Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hello everyone,
Thank you for letting me join this community.
I am from New Zealand, 53 years old, and have struggled with various neurological symptoms coming and going since having Viral Meningitis ten years ago,, and then had a Vertigo drop attack which fractured my cervical spine. Was later diagnosed with Fibromyalgia because no doctor really had a name for ongoing symptoms, but have managed to work and travel, lead a relatively functional life with the help of pain killers,as far as possible, and emigrated to Europe in 2013 where I work as a Business Trainer.
Roll on to this year when some weird new symptoms emerged recently, which doctors thought might be middle ear related and I was treated for Meniere's disease. I have 24/7 Tinnitus, balance issues, vertigo, dizzy spells and they tried me on Prednisone. A few weeks after this started, my legs stopped working properly and I went from being someone who could easily walk for 3-4 hours in the evenings and go for reasonably long bike rides, to feeling disabled. I had the return of constant numbness and tingling in my limbs (which I used to have some years back ) but the overwhelming fatigue has been the worst!
I could easily sleep half the day and can't cope with my usual routine at all. Ive stayed at home most of the summer feeling so depressed and sluggish, as even a short walk totally exhausts me.My legs are so wobbly and weak.
After seeing ENT specialist my GP sent me to a specialist at the local hospital and yesterday after going through all my health history and asking questions, he thinks it could be MS.
Obviously I have to have a lot of tests and MRI"s before they can confirm so, just at the beginning stage. I just needed to check in here and say hello, because I am feeling in the shock stage (burst into tears when I heard this diagnosis yesterday) - I know so little about this disease and don't know what to expect or how long it will take to get a firm diagnosis? but most of all- how to people cope with this fatigue? its shocking!
Thanks for reading and hope we can support each other.
Carmel
Thank you for letting me join this community.
I am from New Zealand, 53 years old, and have struggled with various neurological symptoms coming and going since having Viral Meningitis ten years ago,, and then had a Vertigo drop attack which fractured my cervical spine. Was later diagnosed with Fibromyalgia because no doctor really had a name for ongoing symptoms, but have managed to work and travel, lead a relatively functional life with the help of pain killers,as far as possible, and emigrated to Europe in 2013 where I work as a Business Trainer.
Roll on to this year when some weird new symptoms emerged recently, which doctors thought might be middle ear related and I was treated for Meniere's disease. I have 24/7 Tinnitus, balance issues, vertigo, dizzy spells and they tried me on Prednisone. A few weeks after this started, my legs stopped working properly and I went from being someone who could easily walk for 3-4 hours in the evenings and go for reasonably long bike rides, to feeling disabled. I had the return of constant numbness and tingling in my limbs (which I used to have some years back ) but the overwhelming fatigue has been the worst!
I could easily sleep half the day and can't cope with my usual routine at all. Ive stayed at home most of the summer feeling so depressed and sluggish, as even a short walk totally exhausts me.My legs are so wobbly and weak.
After seeing ENT specialist my GP sent me to a specialist at the local hospital and yesterday after going through all my health history and asking questions, he thinks it could be MS.
Obviously I have to have a lot of tests and MRI"s before they can confirm so, just at the beginning stage. I just needed to check in here and say hello, because I am feeling in the shock stage (burst into tears when I heard this diagnosis yesterday) - I know so little about this disease and don't know what to expect or how long it will take to get a firm diagnosis? but most of all- how to people cope with this fatigue? its shocking!
Thanks for reading and hope we can support each other.
Carmel
We can all relate on the fatigue, for many it's the worst thing. You'll finds ways to conserve energy, Plan around it and just hang on through it some days. There is good advice out there from MSAA and others on ways to cope with the fatigue thing. Hopefully some of the veterans on DS will chime in and shorten your learning curve.
Good luck and keep us posted. Hoping it is something else...
The Spoon Theory is a good way to remember what you can and can't do, and to explain the fatigue to others:
http://www.medhelp.org/posts/Multiple-Sclerosis/The-Spoon-Theory/show/330233 It's akin to the gas tank story. Everyone else gets a full tank of gas every morning, and you only get 1 or 2 gallons, so you have to plan and use it wisely.
For fatigue, I take Provigil (Modafinil is the generic) in the morning. Supplements that work for some people are CoQ10 and Vitamin B-12. There's a lot of trial and error with MS- you just have to find out what works for you.
You may also want to try physical therapy. It may sound counter-intuitive to exercise to reduce fatigue, but leg strengthening exercises can be beneficial. The more you do, the more you are able to do.
I'll write another post later, but I just used up a spoon :0)
i was kind of on pins all day wondering if anyone would reply - its always a bit awkward dropping into an established group as a newbie ;)
Thanks for the tips about the Spoon Theory, Day 1 of this new life my partner has been understanding about my exhaustion and need to sleep more, so I hope it stays that way.
sAmazonmom, they have not started me on any meds yet since the diagnosis may take months. First I have to see another neurologist in another town (a bit anxious about hat since Ive rarely had good communication with neurologists and they say very little in my experience ) then I have a spinal MRI late next month and scheduled to have a brain MRI on 1st October. My specialist at the hospital (who seems to be a lovely doctor) said he will not start a programme of therapy until he gets the results.
