Hang in there. Listening to you is exactly what happen to me. All my symptoms happened about 3-4 yrs ago. Thanks to my orthopedic doctor he sent me to a neurologist. I have PPMS and it sucks. I to am active I am a martial artist. I teach and train in taekwondo. Having ms gas slowed my martial arts training down a lot. I don't have the balance or stamina anymore. It has made me a bit depressed. Hang in there. I push myself every day until I can barely move, I have to. Good luck to you.
Thank you for the video; these kind of videos by those that suffer should be required viewing for Doctors. I've been going through a decade of Doctors ignoring the symptoms I've been trying to discuss with them, all while my condition has become progressively worse. I pressed the issue last Doctors visit and now I'm on a quarter of a year or longer wait list to see a neurologist. Now I scour videos by MS sufferers to garner information on dealing with this condition as the medical community certainly hasn't been able to or willing to help.
Sorry to hear that I hope you don't have PPMS. My boyfriend was diagnosed with it. It's TOUGH. He has severe cognitive brain fog, he forgets a lot and has trouble with conversation at times, he does have leg numbness at times and severe sleep fatigue. I've encouraged him to work out with me as much as a he can...he is getting ready to start the 1st treatment for PPMS
How old is he? My doctors think I have PPMS but I am undergoing tests this summer. I'm only 19 and I feel like I'm way too young to have a progressive disease. I honestly just want an answer though, so whatever it is, I can treat it and go back to my life.
I will post an update soon with an update but you may want to explore Ehlers-Danlos syndrome. There are several subtypes. Look at the criteria for classical, vascular and hypermobility subtypes. It's genetic, parents have a 50% chance of passing the gene to each child.
Thank you! Four + years in, very debilitated, on precipice of diagnosis .... same experience only walking with a cane and debilitated and still had to be persistent self advocate in order to get traction with medical system, on 5th neurologist! Thank you for putting yourself out there. Sending virtual support.
Hi Thank you for video. I have PPMS and was diagnosed with this about one and a half years ago. It got a lot worse this past summer to where I''ll be needing a walker sooner than later. I get the drunken sailor talk because that is me to a T. Not right off the bat. It takes a bit of walking before that happens, but that amount of time has decreased immensely. I have an elliptical in my apartment which I was told not to use anymore because my foot/leg has fallen off the peddle. I do work out so now I'm looking to see if I can find a treadmill that is inexpensive and apartment size friendly. I work out with weights as well and the difference between my two sides is so noticeable now. And you spoke about stretching! OMG, I feel like I'm about to pass out when I stretch. I do feel alone because these symptoms are fairly new and combined with my depression, a mental health issue, well I sometimes feel like I'm drowning!
Thank you for sharing your journey with all of us, for 6 years I went to drs because of bouts of sudden weakness, odd vision issues, blacking out when mountain climbing and odd pain, finally gave up when the dr gave me a referral to a psychiatrist, stating there was nothing physically wrong. The next black out occurred when I was hiking in Arizona, this time I didn't just get back up, I had been having strokes due to unmanaged PPMS. I pray that whatever the diagnosis turns out to be, that you stay on top of it and continue to thrive.
U and I r so much the same. Mine was vertigo and I knew something was wrong. I too was never sick and never went to the doctor. I was a college athlete and have always workout. Now I do band workouts and walk, but what a difference from my early life.
S-- My prayers are with you. My PPMS formal Dx was in 11/15. By then, however, my level of progression, lesion activity and symptoms were each pretty well advanced. Diagnostic answers thus were clear and readily apparent, as by then, my disease was in full bloom (an odd advantage to procrastination, I guess). Nevertheless, those few weeks were still a nerve-wrecking process for me. Getting the answer (even if positive Dx) seems always to be a form of relief-- at least you'll know. Please keep posting. Best, C
tignall01 C, thanks for your post! I wish you courage in the face of adversity…it is an emotional process to try to come to grips with, that's for sure!
I was told that I have RRMS but I don't believe that it is at that stage. I have major relapes once sometime twice a year. I always have strange feeling in my feet that is very painful, I also have loss of feeling around my chest and my eyes have been attacked twice by my MS, When I found out about having it I had three lesions on my brain and one in my spine. Now I have so many they just refer to them as numerious. So believe that I have PPMS or SPMS.
I feel I'm in the same / similar situation (our MS is NEVER the same right)? I don't feel it's RRMs and know it's progressed with mobility becoming non existent within a year. I was lucky having been diagnosed 19 years ago. I've had to tolerate expensive drugs that just don't work.
Thanks for posting! I, too, feel like one side of my body is normal and the other isn’t. I got a bit too hot on vacation and my legs stopped working! Scary as heck. Managed to sit down on the tile floor of the bathroom and cooled off! I was able to get up and get going about 10 minutes later. I have the tremors and the fatigue, too. Haven’t been diagnosed yet but am heading to Cedars Sinai soon.
