Ive today received a letter from my neurologist at Salford Royal saying that he has brought my next appointment forward by almost a month for three extra MRI scans, Brain, Cervical and Thoracic. I’m not sure whether this means that my 1st scans that were taken at Stepping Hill Hospital at the end of November have found something which he needs to review or whether they were unclear. Unfortunately at my 1st scans I had a seizure and the Radiographer said that even though he thought that he had enough pictures to send to the neuro, I may need further scans. My GP had to contact my neurologist several weeks ago due to the rapid onset of my symptoms hence my appt being brought forward as well as an ‘episode’ in the surgery. She read through the neurologists original report and stated that it was quite worrying. Not exactly good with my mental state but I’d rather know the truth than having it sugar coated.
I have recently been placed with a very nice occupational therapist who assessed my needs at home and referred me to adult social care, I will have home help 3 times a week for basic things such as bathing and dressing.
I have recently developed a new symptom which I had never heard of until my OT told me about them, an ‘Absence Seizure’ which lasted 5-10 minutes. This has happened twice in a month.
Has anyone else had this type of seizure either as an MS symptom of EPY symptom?
Thanks
Dan
Hi Dan, I read your post with interest and concern for you.
I just wonder why you cant have one full body scan instead of 3 separate area ones.I have had full body and shorter ones too.
If going in an MRI scanner causes you anxiety and possible seizures too, it makes sense to reduce your worry, by doing a full scan, doesn`t it?
I cant be sure, but dont hink it is common to have seizures in MS. Have you been diagnosed with epilepsy?
I`m really pleased to hear that your OT has arranged personal care for you. I have this too and it is a marvelous help.
Look after yourself.
luv Pollx
Hi Poll, thanks for your reply,
I have never been tested or diagnosed with Epilipsy, however I have read that epileptic seizures are three to six times more prevalent in those who have multiple sclerosis (MS) than in the general population (those who don’t have MS). Maybe this is why they are doing the three separate area scans. Most of my symptoms are pointing more towards MS, especially the spasms and spasticity throughout my body when I have an attack, severe p&n, diplopia. I have unfortunately since Christmas lost the remaining mobility I had, I am wheelchair bound now except at home when I can just about manage to stagger from one room to the next in great discomfort. My mother is my full time carer so the extra support when the 3 times weekly help comes will be a great boost for us both.
It is also possible to have both conditions which I am dreading may be the outcome. No matter what I will battle forth and not let either of these get the better of me.
My scans are 4 weeks from today on the 26th, so it’ll give me time to at least prepare for them. Ive read that some people have had many scans before a diagnosis is made and was warned by my neuro that it could take years, one lady said she’d had at least 12 MRI scans.
Over the past 5 Months since I last saw my neurologist I have kept a diary of when I have an attack and of any new symptoms which appear.
Any way the only thing is to try to keep a PMA and keep open minded.
Best Wishes
Dan
Hi Poll, thanks for your reply,
I have never been tested or diagnosed with Epilipsy, however I have read that epileptic seizures are three to six times more prevalent in those who have multiple sclerosis (MS) than in the general population (those who don’t have MS). Maybe this is why they are doing the three separate area scans. Most of my symptoms are pointing more towards MS, especially the spasms and spasticity throughout my body when I have an attack, severe p&n, diplopia. I have unfortunately since Christmas lost the remaining mobility I had, I am wheelchair bound now except at home when I can just about manage to stagger from one room to the next in great discomfort. My mother is my full time carer so the extra support when the 3 times weekly help comes will be a great boost for us both.
It is also possible to have both conditions which I am dreading may be the outcome. No matter what I will battle forth and not let either of these get the better of me.
My scans are 4 weeks from today on the 26th, so it’ll give me time to at least prepare for them. Ive read that some people have had many scans before a diagnosis is made and was warned by my neuro that it could take years, one lady said she’d had at least 12 MRI scans.
Over the past 5 Months since I last saw my neurologist I have kept a diary of when I have an attack and of any new symptoms which appear.
Any way the only thing is to try to keep a PMA and keep open minded.
Best Wishes
Dan
Hi Dan, I had MRI scans of my brain, thoracic spine and cervical spine, all done in one session. One appointment, one session lying in the scanner but three scans. I was told it could take up to an hour but in the event it was all over in a bit over half an hour. I hope this helps ease some of your worries.
My neuro explained to me that a diagnosis of MS is based on seeing a certain number of demylination plaques in the brain (I think he said 9 but don’t quote me) or fewer in the brain plus some in the spine. He also sent me for an evoked potential test, which was like an ECG of the brain (painless, just have the leads attached and watch a moving image on a TV screen while they recorded the brain activity), and a lumbar puncture (to look for markers in the cerebro-spinal fluid). When he put all the results together with the tests he did on me (reflexes, balance etc) it added up to a definite diagnosis.
I can’t help regarding the seizures.
Keeping a symptom diary is an excellent idea and should help your neuro get you some answers.
Best wishes,
Mitzi