5 years ago
Let down…

I feel so let down by my doctor & everyone. Currently undiagnosed. He wrote to my neuro 4 weeks ago & I haven’t heard anything. I’d given up ringing my doctor, it use to be often but I gave up cause I just didn’t feel like I was getting anywhere. I gave in & rang him today asking if he had heard anything but he hadn’t & he is going to chase neuro up. I told him about a strange feeling I have been getting in my eye and he just said go to the opticians they will know more than me, but that he doesn’t associate my eye issue with anything cause I haven’t had loss of sight or double vision. I told him about my back bum & leg pain & again his motto is ms doesn’t cause pain in general, I know that’s rubbish & hes head of that surgery and has been for 30yrs. I told him I’m waiting to hear back from my work about returning and he said have you thought about how your going to cope and I need to be doing physically more than what I am so work doesn’t hit me like a ton of bricks. I’m scared about work let alone him giving me the hint that I need to be. So all in all this has been going on since last November, I have no diagnosis, no doctor who cares, no neuro who cares & I don’t have any access to ms nurses. I feel so let down & worried by it all. Sorry all just needed to get it out. When I told him my ears are still ringing after 2 months he just changed the subject. I told him my back pain has improved & my speech is slightly better but he doesn’t give a dam just ignores me.

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He’s 30yrs in practice and he says ms doesn’t cause pain?

Omg, just when you think you’ve heard it all!!!

Might be an idea to change your GP, seriously.

He lives in the dark ages. I’ve tried seeing other doctors @ the same surgery but cause he’s head of practice he gets to find out & whoever else I see has to go through him, so I’m stuck with him.

@boodle06, have a look at this website and see if they can assist.


Do you have to stay with that particular surgery, because I agree with @f3ng5hu1.

You’re free to go to any surgery you wish. I’d leave that one post haste.


@boodle06 – Go see another doctor. Not only does it sound like they aren’t taking you seriously but you obviously just can’t work with them. I’ve been in your exact same situation. The only way to get out of it and get moving on a dx is to find another neurologist and GP that will actually listen and help you. Be forceful and stand up for your needs. The direct statement to a new doctor “I am in pain. I have issues x,y, and z. I need you to help me figure out what is causing it. I need you to listen to me and work with me to figure this out.”
The only way you’re going to get the care you need is to find someone who is willing to help.

I helped a friend change GP practice and all it involved was going to the new one and filling in a form. There was no need to explain or go back to the old one.

Thanks for all your advice, I’m going to see what comes from this request from my doctor to my neuro for another MRI & if it’s not allowed or disputed in anyway then I will definitely go along with a new doctor & neurologist. I really expected more urgency & help/support when it boils down to a major organ in your body!

Good for you – keep us posted.


Unfortunately, yours is a situation all too common in regards to an MS diagnosis and a medical profession who either doesn’t care, has no clue as to the facts about MS and dx of this disease or possibly those that see dollar signs when it comes to difficult to diagnose diseases like MS where they can put you through the ringer of tests, office visits, specialist visits and the rest. I know that @chels can most certainly relate and I can do.. it’s demoralising as well as completely frustrating. I have heard from others who have had in excess of 30 MRI’s trying to get to a point where they fit the McDonald Criteria (a criteria which states that you must have a certain number of lesions on your spine and or head or if not both spine and head then you also need a positive lumbar puncture etc etc.) As neither an MRI or a lumbar puncture are definitive diagnostic tools in the diagnosis of MS the fact that they adhere to this criteria when many may take years if ever “fit” is beyond ridiculous… and yet they will tell you that the “majority” of people will at some point have these “classic” presentations. Well, MS most certainly does NOT follow any classics and is quite individual in the way that it presents and obviously this does not accommodate all those who are not in the “majority” who will never be “classic”. I have found that most GP’s have no idea and even Neurologists, despite being heads of departments at large hospitals still go by some myth that lesions on the brain equal MS, no lesions = No MS… A neurologist I saw hadn’t even ever heard of Primary Progressive MS (which is what I have)… so I feel for you and I know it sucks. I’m just so sorry that you too have had to go through this. I really wish something could be done to cause significant change in the way MS is diagnosed and in the way those coming into physicians with symptoms are treated as they investigate the cause of these symptoms. After having all of the tests done to rule out alternative diagnoses and finding they were negative/normal, one GP announced very happily that this was really good news because apparently I was FINE….

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