Never give up, no matter how frustrating it is. You may or may not have MS, but obviously something is wrong. You know this. Keep trying, even if it means switching doctors on a regular basis. Sooner or later someone will listen and figure it out.
I actually don’t think it is usual MS. I think it might be a rare reaction to the vaccine called CIDP (vaccines are known to cause it, some say it is a form of MS). Makes the most sense out of all the conditions I’ve read and the disease course so far over the past 13 weeks. What annoys me is that it states in the research literature that early treatment is essential to stop spread of nerve damage and irreversible neuropathy. Meanwhile I get fobbed off by multiple doctors and the neurologist makes no effort and says I must be dreaming it because vaccines don’t cause illness… At the moment, I can no longer play guitar (was a musician), can only go running on evenings where ‘Mabel’ isn’t causing sensory weakness, and can’t type for more than 15 minutes (my job requires multiple lengthy clinical reports and research papers), and now potentially it is going to wreck my love life. What am I to do Most of you will prob say “Join the club!”
I just thought I’d let you into my thought processes as I too have had to find my own way as I was getting nowhere with neurologists and to getting a diagnosis. I wasn’t just going to sit there for years whilst my condition gradually worsened though. (I may at last have found a good neurologist so a diagnosis may be getting closer.)
It seems that driving most chronic illness is oxidative stress and mitochondrial dysfunction. Google can be very useful here. Think of just about any chronic illness, neurological condition, autoimmune condition and google it with mitochondrial dysfunction or oxidative stress and you’ll soon get the picture.
Without a diagnosis but with this knowledge you have a starting point. Look into what is happening to cells when they are subjected to oxidative stress. Look to see how you can reduce oxidative stress and look into what herbs and supplements are good, safe antioxidants. Similarly with mitochondrial dysfunction. And for neurological conditions look at what is needed for enabling regeneration of axons.
This patent submitted for neutraceutical treatment for Parkinson’s Disease goes into the full range of degenerative processes that go on in the central nervous system and ties them in with scientific papers for in vitro or in vivo evidence of the positive effects of a huge range of different herbs, supplements, in countering the chemical changes that drive the degeneration. Many of the degenerative processes are common to many / most neurological conditions, and are not just specific to Parkinson’s disease, so this does have wider relevance.
You’ll notice that a number of the herbs, spices, supplements seem to work positively to counter a good number of the degenerative processes, and that there are many to choose from. All the scientific journals are referenced. This was done in 2010. There have been many more papers since. I found it fascinating, and a great resource, though you do need a scientific mind and probably need to be rather nerdy! She’s done all the hard work bringing all those papers together, as well as explaining those processes.
As you sound as if you are used to reading scientific journals I thought this might be up your street, should you decide to plough you own route into your treatment.
Forgive me are you saying you have had these rare things for 13 weeks? I had my symptoms from 2000 to 2016 before i got diagnsoed with MS.
I am not convinced it can trigger things like you describe. in 2015 this was written so way before the advent of covid. Its a very good read actually and defines neurological damage via vaccines (all) do the urban legend bin.
Now i think personally if you have something neurological going on have a vaccine may actually STIR UP your nervous system and make you feel worse, so that in itself could be a clue to what ails you.
I dont know your story, but i do know this, and have said it before.
Never to see a doctor with a LIST of neuro things because they will just look at the list and put you under the heading of ANXIOUS PERSON. They way to get heard is to sit down calmly and only concentrate on the things which are really causing you the main issues. You say your a musician and cant play guitar anymore WHY. SO that is number 1. Is it down to numb fingers?
You can only run in the evenings (I wish) why?
You cant type for more then 15 minutes why?
You say its POTENTIALLY going to wreck your love life why?
I shant say join the club, but i will say you need to look at what ails you in the main. If its vaccine say it will get better as there wont be demylinating involved.
early treatment is a myth as sometimes people suffer with MS for years before they get diagnosed and then go onto DMD and cope fine.
I personally would look at diet as well. Make sure you are eating healthy, you could be low in vital vitimins and minerals all those things can be down to vague neuro symptoms. B12, Vitimin D, magneseium.
I feel for you as nothing worse then being fobbed off, have you actually thought you may have had Covid and this is why you are now experiencing some residual effects from the disease itself if that is the vaccine you are talking about, as i have a friend in the states who had Covid and had some weird stuff from long term covid.
IF the symptoms started before vaccine then the vaccine could have exacerbated it. It is a long road to getting a diagnosis of MS believe me a lot of us on here can say JOIN THE CLUB. x
I think you instinct to step back a little is a good one. Crazy Chick has given you some very useful pointers. Please don’t take your diagnosis fences before you reach them. It gets on the medics’ nerves and, as Crazy Chick has said, tempts them to think of you as an hysteric, particularly if the thing you think you have the matter with you doesn’t even officially exist. It’s bad enough getting them to take you seriously when you think you have something conventional like garden-variety MS, as many on here will attest. So my advice would be to keep calm, keep notes, seek medical advice with an open mind and no pre-conceptions and let the medics do their job.