I’m writing this on behalf of my Mum. We’ve watched her go downhill for the last five years but it’s been so gradual a decline as to be only noticed by people who’ve not seen her for months or years. Mum came off a motorbike about 12 years ago and broke her leg, it seemed to act as a catalyst for what was diagnosed as Rheumatoid Arthritis, my grandmother had RA and in fact all of her children, my aunts and uncles, have been diagnosed with Autoimmune disorders, which means mum has Gastroesophageal reflux disease (GERD), Celiac disease and RA. She takes different medications for pain control, the GERD, is on a gluten free diet and can not tolerate alcohol etc. Over the past 18 months, 2 years we’ve noticed Mum losing her track, falling more often (5 breaks in 3 years) she’s only 45, failing to find correct words and dropping cups, plates etc. She gets pins and needles, feels like her chest is being sat on and choking on air. She’s gone from being an outward happy, brilliant woman to being a shadow of her former self who would prefer to stay in than risk being thought stupid when she can’t articulate a simple sentence. She was happy to get out by herself, able to sign and speak and make herself understood. Mum’s got a cochlear implant, she had meningitis when she was 13 and it left her deaf, but despite everything she’s raised happy, healthily, confident, well adjusted children. we are concerned that going through more tests will add more stress and make her worse. What difference if any, will a diagnosis of MS make to her life? she’s always accepted the deafness and the RA.
So difficult to answer that, for me a diagnosis was finally having a name for all the symptoms I had experienced over a long period of time and being able to manage the symptoms. Without a diagnosis it was difficult to phone in at work sick because I couldn’t tell them what was wrong. They have also now made adjustments for me so I can work at home. Also I am now receiving the relevant medication to treat the pain and on DMD’s. I was diagnosed after 2 MRIs and relapses ( a few blood tests too) so the tests were not stressful, although there are many others who have had Lumbar punctures, MRI blood tests and EVPs etc etc.
Hi Daisy, it is stressful and worrying going through all the tests - I don’t think there are many who would disagree with that - but ultimately it’s worth it. ‘Knowing’ can make a tremendous difference to our lives. We’re in a better place to be able to receive the right treatments and medications, support and help from other services too; neurophysio; OT; pain clinics and Speech Therapists just to name a few. MS can be difficult to diagnose, simply because some of the symptoms can mirror so many other things, but try not to let that put you off because it doesn’t necessarily mean it’s a long process for everyone - it wasn’t for me. You said your mum has accepted the RA, but would going through more tests be something she’d consider? Debbie xx
I agree with the others. For me, knowing and getting help are the two biggest benefits. The third, related, thing would be making sure that I haven’t missed out on the chance of getting better - how awful would it be to discover, years later, that I’d have been able to stop it or even make things better if I’d known earlier? (And this really is possible, eg with vitamin B12 deficiency.) Finally, and I hope you don’t mind me saying this, if there is a family history of symptoms that have been diagnosed as all sorts of things, were those diagnoses correct or could there be a single genetic condition causing them? If it were my family, I would want to know. On a different matter, might your mum be struggling a bit with depression? Dealing with all these changes is really tough and depression is very common in these circumstances. I’m saying this because it sounds like she is becoming a bit of a recluse? If this might be true, please encourage her to see a GP - there is help available that can make a massive difference. Karen x Karen x
mornin, i aked my daughter Anne to write last nite, colndt get 2 worms out lol. tis so frustrating to take long time write simple sentnce. and to know thing not write but not be able to change. Hi, i’m Daisy im not sure i need anothr lable! it would be nice to give how i feel a name, im ware its been geting worse, i have good days but get so tried and i woulnt have seen GP but that we moved and was for first meet n greet.
I know what you mean about labels: I’ve been rather good at collecting a few over the years too! It really is best to get the right ones though because then it’s much easier to get access to right meds.
I should probably have done this first as no doubt I’ve now convinced you I’ve got MPD My name is Daisy and I have a daughter Anne who types out messages for me when I get too tired or when I’m just typing complete and utter rubbish. She should only type out what I ask her to but sometimes she gets carried away (yes, yes I do lol) You’ll probably be able to differentiate between who’s writing but I will try to remember to sign the posts. I’m 45 years old, Have been deaf since my teens and have a Cochlear Implant and have been diagnosed with Rheumatoid Arthritis for the past 10 years, our family have a history of Autoimmune, I have siblings with RA, Osteo and Chrones. I used to work full time, part time when I was bringing up my children. About 12 years ago I came off a motorbike, don’t ask what I was doing on the motorbike, and broke my leg badly, I spent some time in hospital and then came out with a chair (was told I would always need a stick, more likely crutches and occasional use of chair) and a walking frame. The break seemed to activate RA but I’ve got used to that. I’m on pain relief and meds for the RA. Over the past year or so I’ve noticed a gradual decline in my ability to form complete sentences, even my signing has been off, an increase in falls and indeed in dropping things. I went to my GP about 10 months ago and was near enough told it was in my head, the pins and needles were because I wasn’t walking straight and my incoherent speech and tiredness was stress related. In Dec we moved but I waited to transfer to a new Dr, as soon as he saw me as part of the New Patient appointment he said he wanted to refer me to a neuro and he wasn’t convinced that my gait and clumsiness were all related to the RA. so we wait for a referral to the hosp but as I said to my daughter yesterday, I’m not sure what difference another diagnosis means if there isn’t a cure for it. I suppose I’ve just hated labels since I was a child, “the deaf one”, since I was a new mother, “oh you’re the keelans” or now since I’m “the batty one” Anne typing and translating for Mum, Daisy
I would say it IS worth knowing.
At least you then know what you’re dealing with and knowing why certain things happen to your body is a great help.
I would see the GP if I were you and take it from there.
Good luck and let us know how it goes,
Thanks Pat, ive seen gp, await with eager antisicpation the appt from that big place with the beds to see neurotic. Daisy
Hi Daisy, may I say how hard it is to cope with any serious condition, let alone having extras as well…bogoff comes to mined! So well done to you, for coping with very difficult things.
I am still not fully diagnosed after seeing neuros and being tested for MS for 14 years!
I have been told I do not have MS afterall.
To me, a label does matter…the amount of folk who ask me what is wrong with me and having to say no-one knows, drives me nuts.
Also, as others have said, knowing what is wrong, can gain you access to drugs/treatments to help.
I am deaf in one ear and that makes life extra difficult. I get fed up of saying,
Pardon?. Deaf aids dont help and i did join a lipreading course, which was free. Then they put a hefty charge on it and I didnt qualify for a discount, so I stopped going. i have to watch people`s faces and strain to work out what they are saying most of the time.
Sending you a hug.