Querying ms

New diagnosis and before diagnosis
1

Hi everyone.Sorry if I have posted in the wrong place of the forum.I have not been diagnosed with ms but have been sick for 12yrs and unable to teach which was my job a primary school teacher.I have had a wide variety of symptoms.I initially collapsed and had weak side of body and blurred Speech headache fatigue dizziness sickness.I was in hospital and stroke was ruled out then I had a cat and an MRI brain scan to rule out brain haemorrhage and brain tumour.Ms was mentioned and I was told there was no sign of the start of it on my scans.I was sent home and has struggled ever since.A cardiologist diagnosed me with chronic fatigue syndrome a few months later.Later on I saw a rheumatologist who ran a cfs clinic but his initial opinion was I wasn’t like a cfs patient.I never asked why and wish I had.

I suffered depression and anxiety as my life disappeared.My job went Then due to it my home.Everything changed.I spent a lot of money on alternative therapies, seeing various private specialists who were said to be miraculous for cfs or me patients.Nothing helped.I was referred to a neurologist who was not a very nice lady.She said after hearing my symptoms ms was her thought but after examining me and banging me with the elbow and looking into eyes she said no and very patronisingly that people with mental illnesses think they have things wrong with them.Joints seize up

i have always had the thought that there is more to my illness.I joined groups for m.e. cfs sufferers and never fitted in and did not feel my symptoms/life related to that condition and more that I was labelled cfs and so never received any other diagnosis because I had that one and the depression anxiety!

Twice I asked gp’s do you think I could have ms as my symptoms are ms symptoms and they said oh no you haven’t had them in the right order? What does this mean? Is there an order? I can’t find any info online of a specific order of symptoms??

i am just

My symptoms are: Blurred vision/visual disturbances but opticians & opthamologist say nothing wrong with my vision even though I can’t see who is walking past the house in front of me? Bad headaches, cognitive difficulties,can’t remember names of ppl or places I know very well,I forget the way to places I have gone to all my life.Bad memory I can’t remember what I did yesterday or what I ate.I forget medical appointments even though reminders.I feel nauseous,dizzy,and feel like am moving when I am still.I get motion sickness in a vehicle I never did before.Severe pain in joints.Worse with fatigue and the fatigue isbad and the pay back for doing something or over doing things.My left hand feels numb.I can use it but not for anything involving grip, weight, strength.I am jittery with both arms and drop things all the time.I get numbness in my lips/mouth and legs.I get something that feels like being frozen.I can be in the chair and it’s as though I am frozen and I cannot move or lift my hands to use the phone or anything.Its scary.I can’t think straight I feel confused all the time and conversation causes my head to pain everytime I think sometimes processing what someone is saying to me is tough even when quite simple and I am not stupid I have a degree and a pgce.I can’t read as afterva few lines everything is blurry and jumping around the page yet eye tests say no sight problem! Also the amount I do read I struggle to digest and comprehend it and forget it by time on the next page.So frustrating.I have had badder and bowel probs of incontinemce for at least 12 years and suffer severe incontinence.

i feel as I have depression and anxiety everything is automatically put down to being because of those conditions!! Also the cfs diagnosis means no one checks what new symptoms are or why I am having symptoms.

i am just wondering what you all think? Would you be curious if me and do you think ms is something I should push to be looked into?

Thank you everyone.

2

Hi, I’m pretty new here myself. I am waiting to be ‘officially’ diagnosed with MS myself but I clearly have it. I am not well experienced with all of this, but to me- this is clear… no wonder you are depressed.With your symptoms and the length of time it’s been you must really struggle. There is nothing worse than people who don’t take you seriously and yes I would definitely push for further investigations.

The longer things are left untreated, the worse it can be. Whether it’s MS or not it would be a big relief for you to have someone listen to you and take you seriously.

Yes your symptoms are that of MS, but also of many other conditions so I hope you can see a gp/neurologist who can help you. Chase it up and take care x

3

Blimey BearButterfly, you’ve certainly been through it, and after twelve years you’ve no real answers. Of course you’ve got depression and anxiety, who wouldn’t have in your situation?

You describe symptoms which probably match a whole bunch of conditions, so I can’t help you with even a guess at a diagnosis, but don’t give up. You know how you feel, and you know how you used to feel before all this started, so keep pushing.

GPs know very little about MS, they can’t diagnose it so refer us to neurologists. Saying you haven’t got your symptoms in the right order seems bizarre, I just don’t know what to say about that, and I’ve certainly not heard anything like it before.

Sorry I can’t be more helpful.

Ben

4

Hi

As Ben said, you’ve really been through a bad time over the past years.

Some of your symptoms do sound like they could fit in with MS, but others are maybe not such a good fit. The problem with MS is that there are a huge variety of potential symptoms. My MS might be similar to someone else’s but it’s not likely to be identical.

And in addition to MS having loads of possible symptoms, there are a huge number that are shared with other diseases and disorders.

Your trouble may well be that you’ve seen various specialists over the years and yet don’t seem to ‘fit’ in with any diagnosis.

In your situation I think you really need to have a GP who is willing to refer you back to a neurologist. You may have to see a different GP if your usual doctor is unsupportive. Perhaps you should write down all of the symptoms that you’ve experienced, but include dates and length of symptoms as well. If you’ve had pain and numbness for eg, write down when and how long it lasts. If you’ve had cognitive difficulties, are they constant? Or do they come and go? Try to make your notes brief so that you can talk through what’s happened to you and when.

When you see your GP, it’s a good idea not to say you’d like MS to be investigated, but just to say you think there could be a neurological explanation. The reason for this is that GPs really aren’t keen on patients who seem to fitting their symptoms to a specific diagnosis.

If you do manage to see a neurologist, again try to go through what’s happened to you and when.

I do hope you can manage to get your symptoms recognised as real physical problems and with a bit of luck (& a bit more time unfortunately) have something diagnosed which explains everything you’ve faced over all these years.

Sue