Hi all, I’m new to the forum. Long story short is I’ve been struggling for 3 years now without a diagnosis and I’m progressively getting worse. I see my neuro every 3 months and he’s calling me his fascinating mystery!! He has asked me to research different potential diagnosis such as inter cranial hypotension, hashimoto’s encephalopathy and also ms. Out of all these it appears I have roughly 14 out of 18 ms symptoms. I’m really struggling and virtually have no life. I’m only 34 and find it so difficult to do tasks such as getting washed at times. My MRI stated no significant abnormalities and eeg was clear. I seen my gp last week and he’s convinced it’s ms. There have been times when ms has been mentioned by my neuro then it’s dismissed again. I really just don’t know what t do, is the lumbar puncture an accurate way for diagnosis? Any help is much appreciated x
hi danielle
sorry that you are having such a bad time.
it is good that you see your neuro every 3 months because he is obviously taking it seriously.
he will be trying to rule out other possible causes of your symptoms.
MRI is usually how MS is diagnosed with a Lumbar Puncture to confirm it.
an occupational therapist could give you help in your home (eg grab rails in your shower/bath).
has your neuro mentioned an ms nurse?
carole x
Hi Carole,
thanks for the reply. The neuro is apparently the best there is here in Belfast he is trying to rule out every other possible diagnosis. This all started by me shaking uncontrollably one day in work, which results in me being in hospital for nearly a month. I was taking seizures or myoclonic jerks but was fully conscious each time. I’ve had so many tests done but nothing is showing up. Over the last year I’ve deteriorated rapidly I use walking aids and have a wheelchair. My legs are so restless and painful most days, I also have bowel problems, numbness, memory issues along with a whole host of other ms symptoms. I’ve had a blood patch done on my spine in case there was any leakage in the spinal fluid, it didn’t work the first time but I’m waiting to have it done again. My OT is brilliant she has sorted everything around the house for me.
No no mention of an ms nurse at all. I was with my own gp last week and he seen me trailing my leg and noticed my deterioration. We have a pretty good relationship and I asked him his thoughts he told me ms. I’m just so frustrated because I’m not getting and relief at all and I just want to right medication so that I can try to have done sort of life, rather than being stuck at home looking st four walls all day.
Danielle x
hi danielle
i’m glad that you have had help from an OT.
since you’re a neurology patient, is Neuro Rehab available to you?
they offer physiotherapy and it is vital to keep your muscles going until your central nervous system is sorted.
there are many chair based exercises, some using stretchy bands.
maybe if you or your GP emailed the hospital where your neuro is based, you could ask about an ms nurse.
for now exercise your feet. point your toes towards yourself, then point them away.
take care and try to keep your spirits up
carole x
Thanks Carole, they won’t allow me Physio until I have a firm diagnosis but I must ask at my next appointment about neuro rehab. Thanks for the tips I’ll try those when my legs are playing up. Xx
if you can get hold of those stretchy bands, they are great for putting under your toes to push against.
have a google for exercise bands and exercises using exercise bands.
they only cost about £8 from a sports shop.
oh and magnesium oil for cramp or spasms is a must buy.
good luck
carole x
I identify with you as I was a huge ? to the medics in my first few years…I was 45 then and 64 now!
I saw a different neuro every 6 months at first and yearly ever since.
PPMS was suspected for several years and even wrongly diagnosed for 8!!!
My current diagnosis is unproven as yet. I`m awaiting the results of genetic testing for hereditary spastic paraplegia.
Limbo is the pits!
pollsx