Hi everyone! So pleased that 1 of my best friends suggested last night to look around for a Forum for help as I am so struggling with my MS at the moment.
Although only formally diagnosed with "Benign MS" in late Dec '13, in hindsight, it probaby started in the late 1970's when although MS was queried by the Neurologist I saw then, it was actualy diagnosed/treated as trigeminal neuralgia (lasting almost 2 years). When I 1st saw my MS Nurse, last April, she said Benign MS doesn't exist (which didn't surprise me as my symptoms were anything but benign).
Began to experience symptoms in about 2005 with very painful bilateral heel pain for about a year, which turned into excrucuating sciatica on the 1st day after going back to the US (where I was born). This ultimately caused my lower back to go into spasm for 2 days - an x-ray showed decreased disc spaces between L2-S1, diagnosed as "wear and tear" (have a family history of osteoarthritis and diagnosed with early arthritic changes in my C-spine in the late 1970's). Although my GP told me to come back if I experienced any diminished sensation in my right leg (the sciatica initially started in my left leg, before "changing sides"), when this did happen a few months later, prefered to ignore this (probably being awfully prone to using denial, as I was coping all right with it).
Although since about 2005 or so, began experiencing memory problems i.e. forgot how to open up my car boot, taking forever to find my phone, keys, money etc, finding it increasingly difficult to concentrate, always needing more and more time to do anything and having weeks/months where I had no energy at all to do ANYTHING, attributed theses symptoms to "age" (currently 63), having too much on my mind, becoming lazy, developing dementia, Alzheimers, a brain tumour etc, decided to "carry on regardless"!
In March 2013, on my 1st day back (again to the US), developed diplopia (double vision) but again, "carried on regardless", evenn though a day or 2 before the fortnight holiday ended, began to develp intermittent paraesthesia and weakness in all my limbs. About 4 days after returning to the UK, had no choice but to go to my local A+E Dept as my BP was 210/120 and my pulse was over 120 bpm (I am a retired Nurse and College Lecturer). Started on baclofen (the 1st 5mg taken made me feel like my old self - a miracle!) but soon found I had to steadily keep increasing this dosage untill it came to the point where I started developing such severe myoclonic jerks, it looked like I had Tourette's. Changed to 12mg diazepam (2x3 times a day (in May?) and although symptoms much improved, have daily but luckily intermittent, pain, lack of energy, fatigue, incidents of "brain fog", poor spatial awareness, balance issues and muscle fatigue quickly brought on by any activity.
Thanks for this opportunity to "rant" - again finding this Forum soooooo helps in remembering I'm not on my own. So looking forward to "talking" to you all....can't begin to tell you how grateful i am although must admit I have no idea how or if I am using this Forum right!!!!!!!!!!.
Hi
On friday went to hospital, re my bladder, as I keep getting infection, I have always had problems, because I used to have endometrius, and this does cause problems. The specialist was very nice. and though my G.P had written to explain that I had been having cystitus, but it was not responding to treatment, and in the past this had also been the case, she wanted me to have a scan, anyway this specialist disagreed with the G.P and stated that most of their cases like mine, were all MS sufferers, my GPis convinced that I may have stones. So left the hospital discharged from that clinic.
I do find that because of the variety of symptoms found within M.S, most health professionals, are only too pleased to just take the symptoms as probably MS.
Sometime ago, i was having a lot of pain in my back, and put it down to the"MS Hug", anyway I collapsed, as I hadnt been to the doctor, I was diagnosed with Pnuemonia, and this they found was because I had pleurisy.
It is so easy to blame all symptom on MS, but what can we do to safeguard ourselves, I know that the health service is over stretched, but surely its safer to have things checked out, rather than write us off, you then feel as if you are a Hypochondriac, fussing and wasting the medical staff and the limited resources. I just dont know what the answer is.Holly
Wow! This was such an easy site to 'join', and it looks as if it's brilliant and easy to use.
I have used 'the other' site for some time, but found all the so-called improvements were awful and luckily several people on that site recommended this one. Thank you to them.
It's my husband who has MS but I do like to keep up with all the posts and find them interesting and useful. I am 63, he is 66, and he was diagnosed with PPMS in 1996. Unfortunately he has got much worse over the past 10 years and is now unable to do anything from the neck down and requires somebody around 24 hours a day. Not what we had planned for our retirement, but we count ourselves lucky that he reached 50 before this b****r started to really take hold.
We have three children and four grandchildren who live quite close by and are a wonderful support, both practically and emotionally. Our friends are great too and keep us laughing. Unfortunately OH has difficulty in speaking now, but happily listens to all the jokes and banter that they bring with them!
Looking forward to getting to know you all.
June
x
Mod's note - I've split the below from this topic - http://ms-people.com/forum/topic/11108-one-year-ago/ as the last post in that topic was almost a year ago, and Hairoil's post might be better in a new topic.
hi Tania. I have just recently been told i have ms, i know exactly where your coming from with your comments. Got any good tips for someone who's just found out they have ms?
Hi all, my names Bec and i'm a 40 year old married mum of 3 teenagers.
I was admitted to hospital this year with right hand and arm numbness as well as weakness in the whole of my right side. All the results came back clear and i left hospital thinking it was "just one of those things". I went back to work after two weeks and within another two weeks my right shin and foot had gone numb, i was exhausted all of the time and my memory and word recall mid conversation was very noticable and embarrassing. An emergency visit to my GP resulted in me being signed off work and told not to drive. That same weekend i struggled with walking and couldn't manage the stairs, my son and husband carried me to bed :(.
Since then i've developed severe dizziness, sickness and nausea and feel like i'm walking in quicksand.
I have an appointment with the neurologist on the 28th of this month and have spent alot of time researching MS and do feel i have in the past or recently displayed most of the symptoms and have written a daily diary and a prior symptoms list going back at least 10 years. The last thing i want the neurologist to think is that i've self diagnosed and sound like a hypochondriac!
I'm having a bad time at the moment accepting all of this and so are my family. Any help and advice on what to ask the neurologist and how to approach my "self diagnosis" will be greatly appreciated. :)
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