One point on your last statement: "we start to talk about treatment with significant relapse number". This seems very backwards. ALL MS patients should be on preventative medication. Once the damage is done IT"S TOO LATE. Yes you may "look fine" and be able to manage with daily life but you may be accumulating serious lesion damage that is invisible. Only later on 10-20 years later when atrophy starts to kick in do you find you your brain no longer has the functional reserves to cope / pick up the slack from damaged areas.
I was rather unlucky... my very first relapse led to permanent left eye blindness. Not just days or weeks sadly. Strange thing is prior to this I had never had any symptoms of MS whatsoever. My first attack of MS came 2-3 weeks after a covid infection. Diagnosis soon after as with the blindness I was put straight into an MRI where they found lesions.
Did anyone or still is ongoing ! Suffer with knee buckling? Can’t stand on tip toes ? Can’t stand on back of heels? Myself crutches,balance issues. Otherwise trying the above will just collapse on floor . Also right foot drop? Thanks in advance 🏴
At 39 I had a spinal tsp.tap.. hurt like 👍 hell then mri right after. ✅️ truthful 👍 ✝️ ♥️ hang in there ya'll we're ms warriors not only that but we have made it this far. AMEN 💯 TRUTH
The first time i got really worried by my ms symptoms, (before i was diagnosed) i had numb arm and leg on one side of my body. Once i finished explaining my symptoms to the doc, they asked me. "What do you want me to do about it?" I ingnored it after that. Every time it came. Im diagnosed now but i could have had more support over the last 3 years.
@@skippygotrobbed Yes! I am going to annoy the neurologist who I saw 6months ago. She did not do any of the neurological examinations for me. Else she would have MAYBE found my Babinski reflecs. Instead of mighty neurologist, it was lowly general intern who flicked my middle fingers in A&E and saw it. LOL that is BAD 😅🤣
I was asked the same question: "What do you want me to do about them?" I realised later that the only correct answer would be: *"Your job!"* And if they were not folding in to do something, then continue with: "If You do lack the professional level and willingness to help me; perhaps refer me forward to collegue above you. Thanks." "And perhaps it would be advicable for you to think on your career choices and compassion." But of course,you are never ready for the sh** when it is thrown at you the first time.
On the genetic factor when you talk about twins: perhaps there is a "higher risk " for the twin but could this not also be explained by likely having identical conditions when growing up? Similar food / house / exercise routines / location (in terms of sun exposure/vit d) etc. All of the variables could lead to a generally higher risk for both if they have the same living conditions. Could the genetic risk factor of relatives being more likely to have MS rather be misconstrued with having the same background / epigenetic triggers? So yes a relative may have higher risk, but not for genetic factors, rather similar circumstances perhaps leading to MS development...
Depending of the country they can not refuse direct request for a specific test. But better way would be to reguest a review of their reasons to differential diagnosis of fibromyalgia etc. And I heard this from somebody else, ask them to explain to you *why it can not be any other condition?* Also ask *a plan*. Plan is what they are trained to do. "What is your plan for going forward with my care?" "Can I have it written down?" You come across like medically educated patient who may do an official complain if not followed protocol. They have a protocol which they should follow. Also, physical neurological exam (well done takes multiple tests and takes time. Research it!) Is pretty accurate too for finding some type of neurological damage which ms does. So hope you do not have that, but something else autoimmunal. Also, nerve conduction studies could test for some nerve damage. TAKE A MAN with you to the next appointment (borrow somebody's husband and introduce them as your friend. Best if they wear something smart. They do not need to talk.). Track your symptoms and take them with you. Fibromyalgia is very crappy diagnosis and hard to get away from. It is nearly equal to my diagnosis of drug seeking hypochondriac. I am not, but so they all treat me. And do not give up. It is not your fault that you are being dismissed; you have met just really unprofessional doctors. But you never know when you hit the jackpot with them and you will be moved forward!
@@SatumainenOlento thank you. I actually don’t know any men lol. I live in the UK. I’m a foreigner and feel weird demanding/asking for things. I have tried asking for a treatment plan. I shall do even more research on the neuro side. Cheers
Hi everyone , i dont know if i am a bit worked up about the possibilities of me developing MS , I've had spondylosis a while and also cervical and lumbar stenosis , i am a bit apprehensive about possible spine surgery fusion or whatever the neurologist/surgeon think is best but i have a few different symptoms that i really dont know are myelopathy from stenosis or demyelination to do with MS , i have done some research and found that these can coexist which i really hope isnt the case because no surgeon would come near me , i mean it is pretty vague when it comes to cervical stenosis , medically they have done tests yeah but not very convincing if having stenosis actually makes you susceptible to developing MS , i am shiting myself to have another MRI incase they see lesions , i can deal with stenosis part because i can get my head round the surgery but not having both and not having either corrected with exception to a load of meds , anybody any advice please or more knowledge ?
Hmm, well I feel a bit better now. You didn't mention terrible stiffness in both legs, so maybe I'm worried about nothing. I'm on a waiting list to even see a neurologist and I was worried about MS, but my aura without headaches and bizarre leg stiffness doesn't sound like a match 🙂
