you posted. I’ve seen the one from reiki blossom and currently I’m on a closed group for fnd on fb as I think this also falls under psychosomatic disorder and conversion disorder as so many people on there are diagnosed with these. Looking on Wikipedia psychosomatic disorder shouldn’t be diagnosed until all other things are ruled out which in my case hasn’t been done yet. Suppose I can keep trying to guess and google etc but at the end of the day I have to leave it to the experts and hopefully this time I have one that will at least listen to me. Thanks for taking the time to reply xx
Sorry for your diagnosis by the way but I bet in some ways it is a relief, I know if I was diagnosed I’d have relief but worry running through my head x
Hi Jojow!
As we all know- s&%t happens! It is, what it is, and I have just gotta deal with it…but thanks anyway!
Firstly, and most importantly, DO NOT GOOGLE, unless you have any medical knowledge/ background. Mostly, it is just a minefield of misinformation; most of which will lead you up every wrong path imaginable! Stick only to bona-fide sources, eg. NHS, university sources etc.
So, there is a possibility that there isn’t anything physically wrong with you. That can only be good news- yeh? That said, before that stage is reached, all of the physical possibilities need to be explored and investigated.
It is really important that you tell the neurologist everything that has been happening to your body. Before attending the appointment, it may be worth having a think about this first and writing it all down. When, what, how long etc. Any neurologist worth his salt should be able to evaluate and make sense of all the information he has been given and determine if it makes sense, or not.
You mentioned that your Mum has Lupus. Personally, I would definitely mention this. It could be very relevant. Lupus is another auto-immune condition, like MS and rheumatoid arthritis and some of the symptoms can overlap.
My fingers are crossed that you reach your endpoint soon. I’d be really interested to learn the outcome.
Best of luck
Tracyann x
Thanks tracyann, love how you say s**t hsppens, this is steering to become my attitude ( as long as this ends up nothing too sinister). I’ve done my list, family history, my own bit of history, my symptoms that went on last year and my present ones which are the worst for me yet, pain wise. I did a hell of a lot of googling at first and realised it is absolutely the worst thing you can do but it is all so easy for us to just pick up our phone or laptop and put in a symptom every time something crops up. It would be lovely if it turned out to be psychological in a way but there are some people out there diagnosed with conversion disorder etc who are suffering in a bad way so I would hopefully address what is causing it ASAP if it turned out to be this. They say it’s your subconcious mind so would take time I think. Fingers crossed I will get to the bottom of this soon and will get the correct treatment for whatever I have xx