Forum

Concern for others

Having spent a lot of time reading and trying to digest the various postings on this site it appears that the people here are relatively confident, at least enough to reach out and ask questions or seek help. The treatment that some get from the Medics appears to be varied ranging from very helpful and caring, to downright incompitent. What concerns me is the people who feel they have no answers and nowhere to turn and are timid enough not to question what they are told and dont wish to make a fuss. I know resources are stretched but these people need looking after instead of being dismissed out of hand. Is it any wonder that depression is a common complaint by MSers! Tony

Hi Tony, the hidden, the invisible who are left to fend for themselves without proper support from the profesionals. All we can do if we know someone like that is be there for them, encourage them to put themselves forward, give them a boost or nudge in the right direction. I suspect a lot of people who visit this site never make any contact on the boards but at least they can read what others are doing/experiencing/thinking and hopefully give them an idea or two for their own lives. So keep on posting folks - all thoughts, questions, ideas etc are needed!

You are absolutely right Tony. One of the things I have learned about MS and dealing with the medical profession is that we have to take control of our own treatment and meds. We have to ask, not wait to be offered. We have to understand more than most patients - because most doctors haven’t a clue about neurology!!! A GP will maybe have 1 or 2 patients with MS. They won’t have studied neurology since medical school. Very few medical students do a neurology hospital rotation because it is too hard! That means that very few doctors know about MS. Even a lot of neurologists don’t know a lot about MS - that’s because neurology is a vast subject so they simply can’t know everything. I’ve heard stories of neurologists saying things like “Oh, you can’t have MS, you haven’t gone blind” and “MS doesn’t cause pain” and “MS doesn’t cause vertigo” and “MS doesn’t affect hearing” etc - all, of course, utter RUBBISH!!! That’s why it is important to make sure you see a neurologist who knows about MS. It doesn’t have to be an MS specialist - some general neurologists are amazing - but it’s often best. It’s also the reason that it’s best to be able to take charge. To know what to do - because often the doctor won’t! Further to Clare’s point, one of the interesting things on this new version of the forum is being able to see how many people have read a post. The difference between the number of replies and views can be quite staggering. So when I reply to someone, I try and add as much detail as I can so that hopefully some of those viewers can get help too. I would also encourage everyone to join in if they can. You don’t have to use your real name and you don’t have to know the answer to put a few virtual (((hugs))) or just say “Hey, I have that too!” - both of these things let the poster know that they are not alone; other people understand. Sometimes that is far more important :slight_smile: Karen x

hi thank for this post, its reassuring to know that someone is actually aware of what it can do to us limbolanders! i am one of those people who are unable to force my issues forward with regard to my symptoms. Why? because when i go to the gp they often look at me like im an alien from another planet, well i must be to have such weird symptoms that they havent immediately got a name for. because when i got to the end of my tether and wrote it all in a letter to my gp he tentatively asked my did i want to take the letter back so i wouldnt go on my file? (i did take it back) he asked me what i thought it was and i said ms to which he replied “if you had ms you wouldnt be able to walk” but referred me to a neuro anyway, i later found out that his referral letter said that i was" suffering with headaches" and none of the other stuff was mentioned. i went back and asked for a second opinion and was surprised that i found myself seeing the same neuro as before. he said " i dont want you to say anything for a minute until i’ve said what i have to say" then he said “you were only here a few weeks ago why are you back here now?” “I’ve given you my opinion and that was to stop taking co codamol and your headaches will go away” i told him that i was not happy with the way the appt went and felt that it didnt cover most of what was wrong with me. he apologised and by the end of the exam he told me its probable ms from my examination and symptoms. he then told me he would arrange a mri and a lp. he also told me where my lesions were likely to be! had mri and it only showed one lesion so he withdrew the probable ms. he never arranged a lp or any other tests even though the radiologist commented that i should have an mri with contrast. i guess that means that radiologists dont hold much clout. anyway i have been back since as things were getting worse and he refused to accept that there was a problem but he did refer me to an ms specialist and it was obvious that i had been classed as a troublesome person and the walls were up and no way was i going to get an ms diagnosis. thats fine if its true that i dont have signs of ms but when i’ve gone to gp for another problem he said"oh its probably the ms" so i dont know where i am with it all but i do know that i dont have the strength to keep fighting for a dx, its detrimental to my health. i am so afraid of them not finding anything again and again i will be classed as a hypochondriac. this site is the one and only thing that keeps me going and gives me faith that i am not the only one. i dont know how else to make a stand now that the neuros in my area have bulit this wall around them, they certainly do stick together. i dont understand how someone can be so sure of ms and then say no definately not. he could have just been more honest and explained things so i didnt walk out of there feeling like a fraud. i never have a day where i feel" normal" and dont expect to again but i do know that i have to deal with it the best way i can and at the moment that 's denying as much contact as i can with the medical profession, which completely contradicts the way i feel :frowning: maybe one day eh?? best wishes mandy xx

Hi I just wanted to share those virtual hugs with all that Karen so rightlly pomotes ((((((HUGS)))))) :wink: Mandy your post particularly touched me today as I am off to see the Neuro tonight, MS Specialist I believe so maybe naively I am am hoping for a difinative answer but will definitely also keep in mind that I need to ask and not just expect to be told as Karen very helpfully points out. Feeling very much like a hypochondiac and becoming increasing nervous about the appointment :cry: Kxx

Hi, well I reckon I am a forward kind of erson, who isnt shy to ask questions etc....BUT after being thorughly chuffed about by neuros over many years, ive decided to let it go over my head now. im sick of waiting, having unpleasant useless tests (as far as im concerend, I mean), having one neuro completely contradict another, being told by an MS nurse that I am an intelligent woman (what the chuff has that got to do with owt?) having my phonecalls un-answered and promised letters never appearing, that I have decided I do have PPMS and will continue with the symptom helping meds my GP prescribes and as for the rest of the neuros I may or may never even see, I aint gonna chase the issue anymore. Profound? Yes...well I simply dont wanna spend anymore years racking my mind with the phrase What is it? But I`ll still be around this site to offer advice and ask for the same back. luv POllx

Kirstie34 wrote:

Hi I just wanted to share those virtual hugs with all that Karen so rightlly pomotes ((((((HUGS)))))) :wink: Mandy your post particularly touched me today as I am off to see the Neuro tonight, MS Specialist I believe so maybe naively I am am hoping for a difinative answer but will definitely also keep in mind that I need to ask and not just expect to be told as Karen very helpfully points out. Feeling very much like a hypochondiac and becoming increasing nervous about the appointment :cry: Kxx

hi kirstie i hope your appt goes well and that you come away with answers, i know how you feel but you have to believe that what your body is telling you is the truth and act accordingly. its easy to say i know. please let me know how you get on, i’ll be thinking of you. best wishes mandy xx