Thank you for posting this. Last month, I had brain MRI and it showed a spot. This Wednesday I am getting a brain MRI with contrast. My left leg doesn't want to go straight anymore, falling down all the time, and incredibly tired. This video really calmed me down so thank you!
@Jessie Jay Nope. I did just have a heart ablation surgery at the Mayo Clinic last Tuesday. But I am clinging to life. My BP is still too high so I can't sleep. And of course now all of the stimulants are out of the question. My hair is falling out and am having headaches. It has been a tough time.
My dad found out his diagnosis when he went to the eye doctor. He had lesions on the back of his eye. That doctor referred him to the neuro THAT DAY. Its wild how this disease effects everyone so differently. I hope your well on your journey ❤ ❤
Thank you for this series... I have been diagnosed with fibromyalgia, but I am not convinced it is what I have been dealing with. I have had this inkling in my gut that it has been more for a few years now. This has given me enough knowledge that I feel I should really be pushing my doctor for more answers. Ps I love your shirt.
Please be careful with the fibromyalgia diagnosis. Not many years ago, most doctors considered fibromyalgia to relate to psychiatric and psychological problems and nothing else. For them fibromyalgia was interchangeable with burn-out or depression and in some circles, the term was even used by the medical professionals to discretely indicate to their colleagues that the patient in question in reality suffered from hypochondriasis!!! Now, however, medical specialists are forced to at least admit that fibromyalgia is a genuinely somatic condition because of pressure from patient groups and rising awareness about its existence on social media amongst other things. This however does not mean that medical professionals think very hard and very carefully before diagnosing someone with fibromyalgia. For illustration, consider my story: A doctor diagnosed me with fibromalagia about 5 years ago and I was really happy when he did so at the time. After 7 years of having suffered from unexplainable extreme fatigue, cognitive deficits and severe pain in my hands and feet and having been consistently told that my condition was akin to a mere burnout, or depression, I really felt then that someone had finally taken me and my illness serious and diagnosed me with a real somatic condition... This was despite the fact that the diagnosis entitled me to nothing but cognitive behavioural therapy, antidepressants and pregabalin. I even joined a support group involving about 13 men and women who had all been diagnosed with fibromyalgia... Alas, within months my condition started to deteriorate quite badly. My neuropathic pain got to the point that I was forced to use deadly dosages of opiates around the clock. The fatigue became so debilitating that I was using up to 100 mg dextroamphetamine daily and I still was asleep at least 20 hours a day. One horrible day I woke up and realised that I had suddenly lost hearing in my right ear and to date doctors have been unable to identify the cause of my sudden deafness. Another day I woke up and began coughing up blood. Apparently I had developed dual lung embolism at night and I was couching up chucks of my right lung which had been decimated by the blood-clots. Weeks later, I started to suffer from serious gastrointestinal disturbances as well as bladder retention. Over the months and years that passed, I developed optic neuritis, fatty liver, gastric dumping, nephrotic syndrome, tachycardia, inability to regulate body temperature, over-sensitivity to warm and cold weather, inverse sleep, orthostatic hypotension, tics, loss of balance, etc. At this point, the extent and the severity of my symptoms was such that only a crazy person could claim that they all stemmed from a condition known as fibromyalgia. But that is exactly what my original neurologist asserted when I went back to see him. His advice was to "accept the findings of a medical professional and just get on with my life", that "I should not waste more time and public resources to seek a second opinion", etc. 1 1/2 years and a dozen neurologists in 3 different EU countries later, I underwent an intraepidermal nerve fiber density study. The results of the biopsy showed that I suffer from a severe form of a neurological disease called "small fiber neuropathy". This diagnosis explained for the first time the severe neuropathic pain in my extremities as well as the whole range of progressive autonomic symptoms which I had been displaying all these years... But even this disease could not explain the the severe cognitive and psychiatric problems which I have been experiencing since the onset of my troubles. My current neurologist is convinced that next to the very rare "small fiber neuropathy" I may also suffer from a de-myelinating disease affecting my spine or brain (in all likelyhood multiple sclerosis). We are investigating this real possibility at this very moment. Strangely enough, I now know 5 other individuals from my fibromyalgia support group who like me have recently been diagnosed with something new! Two have multiple sclerosis, one has CIDP, one has familial amyloidosis which has resulted in peripheral painful and motor neuropathy and the last one has been diagnosed with Fabri disease!!!
