Last reply 2 months ago
MS Progressing as expected ?

1998 I lost vision in my left eye for a period of time.
Dr said it was a virus.
2003 I was suffering with balance problems.
Dr said a lot of people suffer with balance problems.
2008 I was off work for 5 months following catching Chicken Pox.
Dr said it could be ME, but eventually it will pass.
2015 had some hearing problems.
Had a MRI scan which found some lesions. No further treatment.
2016 I again was suffering balance problems and aches.
Dr couldn’t find anything wrong.
2017 More pain, balance and struggling to walk normally.
Dr couldn’t find anything wrong.
2018 Continued balance and walking problems with aches.
Dr referred me to Neurology.
Dec 2018 had Neurology Consultation.
Dr did numerous examinations before advising me I had SPMS.
Jan 2019 had a spine and head MRI to rule out anything other than MS.

Since the diagnosis, I seem to be deteriorating quickly. I am not only able to walk for 5-10 mins before having to stop. I struggle to stand and walk upright, my waist seems to be disconnected, and its all I can do to remain upright.

I feel as if the Health Service has let me down, and I’m still struggling to find answers.

I guess my first simple question, is this a typical story of a MS journey.
My second question is how do you deal with the uncertainty of the future / work / mobility etc.

I am normally fairly upbeat, but seem to be on a downer right now. I’m not after sympathy, just trying to get a grasp of where I am and what my future may hold.

Just typing this out has helped me think a bit clearer, but welcome to hear your views.

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5 months ago

WOW did we have the same doctors?
Your Not to different as to me.
It’s all good fun ain’t it 🤣

5 months ago

My memories gone now too, I don’t even remember typing the above.. 🙄

I’m not quite SPMS though, I just snuck in on the RRMS diagnosis.

Get referred to a neuro rehabilitation physio if you haven’t already to try and help you with your mobility.

Sadly your tale is all too common. 🙄

5 months ago

I had my “first” symptom in 1998. I lost some vision and my GP diagnosed me with Optic Neuritis, prescribed oral steroids and signed mo off work for six weeks. She never mentioned MS. I went straight to the library and looked it up in a medical book (no internet back then). But I did have previous symptoms that I saw her about but weren’t properly investigated. I’d had pins and needles in one arm. Then in 1996 I had numbness in my legs. I did get my one and only MRI but was told that nerve damage had been caused by Vitamin B supplements. MS wasn’t mentioned till years later, I can’t even remember when. When I was given a diagnosis of RRMS to start with I did see the Neurologist. He diagnosed me with a hammer to the knee test and then said “there is no doubt in my mind that you have MS”!
I wasn’t offered any drug treatment or care plan. I saw him yearly till he got bored with me. Haven’t seen him for 15 years. The last 5 years I have seen the Neuro Rehab team twice yearly. But they refuse to give me an MRI scan or to put me on some proper MS treatments. I think I and other MSers in this area are victims of the postcode lottery. Some areas have great Neurologists and MS nurses. I don’t. I wish this country would get it’s act together and be proactive and consistent with our treatment. In my dreams….

5 months ago

@n3tm4n, not disimilar. I had a wobbly walk…..
2013 told it was my neck- old age. Got worse….
2014 different doc sent me to neuro who sent me to ortho surgeon who operated & said it won’t make it better but it won’t get worse. It did!…… Couldn’t walk without support.
2015…..Ortho sent me back to neuro
2016….after the usual tests was told it’s ppms

In their defence, I DO know it’s extremely difficult to DX anything neurological and given my age, trebly so. xx

5 months ago

When I think back on all my symptoms over the years I think I was diagnosed with MS about 7 years after my first symptoms in my early 30’s. I had a strange inability to raise my leg to get out of a car and/or climb stairs. It was explained as an irritated nerve due to the kickboxing classes I was in. When I had optic neuritis when I was pregnant the possibility of MS was raised but an MRI couldn’t be done due to pregnancy. Symptoms went away (as they often do) in my 3rd trimester. When I had issues walking while hiking when she was 2 I went to a neurologist at the U of M (Minnesota in the US) who was a well known MS Dr and he diagnosed me and immediately put me on Copaxone.

Unfortunately MS often isn’t diagnosed quickly. This must be due to the cost of the test needed to confirm diagnosis. Insurance companies must not like paying for MRIs until there is overwhelming evidence that one is needed. I know they pushed off allowing one on my hip until it was so destroyed that the arthoscopic surgery that was attempted didn’t work and a full hip replacement was needed. If the MRI would have been given when I asked for it the initial surgery had a chance of working according to the surgeon that did it but by the time I got to surgery he really didn’t think it would work…and it didn’t. A waste of $50k there and 6 months of recovery and PT.

Maybe the technology will “cost less” so MRIs are given earlier so diagnosis can be done sooner to lessen the damage which will cost less overall…unfortunately it is all a big equation and we are caught in the middle.

I think it also matters if you get referred to a neurologist and if they know enough or specialize in MS. With a disease as common as MS (at least in my part of the world and my DNA group) you think it would be diagnosed quicker.

5 months ago

@merfield, don’t have ill feelings towards the vast majority of medical professionals I’ve met. My world is so binary I can appreciate their world and skills are vastly different from mine.

I guess I am just worried / concerned about the future. It is comforting to some extent to hear I am not on my own. Even though I obviously would never wish MS on anyone.

Anyway, time to get a grip and keep smiling. 🙂

5 months ago

@n3tm4n, Essentials for the MSer:
Sense of humour – tick
Determination – tick
Perseverance – tick
Seeing the funny side – tick
Bloody mindedness – tick
Tolerance – tick (work in progress)
And a big Smile – tick (mostly)
Back to the big 😊xx

5 months ago

@n3tm4n , as mentioned above, your 20 year tale of woe is not unusual. GPs seem to focus just on the reason for that particular visit, rather than taking a holistic view, which might allow them to connect the pieces together.

Please don’t get too fixated on the future. No-one, and I mean no-one, knows what the future holds. Try and concentrate on the here and now.

You just need to look after yourself, to keep yourself as fit and healthy as you can. It’s a good call by @wobbleone above regarding a Neuro-physio assessment. Your MS Nurse should be able to arrange that for you.

5 months ago

Lol 😊 so what you are all telling me is I am not special after all.

I will have you know I have school reports from the 70s telling my parents I was “special”.

Joking apart will take all the advice given, thank you for your messages.

5 months ago

Haha although it does get tried at times, that’s one thing we all have in common too, a sense of humour. ……luckily 🙃

2 months ago

@n3tm Watch the film, Monty Python – The Life Of Brian, and listen to the song at the end, that’s all I need and I know what my future holds.

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