Last reply 7 months ago
New here

Hello to you all 😉

Just after some advice after seeing a neurologist who unfortunately was extremely patronising and condescending. So I waited 3 months for this appt and my symptoms started back in the heat of the summer, although some other symptoms have been around for longer than that. I attend my GP in June – July a and Aug worried about pins and needles and my feet and toes feeling numb, I have had blurred vision (checked at opticians and no real concerns just need a slight prescription for reading). I have had bladder symptoms – always needing to go or never going or emptying properly, bowel issues with constipation and urgency. The heat exhausted me in the summer I was so knackered, my left arm and leg felt v weak, my arm didn’t feel like it belonged to me changing gear in the car. These symptoms lasted a few weeks, but dissipated eventually. I had difficulty typing and txting, falling asleep early and generally feeling exhausted all day. I had been put on HRT as they considered perimenopause 🙁

The HRT made no difference to my symptoms, I’m taking antidepressants as my mood is often up and down (not that anyone would see it as I always look well and smile). Imagine (well I suppose many of you don’t have to imagine as you’ve been there) but waiting and waiting to see a neurologist only to be met with an attitude. Yes she was trying to be nice and reassure me but was patronising. I explained all my symptoms, and she came up with Migraines! I’ve never had those but have had pain behind my eyes and severe headaches that have lasted a couple of days but they haven’t been prominent. She started asking me about my past and relationships and depression………blah blah……….and stated that some trauma in the past can manifest itself in some of the symptoms I was talking about. She stated to go for counselling or palates!! Of course these things can help I’m not adverse to it. She did some tests and of course I have no symptoms at that point, yes my balance is off, but the finger to nose thing……. a few weeks previously I would not have passed that! I’ve sufferd with back ache and can’t believe I forgot to tell her that, it’s lower back pain and leg pain really not good. So basically I leave knowing she’s booked a head MRI and doesn’t think I have anything to worry about, she certainly doesn’t think it’s MS! (Of course that would be great, but what about how I e been feeling for months?) my cognitive ability is appalling, forget everything and even forgot my partners name of 5years for a whole 10mins – I seriously couldn’t remember it!

SO I leave feeling as though she’s basically said I’m bat shit crazy! I’m fed up, frustrated and angry! I’ve had sexual issues (TMI) I’ve got numb parts, and altered sensation on my upper chest I am not making any of this up 🙁 I’m a health care professional and would t waste anyone’s time, I just want to be heard and taken seriously and not brushed off.

Has anyone else had similar experiences then been diagnosed with MS?

Thanks for reading and sorry to go on and on 🙂

Dory XX

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7 months ago

Hi @doryblonde and welcome.

Your story will resonate with a fair few members, who have had similar problems. Unfortunately, we won’t be able to give you a diagnosis, but we do understand how you feel.

I would have a chat with your GP about your experience and see if they would suggest a second opinion. This is your prerogative and you can choose any hospital.

Otherwise, you’re more than welcome to quiz us on any other concerns you have.

Do keep us updated. 😉

7 months ago

Sorry you were made to feel like that, a lot of the neuros certainly need to brush up on their bedside manner as sadly a lot of us have experienced similar.
Try not to stress over it though as that will just aggravate your symptoms. (easier said than done I know)
She has organised an MRI so hasn’t totally dismissed what you’ve told her and hopefully that will help towards making a diagnosis for you.
Unfortunately it can often be a very slow drawn out process and most often they try to rule out any other cause first.

7 months ago

Sounds very patronizing and as stumbler noted it is a common theme in the MS community. Getting to diagnosis can be a very frustrating long journey. It also sounds worse in some areas in the US and in different countries. You do mention that an MRI has been ordered? So that should give some definitive answers as long as it is read by a Neurologist with MS training…if you don’t feel they analyze it properly maybe it can be forwarded to an office that can. They should take a brain, cervical and spine as MS lesions can be found in that full area and impact different brain and body functions.

It can be hard to be patient as you wade through all these tests but hopefully it results in the proper treatment. Sometimes what we experience isn’t all MS and we have additional issues to be treated that they may need to get to the bottom of.

In the meantime learn all you can and document all you can. Many of us keep an “MS diary” to keep track of our symptoms, when they started, when they stopped, what diet changes we have made or things we have done that may have impacted them, our weight, our mood, etc. You can find examples online. This may be a useful list to bring with you to appointments to show them and remember to talk about all of them.

7 months ago

Thank you itsmewithms, wobbleone and stumbler 😊 your words have been encouraging and I haven’t got much longer to wait for the MRI it’s on the 28th so will keep you posted 😊 I appreciate you replying and am keeping my fingers crossed that I get some answers 😊

7 months ago

Hi im Lisa i was diagnosed with MS when i was 52 and now 62 im so sorry to hear you went to hell !!! But similar woth me i
Went to or tryed to go to 4 different neurologist #1 he dr. Couldnt find my MRI flim plus he was 2 story stairs to his office NO elevator!!! #2 after just 3 visits she retired #3 he kept moving his office
4 different times the last move he now no longer takes my insurance!!! So i quick for a long time ….., i now have a doctor that comes to me …… seriously we shouldnt have to chase our Doctor so yes i have sorry to hear !!!


7 months ago

@doryblonde I think you need to put a @ before the name for them to be notified that you have a specific reply to them
@lisa_morghan with so many of us having issues with diagnosis and care I wonder if we should harness our list in some type of survey or action to document our frustration. Maybe use survey monkey or some tool where we could send numbers or percentages to organizations like the various MS societies or DMT customer service, etc. If we can show some big numbers and especially show how different regions/countries around the world have both some common complaints and some specific issues maybe something can be done?

@stumbler maybe you know if surveys like this have been done in the past? are there any members that are into that type of thing? I’m an accountant ;-0 so I like to track and measure but not into the marketing/communications end of things

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