Hi Paul thank you for doing these videos even though I understand how tiring it would be to do it at first I'm currently under investigation for ms and been a long one watching your videos really help me understand the steps and what to expect and when diagnosed will help with how to deal with it thank you so much for making these videos
Hey Paul, once again great video.. its always very interesting to hear about other peoples journeys with MS, how the symptoms all started, how you were diagnosed, where you are now with things etc. Looking forward to the next installment. Regards - Neil.
Thanks again for watching. It's great to get feedback. I'm enjoying making them too. One thing that we need to do is to stay active. I'm going to the gym daily at the moment too. I get tired but that not altogether bad. How are things with you?
Hi Paul - I'm not so bad thanks. It is good to stay active and keep your strength up definitely. Sadly my days in the gym are over, I'm in transition to Secondary Progressive. My mobility was hit hard during an MS attack in 2012, just walking is a struggle now. I don't dwell on it though, and remain positive. Like you, really enjoy doing the videos, and it keeps me really busy as well. Keep at it, the subscribers will come. It's also important to write a decent description and include relevant tags, so that your videos can be found in the search engines. Cheers.
Hey Paul it's very informative and supportive . I wanted to know few things. MRI showed focal lesions that means ms was there long before it started to manifest. And in your case it progressed so fast.
Manu Zacharias Hi Manu, I recently learned from comments on this channel that Paul has passed away. I can only assume this is true as Paul hasn’t replied to anybody for a very long time. I don’t know any details though. I hope all is well with you.
I am 45 and have 30 lessons in my brain and about 20 in my spine. My symptoms started wen I was about 10. I was having end stage symptoms like swallowing issues, kept getting food in my lungs and kept getting lung infections, boul inconstants, was bed riden. They were talking feeding tube.i fired my doctors. Went alkaline to ware disease can not survive. And Ben doing the Terry walls protocol and am now back in action, almost ( SYMPTOM FREE) !!!!!!! Coral calseum. PS. I beat suriasis the same way. My name is Stu not sue, thank you!!!!!!
FINALLY!!! Another Wahls Warrior in the comments section! I wish more people knew that they do not need to rely strictly on neurologists & DMDs... food is more important than either. Doctors don't profit off food, so why would they prescribe it? I'd hope it's because doctors want people to get better, but I fear that is not the case. I'm 4+ years in & doing pretty dang well on the Wahls Protocol. Working 40 hour weeks in a cannabis farm with 75+ degree heat & sometimes over 60% humidity. I do have to work without a shirt, but other than that I'm doing what most people with MS wouldn't think was possible. I struggle some days, but mostly doing well.
Dear Paul, I've had the entire "palette" of MS symptoms that lasted for over 5 months in total, I was in a wheel chair for 3 weeks out of those 5 months due to my right leg's paresis. The brain MRI didn't show any MS changes. The spinal tap however shows oligloclonal bands present only in my csf and not in my blood. I'm in the fifth hospital in 6 months at the moment - rheumatological ward this time... They just confirmed that i suffer from auto-immunological disease but they still can't figure out which one. I've head so many potential diagnosis in the last months that my head is spinning (just to mention a couple of them: meningitis, MS boleriosis, neuralgy, fibromyalgia, epilepsy, reactive joint inflammation, osteoarthritis, lupus, devics syndrome and more). The strangest thing is that I actually feel much better at the moment. I'm not exactly the person I was half a year ago (I'm completely out of shape, I get tired easily, I need much more rest, my memory fails me sometimes, I find it very difficult to focus, I still have a lot of pain and stiffness in my low back and my legs often feel as if they were made of lead, numb and "disconnected from me", my vision is worse) but I'm so much better than I was in the worst moment of this disease. My question to you, if you could please find a moment to answer me, is: is it possible I got better and some of the most devastating symptoms I had for some time went away? I'm stuck in a limbo now as the neurologists say they don't confirm an MS diagnosis without any evidence for it in the MRI. My GP and 2 different internists said that with such spinal tap result I'll probably need to wait (literally) until the next flare for anything to show up in the MRI. My doctor here, in the institute of rheumatology, having gotten to know about all my symptoms (I don't have 70% of them at the moment!!!), having seen the documents from other hospitals, all the tests results etc says that there is a huge risk I have MS since I have an undefined auto-immunological disease and the oligloclonal bands plus I had many many symptoms. According to him I'm in a remission phase atm. Are there such phases in MS, Paul? Is it possible that I got so much better but at some point it's going to come back and "strike" again? Thank you for all your hard work and honesty and sending you my best wishes from Poland (a country with extremely poor MS diagnostics and terrible NHS :(....)
