My names Claire i’m 42 years old and am currently going through the process of being tested for MS.
I was diagnosed dec 2015 with a b12 def and have been having treatment for that but my symptoms are getting worse, so was referred to a neurologist and saw him on July 11th and he has requested a mri head, spine cervical, spine lumbar and spine thoracic to be done which I am having on Tuesday next week, and then also he has requested a lumber puncture.
I have tingling and numbness in my hands for years which by the time I realised was a problem I got used to the sensation but in last 12 months my balance and coordination and mobility have steadily declined to the point that I am falling over my own feet and dragging my right foot around most days.
I am more recently suffering from confusion, muddling my words up and on occasions slurring, my eyes are also blurry some days, I am scared of a diagnosis of MS but at the same time are living with this ?? daily and have a need to know what’s wrong with me. this is effecting my marriage of 23 years as I am short tempered and whilst once was highly sexed now only perform so to speak, out of guilt (although my spouse never applies pressure) the guilt is all mine.
just came on here basically because I don’t want to put more pressure on my family by off loading my fears on them, will I ever be able to walk again for periods of more than 10 mins slowly or is the start of the end of my mobility, i’m trying to remain positive but its getting so hard.
thanks for taking the time to read this, would appreciate any advise
Hi Claire, I too am at the start of the diagnosis process after years of ignoring and getting used to various symptoms. Can’t answer your question, but I have found lots of support here.
You’re very courageous facing your fears like this. I hope your diagnosis isn’t MS, however, if it is, it’s not the end of the world.
With a choice of medication for different symptoms and an exercise regime that suites us, the vast majority of us live quite fulfilling and happy lives.
It just takes a positive attitude and being prepared to make compromises. These are needed to get around the things that we took for granted. Activities need rather more planning than before because of a disease that is mainly, very annoying
I do Tai Chi. I draw and paint. The patio is my garden. I go sailing on the three masted sailing ship “Tenacious”. I can do whatever I want to do. I just don’t do it the way other people do it. I’m not disabled, I’m “neurologically different”.
Do I want to be normal? No, I want to be amazing.
(Thanks to Francesca Martinez for the philosophy. Look her up; she’s amazing too).
you have obviously accepted the possibility of a diagnosis of ms.
but it is only a possibility.
whatever the outcome it isn’t a death sentence.
if it IS ms a disease modifying therapy will be offered and you will be asked to choose.
you will also be allocated an ms nurse - true angels.
your current mobility problems can be addressed by neuro podiatry for drop foot (a simple insole for your shoes makes a world of difference) and neuro physiotherapy which will help you to train your legs to behave.
please don’t get too hung up on the negative.
the ms therapy centres are brilliant places so if there is one near to you give it a try.
Thanks for all your replys, it’s nice to know I’ve got somewhere to turn to discuss my fears for the future, i still work full time although 3 days a week from home, couldn’t manage more than two trips up to city each week, I have applied for pip and had my assessment two weeks ago and awaiting decision on that if awarded I can hopefully cut my hours down at work, I am also learning the guitar as my Nuero said I need to find something else to relax other than the gin and ginger ale I love to unwind with, my kids are grown and I envisioned a life for me and Hubby full of trips away and nights out, instead I dream of being able to walk my westie puppy
Fingers crossed that you get some valuable info following the tests. As stated elsewhere getting a diagnosis is not the end of the world it means you can put a label on what is happening to you and with help find the best way forward. I was diagnosed 25 years ago and since then I have learned to cope with stuff that I would have thought of as beyond reasonable at the time. I love Anthony’s notion of being amazing (I will have to work on that one) I do however now understand that the goalposts can shift significantly and I try to make the most out of every “new-normal” change that might occur. This involves some tough and gloomy times but some brilliant times too, (just like all the normal people!!!)
I just wanted to say hello and restate the positive hippy vibe. Diagnosis - and the process of getting to it - can be a scary, lonely time (my journey started this year, I was finally diagnosed 2 months ago and start Lemtrada next week). I found the generally positive stories and outlooks of people of this forum, ShiftMS and various blogs to really help me come to terms with my diagnosis and see a way to the future I automatically assumed I’d lost.
I can honestly say that, even with the diagnosis, I have never felt healthier or happier than I do at the moment. I love my life, my body and my mind and am very hopeful that I’ll be able to keep them all in tact for a good while yet (I’m 37) through looking after my diet, exercising, sleeping well, avoiding too much stress and maintaining a positive outlook - and of course hitting the disease hard and fast with the most effective drug licensed in the UK for active RRMS. I accept that there will be challenges ahead, and I may need to be able to be flexible in exactly how I achieve some dreams - but I’m keeping them. One of them is going on long distance walks and runs with the Viszlas my partner and I hope to get in a few years - so I relate to your comment re the Westie!
when I was first diagnosed this blog (which coincidentally is by a man with two small active dogs!) gave me hope and put me on my chosen path to treatment.
Not even remotely blasé. Incredibly grateful to be receiving it - and grateful for those positive people who had gone before me and posted about it to let me know that this was an option.
Wishing you all the very best with your own treatment.
I know that feeling so well. The fear that even perfectly modest and normal hopes and plans might be dashed that is hard to handle. There’s no cure for that, I’m afraid. For what it’s worth, I think most of us find ourselves more resilient than we feared.
My rather aggressive RRMS - dx 1999 - has been kept fairly quiet in recent years by Tysabri and I am very glad about that. However, there has been some (to put it mildly) necessary adjustment to hopes and plans along the way. On a bad day, my 1999 self would have a fit if she had seen the state I would be in now. On a good day, my 1999 self would have been relieved and happy to know how well I would be in 2016 and how much I would be able to do and how enjoyable life would be and how much fun I would have. Right now, the good days outnumber the bad ones by a substantial margin, and that is all one can ever say of life because no one knows what the future holds.
No one in his right mind would mistake me for Pollyanna, by the way. Private Frazer, or Marvin the Paranoid Android would be closer to the mark.