Thanks for your post. True about when we go from caregiver to needing care. Terry Wahls Protocol and her videos are informative. Black Seed Oil is said to be very useful. Wim Hof videos are also good to watch. I celebrate your courage. Hope you heal well. Good health to all viewers.🥗💪
Sorry you are going through this. I have AS and the process of trying to get anyone to listen to me was so exhausting. I became anxious about going to the doctor. I still am. I honestly thought they were meant to rule out serious causes first but I found I had to run around to different doctors for years before they realised something was wrong and this was with severe debilitating symptoms. 🤦♀️ I find a lot of health care professionals have no real interest in the job or the patients. During a severe acute attack that almost killed me I was told to be patient because there is nothing they can do right now to help me and the covid pandemic has to come first. I sat there in level 9 pain, weak, exhausted, holding my cane, crying and said to the doctor "this is degrading and negligence". I collapsed when I got home. That night the attack got so severe I blacked out. The next day I started having panic attacks. After that it attacked my liver kidneys bowel eye etc and then triggered ptsd and psychosis. They could have stopped this attack with steroids. I've lost trust in healthcare. Sorry to ramble on lol. I just hope they realise that patients need to be taken more seriously
Hay. thanks for your video diary. I am away to get tested when I hit the UK. I am very worried as I have seen first hand what MS can do. My symptoms are many and within 8 weeks am getting more and more. Best of luck and hope you stay well X
Welcome to the club. Diagnosed 3 year ago. No change since that time with a lot of efforts. Walking 2 miles maximum balance problem. Vision disturbed well I could continue. Important is the mental. Fight!
I'm struggling so bad. I'm terrified I have ALS. I have many of your symptoms. I workout almost every day and I'm starting to notice my left side feels weaker. Like you it's hard to wear heels, feels like it is messing with my peroneal nerve. I especially notice it when I jump rope. It aggravates it.
First off I hope you are doing better and I can relate a lot to what you are going thru . I was diagnosed with PPMS in May of 2015 and it is a very hard struggle and I have seen myself go down hill since my diagnosis but more in the last year even with me getting the Ocrevus twice in the last year and will have my next infusion at the end of August I can't tell if it is really doing anything but it probably is. I believe if it wasn't for this treatment I would be worse off.:)
U have MS. I told my doctor something at right. He says I know, so I was sooo tired back pain was crazy, pins and needles gait gone, memory really freaked me out. Spasms so bad had to go to emergency for relaxer meds. My neuro didn't know what was going on, so she admitted me in hospital run every test known to man. NOTHING. process of elimination. Doctor started me on dmd. I year later yes. Took 3 yrs. It's a lonely disease cause we look good. I have an amazing support system. 5 doctors said it's in your head. Good luck do the lumbar puncture. Tell them to put you to sleep while doing it. I didn't feel a thing. Keep us posted.
It took them ten years to dignois me. I don't just have m.s. but also a auto immune disease. Have u had a *Ana* test yet? To rule out things that mimic m.s.? I actually have both. And some diseases can look like m.s. or u can have more than one thing going on. Also they kept not testing me in the correct spot for m.s. or giving me contrast.at the beginning when I was just a kid still... Anyhow. Good luck I hope they figure it out with u. But I'm m a patient t that had multiple attacks with leasions on both my spine and brain and possitive in my fluid. And I still had to wait a few more years for a correct dignosis. Just don't give up ok? N my very first symptom was the blacking out thing like u described. God bless .....
I am currently going through a lot of the same symptoms :/ also had original doc that thought I was faking it. Now on to new nuerologist and hoping to get an answer 31 years old mom of 5 and I now use a walker because of my gait and falls and balance issues
Jessica Arnold so sorry you’re going through that :(. Check out the Beighton score and Ehlers Danlos Syndrome hypermobility type. This might not be your cause but perhaps it may help. The symptoms looked an awful lot like MS but the cause was collagen disorder. I didn’t think it was until I did the Beighton score. I had been aggressively stretching for a year, more than I ever had before, for the “MS” symptoms and was surprised how much I could bend. My muscles had been knitted up my whole life until age 37. I never knew that they were tight because of loose ligaments. Good luck!
I saw my GP for like 8 years prior to symptoms. He knew me well. I complained with symptoms like fatigue, pins and needles, blurry visions, spasms, balance, and pain for 2 years and he did not take me serious. He seemed to think I was after pain meds. I switched Drs and didn't report any of my symptoms for fear of the same reaction. But then I had some visual disturbances and I told my doc and he ordered a CT and then a LP. 2 attempts were dry so he ordered a MRI and found multiple lesions and referred me to a Neuro. I'm now awaiting test results. I'm 40 now and going back I realize my first symptoms were actually in 2008 when my leg went numb for 3 days. I didn't think anything of it because it happened when a family membered drowned and died and I thought it was just stress. My vitamin d is chronically deficient. Has been a long time. I'm anxious for my results but I feel like I know what they are going to be already.
One of the big problems with MS and some other neurological disorders, is the diagnostic tools that doctors use to measure health, can be absolutely maddening. You are left many times as the healthiest truly sick person you know.🤔
Martin Jensen they found lesions in both hemispheres in the periventricular and juxtacortical regions on a later MRI. But of course, I'm sure you know, having read the medical literature yourself, that symptoms do not correspond to lesion load. I'm sure you are also aware that the MS Society states that getting a diagnosis can take months to years. Lastly, I'm sure you also know that, per the McDonald criteria, brain lesions alone are not sufficient for a diagnosis of PPMS; nor do they need to have spine lesions - an LP positive for bands is sufficient, along with a year of progressive neurological deterioration. Thank your for your unsubstantiated opinion.
