Patients Multiple sclerosis
Topic of the discussion
Posted on 23/07/2014 11:15
Hi i'm Daz from Manchester. I was diagnosed with RRMS in 2007 And have tried CCSVI, amalgam removal LDN B12 injections and would like to hear other peoples attempts at trying to find symptom relief. For the past 18 months i have suffered with chronic fatigue visual and coordination problems which have unfortunately forced me out of work. please share your adventures for finding relief failed and successful attempts with me. I would like to have other peoples opinions of what helps you with this condition. Any questions you have for me I'm happy to answer
Beginning of the discussion - 25/07/2014MS and where to go next https://www.carenity.co.uk/forum/multiple-sclerosis/living-with-multiple-sclerosis/ms-and-where-to-go-next-68
Posted on 25/07/2014 10:23
Hello Daz. I am still quite new to MS and struggling with my balance and fatigue. I am very interested in CCSVI and have read a lot about it, both good and bad.. How was your experience? So far I have not been experimenting with symptom relief. Think I am still a bit ovewhelmed with the situation! But I have found out that my fatigue gets worse when it's really hot, so I try and stay "cool". Got A/C at home now and always bring something cold to drink when I go out in the heat.
Posted on 26/07/2014 16:39
my experience with ccsvi was good but only for 2 an a half months. I did not get instant relief from the ballooning like others have. The day after the procedure I noticed a vast improvement with my vision an energy levels. when the blood thinning meds came to an end my symptoms started to return. I contenplated returning to Ameds in Poland to have another go but thought better with the cost involved and the fact that I felt better with my blood thinner on meds Which has led me to start looking into my c1-c2 (atlas-axis) bones because my symptoms started a few months after an accident I had involving me been thrown up against a windscreen. Wise move not to wear a seatbelt but i was only driving a digger. I'm led down this path due to experiencing clicking of the jaw then jaw lock. If you have ever experienced either of these likely thing is this bone has moved. The medics solution is to grind your jaw bone down but the jaw hasn't moved unless you have broken it. I personally am not having any luck getting my nurse, neurologist, gp to do an open mouth x-Ray an ct scan. they will only do an MRI which can't always see what they need to look for. A bit long winded but it'll give you something to read :-). Good move with the AC I need one. heat intolerance started affecting me about a year ago. The human body is Just like a car engine good water flow cools the engine
Posted on 26/07/2014 16:56
Don't get me wrong I'm not advising anyone to go out an buy aspirin as it has a tendency of causing stomach ulcers and 75ml a day will not show improvements Eat foods with blood thinning tendencies like omega 3 foods they can help with the blood and it's healthy
Posted on 01/08/2014 12:35
Thanks for the explanation :) I have also been checking out Ameds! But they also told me that it's only possible to to the surgery up to 3 times in a lifetime (if I remember correctly). The veins will become too worn from more surgeries, so I figured I will keep it as a "last resort" if my symptoms get too severe. At the moment I can manage, so rather safe my 3 shots. Sorry to hear it didn't work for you, but at least you got something out of it - the blood thinners! I haven't heard about that before, but of course it makes sense. Definitely something I will talk to my doc about. Thanks for the tips on blood thinning foods, I'll look into that.
Sounds terrible with your jaw. I really hope that you can convince someone to do an x-ray/CT scan.. I find that sometimes it is a bigger struggle to fight "the system" than fighting the MS!
Posted on 01/08/2014 20:59
MS used to be treated with blood thinners years ago So likeliness is anyone will feel good whilst on them After the ccsvi Well maybe not all but the majority.
I went for my ct scan today that I paid for myself because my neurologist wouldnt do it for me. I have a DVD of it and something's don't look right on it but il leave it to the pros to look at it.
Posted on 11/08/2014 14:47
I can't believe I never knew about the blood thinners! Again, thank you for that tip. I have studied it a bit now and already trying to implement blood thinning foods in my diet.
Great that you got a scan, even though you had to pay for it yourself. I really hope you can finally get a professional to listen to you!
Best of luck!
Posted on 06/05/2015 18:39
Hey guys don't forget about this conversation! It is really interesting and with a lot of content!
Remember that sharing can help us all to cope and prevent!
All the best,