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A cautionary tale!

I have MS and so does my mum and I have a very cautionary tale to relate about my mum’s path regarding MS. I would like everyone with MS to be aware that not every symptom they have is due to MS and that we are all prone and vulnerable to other health problems just like anybody else.

Sadly my mum’s story is not a particularly positive one. She had her first set of symptoms in 1982 at the age of 34. They involved numbness that travelled around her body over the course of a few weeks accompanied by incontinence. After a visit to a neurologist she received no diagnosis and was only told that if this happened again she should come back for another appointment. Nothing happened for the next 13 years! She then started to have strange symptoms, a dragging problem with her left leg, and odd spots of numbness in her hands. After 3 years of strange symptoms her GP decided it must have been due to a trapped nerve problem in her back that was affecting her leg and actually recommended her for a back operation, which she had. When her symptoms then got worse and not better, finally her GP found the letter from the neurologist in her notes which stated that my mum’s symptoms had probably been due to an episode of demylination but as she had only had one episode it was unclear. Shortly after this, after undergoing all the available tests, my mum received her diagnosis of ms in 1998.

At about the same time my mum started to experience pain in her groin area at the top of her right leg, she put this down to her MS and started to take paracetamol on a regular basis. This led everyone in the family to believe that MS was also a painful condition. Sometimes my mum would have to take the full dose of paracetamol allowed on a daily basis. I know that ms can be painful for some people but I don’t think this is a common symptom. About as far back as two years ago my mum started to have problems putting weight onto her right leg and would always mention this to her GP. This was always put down to her MS. About six months ago her GP actually examined my mum’s hip physically by trying to rotate it and declared that there appeared to be nothing wrong. After more increasingly excruciating pain she was finally sent for an x-ray around easter time this year and was found to have severe arthritis in her right hip, so much so, that the wearing away of the joint had made her right leg noticeably shorter than her left. I for one was horrified and felt that her GP had let her down badly. My mum was pretty shocked as she had had this pain for years and was always told it was probably due to her MS. Approx. two months after her diagnosis of arthritis she receieved her new hip and is progressing as well as can be expected for someone who now has secondary progressive MS.

I feel on the one hand lucky and at the same time very sad for my mum, who is an ex teacher and has always done her best to remain positive throughout her illness. I was diagnosed with MS in April this year. I had my first set of symptoms three years ago at the age og 34 (the same age my mum was when she had her first symptoms). At the time my GP thought my symptoms, though severe (problems walking, dizziness, severe fatigue and generally poor co-ordination) were just a reaction to some antibiotics I had taken. My reaction was phew! it’s not MS. After five weeks everything was back to normal and nothing more happenend until this year when I experienced left sided numbness on my upper body front and back and the typical MS hug also only left sided in the ribcage area. I was able to tell the neurologist that my mum had MS. This obviously set the alarm bells ringing and he sent me straight way for an MRI. I had all the typical MS lesions (already quite a few) and after a spell in hospital with further neurological testing and a five day course of the intravenous steroids, I received my diagnosis. I was only in shock for a few seconds because I already new what it was before they told me because of my mum.

Seeing my mum with MS all these years, meant that I already new something about the disease and it made my diagnosis easier to take. I look up to her and admire how brave she has been. She could be very bitter about having an unecessary back operation, late diagnosis and undiagnosed arthritis to boot but she isn’t, she just, as she puts it ‘gets on with it’ because that’s all she can do. I have the benefit of medication such as Avonex which she only tried at quite a late stage but came off it after a couple of years because it wasn’t helping due to the fact that she was already progressive (God only knows what the combination of the Avonex and the daily dose of paracetamol at the time has done to her liver). I will also be very aware now of any aches and pains I get which may have nothing at all to do with MS. Although my mum’s journey with MS does not appear to have been a positive one, it is at least a shining example to me together with all the do’s and don’ts which I am now very aware of and gives me a chance to feel strangely lucky.

This is a very heart warming tale, and your own diagnosis is made all the worse because your mum has it too. Of course there is nothing that can be done about it now that the medics spent so long in diagnosing your mum’s condition, but I do hope that there will soon be a medication that can put back some of the myelin in our bodies, regardless of when we were diagnosed. Best of luck to you both,

Yours,

Moira

You put me to shame! It is so nice to hear about your concerns for your mum, and all so loving with no blame laid at her door, for this horrible disease to which you also have been unfortunate to “join the club”. I do not believe my own daughter would be so understanding, you are a credit to her Your warning is so appropriate too, as our GP’s tend (as we can be guilty of too) to always blame your MS. I too have been left to suffer with chronic pain from early this year, until my fantastic ex-employer sent me privately to see a specialist. He diagnosed me with an impingement, or a rotar cuff tear, until they do an MRI or operate they can not confirm exactly what they will find. I had the operation 3 weeks ago and feel like a new woman! Yes I still have MS, but I can cope better with the symptoms when I am not in constant pain or sleep deprived! Thank you for sharing your mothers story …I wish I had read it 6 months ago! And thank you to my ex-employers Magnox for sending me privately and supporting me. Moral of my story is follow your instincts and do not let your GP fob you off … we are not all lucky enough to receive private health care.

Hi, I was told I had a stroke about 13 years ago after an 8 hour operation, most symptoms went apart from totally useless left hand (after about 6-8 months). However symptoms came and went (vertigo, more numbness, horrible crawly feelings under skin, weak arms/legs extreme tiredness ALL the time etc etc) but as I also have kidney disease ( only 1 kidney and that only works at 17 percent) the doctors put all the symptoms down to kidney problems. I was finally diagnosed with spms las year (when balance went and I kept falling over). I had an MRI scan and was told I had lots of lesions and that sorry I must have passed through rms phase and was now secondary progressive. I was relieved that I wasn’t going mad and that there actually was something else wrong, though not glad to have a dx of ms. I went to my gp lots of times over the years and had to practically beg her in the end for more tests - again the lesson from ths is if you feel something’s not right then stick to your guns and keep nagging!

Hi Topsy. Well, what a well written and fully explained post! I admire your ethos and obvious love and concern for your mum. Blesss you.a lovely daughter for anyone to have!

As you say, not all our aches and pains should be automatically thought of as being caused by our MS.

Much love to you and your mum.

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