Hi wobblynic,
Apologies for this long response, are you sitting comfortably?
It’s the unknown fear & fear of the unknown that is so stressful and stress is exactly what we have to avoid! No win…no win. But we worry about all the what ifs. We know worrying is a wasted emotion but we can’t help it!
I’m in a fortunate position, I sincerely mean fortunate nowadays because I know I have PPMS, I know there’s no treatment to stop the continuous brain damage and, at last, I’m at the stage of acceptance. There’s better positions to be in, but this condition doesn’t give options or choices.
10 years ago I thought I was becoming a hyperchondriac. I saw my gp with lots of different symptoms. I saw “Ologists” aplenty & endured many tests. Each department thought they knew what was wrong, no one linked the symptoms, not even my gp!
Meds for vertigo didn’t work 'cos the equilibrium of my cerebellum is affected by the brain damage and not verigo. Headaches are not stress related but due to my left temporal lobe shrinking (dying off). The partial vision isn’t a migraine, it’s because my left eye is 70% blind. My bladder doesn’t empty due to spinal nerve damage and my body did NOT need the TVT operation that a gynaecologist actually performed in 2010. My bowel doesn’t work because the spinal nerves are not telling the bowel muscles to open or close. My food is mashed as I choke on shells of garden peas, ends of chips or pieces of cereal. Nuts & seeds clog my digestive system.
On seeing a Neuro in January 2011, MS was diagnosed 10 months later. Many records were lost, others were factually incorrect!n In August 2016, my Neuro confirmed my MS is PPMS
You really do have my sympathy during this waiting & horrid limbo land. If I suggest staying positive at the stage you’re at, it’s insulting. However, this Monday is bank holiday so you’ll be seeing your own Neuro on the very next working Monday. Each day is one less.
Try to imagine you have the worst diagnosis and prepare a long list of questions. Don’t hold back or think something is trivial or silly. Imagine the scenario and don’t let anyone rush you. Ask about treatments and what options you have for treatments. Imagine the Neuro is still undecided, even though your hands & feet nerves are playing up. Then insist on a second opinion by his\her superior within the next few days!
It will soon be the next working Monday, so be prepared and don’t accept “they” know what’s best, some do, some don’t. Your own body is accurate and your instincts will be too.
Introduce a daily vitamin regime of Vits B, C, D & H (biotin). Omega 3 Fish oils, Magnesium L-Threonate, all after breakfast. These are all nature’s produce without added chemicals.
Please try to plan ahead and take someone with you. Remember it’s taken years for us experts MS’s to be this positive and to make the most of a bad situation.
I could have gone crazy when Dvla revoked my driving licence. Then I realised my travel options of trains, boats & planes. I actually rejoiced when I boarded a bus on my powerchair.
Why or how am I positive? Realistically, what’s the alternative?
This MS Society is fabulous and we’ll all be rooting for you. Take care of you.
Chrissie x
