Forum

How do I get my doctor to listen to me and diagnose me.

I am beginning to wonder if my symptoms are all in my head. I have been going down hill now for 2 years and keep getting sent from one doctor to another to be told my blood work looks great and I am just fine.
My symptoms seem to run in a viscous cycle. They get me down for about 2 months, then seem to start feeling better, when BOOM I go backwards again. I have horrible insomnia. I run a day care and am exhausted in the evening. But there I lay, in bed, wide awake, then the axiety sets in. I am very fatigued anymore. I have had bladder issues for many many years now, with urgency and multiple bladder/kidney infections. I seem to have a hard time breathing on hotter days. And on hot days it feels like my legs are in quick sand when I walk. In the last 6 months I have tingling/numbness and at times pain when walking now in my last three toes on my left side.
My joints hurt most of the time. I get dizzy spells for no reason throughout the day. At times I mixed my words up, and sometimes when I go to speak, I cant remember what I want to say. My vision at times will be blurry and at times will see dark shadows in my side view. I am a slender women, 59 years old. I have always been very active, but these past two years I hurt, to put it mildly, hurt when doing any type of physical activity. I am so tired of reaching out to my doctor and pouring my heart out, feeling embarrassed the more time goes by, that nothing is being done. Does anyone here on this site have any advice for me?
Thank you all so very much for your time.

Hello Mary

Welcome to the forum. I’ve just read this and your other post and feel the need to say initially that to me, many of your ongoing symptoms don’t sound like MS. By that I mean your symptoms don’t seem like my MS.

Of course, we all have our own variant of MS. Not everyone’s symptoms are the same, there are so many possible symptoms that it would be impossible for us all to share them.

Equally, there are many symptoms that are shared with other diagnoses.

It does sound as though your GP is treating you somewhat over cautiously. Having blood tests (for what, which blood tests has your doctor done?) won’t tell him/her whether you have, for example, MS, Chronic Fatique Syndrome, Fibromyalgia, Functional Neurological Disorder (to mention a few other disorders that share some symptoms with MS).

What you could do is write yourself a list of your symptoms, noting how they’ve begun, how long they’ve lasted, whether they completely or partially get better and/or if they remain with you. You could take this list to your GP. (Try not to make it too long as a GP appointment is time limited.) Ask the doctor for their help in finding out what’s causing your ill health.

A GP, indeed any doctor, isn’t going to look at you and your symptoms with a view to ruling certain diagnoses in or out. Instead they’d be looking at your symptoms with the aim of finding out what might be the cause. If possible, you’d perhaps like a physical examination (sadly so many GP appointments are now virtual, by phone typically). Then maybe the doctor could refer you to whichever specialist they deem most appropriate. This might be a neurologist, or possibly a rheumatologist, or maybe a different specialist altogether.

Best of luck.

Sue

Hello Sue, thank you for your insight. If you don’t mind me asking, what are your symptoms of your MS and a little about our journey and diagnosis. Mary

Oh Mary

My MS is so far removed from anyone newly suspecting/suspected of having it. I’ve had it since 1997. It’s 25th birthday is in January.

The medical world has turned on its head since then. Not just in terms of diagnosis, but treatments and even the existence of MS nurses. There was nothing in 1997. In fact to begin with, I wasn’t told it was MS. I lived through many relapses ignorant of the fact that I had MS. (I used to be quite good at sticking my fingers in my ears and signing lalala!!)

I’ve been given 4 different disease modifying drugs over the years. (Since 2002 when they became available and I discovered that it was MS causing my symptoms!) One by one, they’ve given me side effects that meant I had to stop taking them. Which has meant I’ve had lots of relapses. Some of which have left permanent damage.

I had a very bad one in 2012. That meant I couldn’t walk properly again even with physiotherapy and aids to mobility. Almost 2 years ago I fell and broke my femur. That’s meant I can’t walk again at all.

So you see, my journey and diagnosis is so long ago it’s of very little relevance to anyone developing symptoms now.

I have no problems talking about my physical condition. But truly it bears no comparison to anyone with early symptoms that could just possibly have anything in connection with MS.

That’s some of what I meant when I said about our own variant of MS. Mine won’t look anything like the next persons.

Sue