Thanks again, and I already feel a lot better knowing you are all there and a good resource for information and support through this scary journey.
Hello Anne8
I live in south Germany, lecturer in Business English for University of Heilbronn and for local tech firms. I am barely scraping a B1 in my German language though, can communicate OK with my partner, so it can feel a bit lonely and isolating when you can't integrate well with your community or make friends easily. I was doing reasonably OK until I became unwell recently and now with the symptoms have lost confidence and energy.
We plan to move to NZ next year so I can be close to my family and friends again. How are you finding things in Spain?
I'm curious as to why your MRIs are being done on separate days. Once you're in the machine they can do the brain and C-spine at the same visit. Maybe that's just how it's done in Europe. Just be sure that they do it with and without contrast.
As for the timeline, I had my MRIs less than two weeks after I saw my new - and current - neuro. Less than two months later I had a spinal tap to confirm, and he gave me the unhappy results eight days later.
I was fortunate that when my spinal tap was scheduled, my neuro told me what he was looking for and what he suspected, so I was prepared and didn't experience the shock that others have when I received my dx. I am grateful to my neuro for that.
Jill
Thanks for your comments. The specialist told me that they were different types of MRI's, in one they will look at the lumbar spine (have already had several cervical spine MRI's recently due to the disc fractures). I had to find appointments for times I wasn't teaching too, which took ages. I don't know about the 'With and Without' contrast thing, I dont know how I could ask for that in another language when my German is so limited, or if they would even understand. Dealing with another language is very stressful and exhausting with the fatigue and depression of this illness, which is why I want to go home now. I also struggle now with organising all the complex paperwork and applications so my partner can come back with me to NZ, pus not knowing the probable progress of MS and what kind I might have, its hard to plan for the future and make good decisions. As I already had degenerative disc disease and fibromyalgia, being in my mid-50;s, I think having MS on top of that I have to be pragmatic about what I can and can't do, and not take on any further commitments. Phew!
Gadolinium is a contrast agent "used to improve the visibility of internal body structures" in MRIs. I got the info from Wikipedia. They do the MRI, then give you Gadolinium intravenously, and do the MRI again. Your neuro needs to write it on the order.
If you haven't had one, there's no way to know what to ask for. That's the great thing about this group. Those who have been here awhile are happy to pass on what we've learned.
Jill
Wow, I had no idea about this Gadolinium, had never even heard of it.
I fear it could be too late as both MRI's have already been booked and the paperwork put through. it already took 6 weeks to wait and see the specialist who ordered them so he is difficult to get hold of. I am very bad at making phone calls in German too, which is why Im struggling with being unwell here :(
Yes, I agree, this group is fantastic :)
As your doctor is writing the prescription, he will prescribe with/without contrast if this is his preference. You needn't worry that something wasn't prescribed because you didn't know what to question.
I had a good meeting with my General Practitioner yesterday and he explained the whole diagnosis process very well to me. Yes, they will be using a contrast agent for the MRI and that is why I have to have special blood tests 2 weeks beforehand to test (Liver or Kidney?) function?
The next big hurdle has been finding a good neurologist who has to give the report on the MRI (scheduled for 1st October). I didnt want to go to the practice I'd been to before in our small town as the Neurologist there was so rude and aggressive last time I went. We tried another practice but they told me I wouldnt get an appointment until 2016!
Also having communication problems due to language barrier. One of my lovely English students put me in touch with a friend of her mothers who has MS and has been a valuable source of information and she recommended a good neurologist. Sure we have to drive to another town, but my partner called this morning (as the receptionist didnt speak any English) and managed to convey how important it was that we got this report before 2016 and eventually they agreed to see me in early October - major achievement!
nervous about this appointment but wish me luck :)
I am an English teacher teaching business English for the last couple of years in a private university. I have been here a long time (almost 18 years) and my Spanish has 'fossilised' at a B2, so understand most things, am not perfect, but generally can more than get by. This is a good place to come to find out about this disease. I was really freaked out about it for awhile, but my diagnosis was 6 years ago, and more or less deal with it.
My advice is, don't read posts that start to scare you, take in things a bit at a time.
Good luck with your doc visits, at least you're in Germany, full of more than competent professionals. (I have a doctor friend living in the Heidelberg area.)
Thats very interesting because its almost exactly what I do for a living here in Germany. My partner luckily found an apartment right next door to the university campus, so I only have to walk a few hundred metres to my classroom :) However, there is a rule in our state here that you can't employ a lecturer for more than 8 teaching hours in any one week or they can claim employee status, and all the health, pension and insurance benefits which go with it. Therefore all of us have to find other freelance work to get by and pay our own health insurance which is expensive. Plus we only get paid once in the semester, so we need to find another form of income or a bank loan.
I don't know how much longer I can hang on here as the system is so complicated and due to a miscommunication with my health insurance company (who refuse to explain anything in English) they froze my bank account and credit cards, Ive lost my overdraft and credit facilities here so a lot of stress when Im feeling extreme fatigue and unwell. My brain doesn't seem to work like it used to :(
Im hoping I can afford to stay here long enough to get a diagnosis of whatever neurological condition I have, and maybe start a treatment plan. Ive heard that there is good treatment here if you can get into the system and find a good neurologist - wish me luck!