I have Lupus, Fibromyalgia & MS… And now they found out that I have stage 4 bone cancer and I don’t have long, It’s miserable, I never know which one is attacking. It took years & years for the Doctor to take me serious, half heartedly sending me for tests, so I started researching the symptoms I was having & telling the Doctor what I found myself, (primary Doctor actually chuckled at me, not in a nice way… but in a mocking way!), 2nd opinion isn’t much better at all. Advocate strongly for yourself folks, if their not familiar with something they will blow you off… & your the one that’s still miserable.
I hope you found a good primary doctor to replace the one you refer to. You have more than enough issues to deal with than heaping on a doctor who could make lite of your efforts to gain knowledge into this horrible life sucking disease.
I have had many Drs dismiss my symptoms also , And I wish they knew more about these auto immune dis eases . Im sorry you had to go through this as well . I have had to fight old school thinking from them .
I prefer to play and dance over “exercise”,wander the neighborhood to be nosey and to socialize over “go for a walk”, and eat outside to get some sunshine- take my shoes off for some earthing When pesky symptoms come over uninvited I play some music, drink lots of water, and pet the dogs Symptoms, haircut , moisturizing, nail trimming etc It’s all just part of who I am
I just love your calming personality. I had no idea that there was a name for the stabbing pain in the face. Have had it for years, doesn't last long but oh my goodness, stops me in my tracks. I don't have a diagnosis and am seeing lots of different docs at the moment. One question, do you mind sharing how old you were when diagnosed? I'm in my late 40s and thought MS was more likely to be found in younger people. Thanks so much for all your information. ❤️
Oh glad you can tell the doctors what you are experiencing, it may help them diagnosis it. I was 51 when diagnosed, nut had my first real discernible symptoms 11 years prior and honestly had some odd symptoms on and off for years.
I don't need to be told my swollen cheek is not real, or that swell is not a symptom Ms. I all ready had my former Dr. That my symptoms are in my head. She was almost right the spot is in my brain stem proven by mri with contrast my son noticed it the day I came back from a 6 hr er test and MRI, on was. Full body, second was brain stem MRI with contrast. I didn't notice the swelling because touch ing under my eye my nose my mid cheek and under my jaw bone. Also I no longer look at myself in a mirror I DID IT gradtuate med school , Unplanned pregnancy stopped me a had to go back to work two care for my children.i don't know what your training is but i did hands in care on several MS patients in hospital, also as a home health and hospice RN and LPN and as the charge nurse in long term care, end of life care. One thing I was told by a 20yr more experced. RN is that most of the patients we care for know more about their diseases than we do. And all the symptoms varies.. my vision comes and goes and is worse on the evening.
Not diagnosed (yet), but I had a bought of trigeminal neuralgia that lasted for almost a week even taking anticonvulsant medication took that long to calm the nerve. It was brutal!
Oh goodness! Trigeminal neuralgia is reported as being one of the most painful symptoms. I am sorry you experienced that. I hope it doesn’t return. Thanks for watching.
I've developed occipital neuralgia like pain (neurologist doesn't seem to care enough to diagnose it) due to neck/back spasms. Omg it's the worst pain I've ever felt, way worse than a migraine. It's the reason I had to leave work just after 2 hours of working. I'm on gabapentin now and the spasms seemed to have calmed down after that flare (not diagnosed with MS) stopped. I'd rather have spasms and bad nights of sleep than that pain.
I have TN attacks daily for about 28 years now it’s the worst pain ever and unfortunately I have it on both sides so therefore they won’t do any operation on me . Medication made me feel worse. Thank goodness I try to be positive but its no wonder it’s called suicide pain . Xxx
@@EvenSoItIsWell I have therapy every week for all these years . I have learnt a lot of how this horrible ailment takes control of ones life. I just live my life and make the best of it , so glad nobody can see it so therefore I don’t tell people so don’t give it much attention . Ones mind set is also powerful otherwise it might ruin everything . I also pray for help 🙏👍
@@margaretpeelen3968 such great ways to cope with MS. I do therapy as well. Living the best we can and having a good mindset are so helpful. And prayer is always a great tool too! 🙂
I appreciate your kindness and gentle approach to this very complicated disease... Multiple Sclerosis. I was diagnosed 15 years ago, and until recently was relatively symptom free. Your videos are a very positive addition in my life.
@@dnjmcdonald1506 Aw, thanks so much! I had my first discernible symptoms 15ish years ago but was not diagnosed until 2017. We are on this journey with MS together.
@@janakal2924 I have never experienced it myself so I can’t really shear much about it. I know that the intercostal muscles between our ribs are most affected which is why we feel that squeeze and tightness. MS can cause spasms in any of our muscles and stretching, exercise, and muscle relaxers can help with the MS hug.
Dizziness and vertigo can come from the nerves in the ear that stabilizes your place in space. There are horizontal, vertical and diagonal planes. Normally when they do testing on them, they check for the vertical plane. I have problems with the horizontal plane on one side and the diagonal plane on the other side. It is best to look for a hearing specialist that is willing to do testing for all three planes. My neurologist wouldn't believe me either, but the physician who finally tested all three planes understood that ms can cause nerve damage to the ears. Hope this helps.