Hello Paul and thank you for your videos - very helpful - can you tell me how it is that the spinal tap result confirmed the MS please? What is it they look for in the fluid that confirms it? Do you know ?
How in the hell did you get your doctor to order so many MRI? I had to fight so hard just to get my doctor to order a brain mri because she said my neurological exam was normal. Was your brain mri with or without contrast? My doctor ordered it without contrast!. My main symptoms are headaches and anxiety please repson thank you.
It’s important to have your MRI with contrast. It helps illuminate the lesions, and in my case, helps to differentiate between what are active vs. old or healing lesions. Best of luck to you!
Well MRI is extremely expensive and if your exam is normal they are not likely to order one. Now say you hit your head and went to the ER that's another story. Just sayin
@@Traceyi1000 my dr ordered my MRI w/o contrast which I questioned. Why not order it with contrast if it will show more?? MRI showed several small lesions in areas that the radiologist said such findings might be associated with a demyelination condition. My dr referred me to a neurologist but I can’t be seen though until October 12th. 😮. My dizziness w/o spinning , very bad balance ,chronic fatigue and lower back pain that affects my sleep have been terrible for the past 10 months. I’m thinking I may have to go to the ER just to get seen quicker. I can’t wait until October.
Have you heard of Dr David Wheldon from London and his wife that has MS? If you have what are your thoughts? If you have not I will tell you if you would like to know.
Thank you for posting this. Last month, I had brain MRI and it showed a spot. This Wednesday I am getting a brain MRI with contrast. My left leg doesn't want to go straight anymore, falling down all the time, and incredibly tired. This video really calmed me down so thank you!
@Jessie Jay Nope. I did just have a heart ablation surgery at the Mayo Clinic last Tuesday. But I am clinging to life. My BP is still too high so I can't sleep. And of course now all of the stimulants are out of the question. My hair is falling out and am having headaches. It has been a tough time.
Thank you for these videos, you are really helping with my diagnostic journey x
so glad to hear your comments about the spinal tap, thats been really scaring me, thankyou
My dad found out his diagnosis when he went to the eye doctor. He had lesions on the back of his eye. That doctor referred him to the neuro THAT DAY.
Its wild how this disease effects everyone so differently. I hope your well on your journey ❤ ❤
Thank you for this series... I have been diagnosed with fibromyalgia, but I am not convinced it is what I have been dealing with. I have had this inkling in my gut that it has been more for a few years now. This has given me enough knowledge that I feel I should really be pushing my doctor for more answers. Ps I love your shirt.
Please be careful with the fibromyalgia diagnosis. Not many years ago, most doctors considered fibromyalgia to relate to psychiatric and psychological problems and nothing else. For them fibromyalgia was interchangeable with burn-out or depression and in some circles, the term was even used by the medical professionals to discretely indicate to their colleagues that the patient in question in reality suffered from hypochondriasis!!! Now, however, medical specialists are forced to at least admit that fibromyalgia is a genuinely somatic condition because of pressure from patient groups and rising awareness about its existence on social media amongst other things. This however does not mean that medical professionals think very hard and very carefully before diagnosing someone with fibromyalgia.
For illustration, consider my story:
A doctor diagnosed me with fibromalagia about 5 years ago and I was really happy when he did so at the time. After 7 years of having suffered from unexplainable extreme fatigue, cognitive deficits and severe pain in my hands and feet and having been consistently told that my condition was akin to a mere burnout, or depression, I really felt then that someone had finally taken me and my illness serious and diagnosed me with a real somatic condition... This was despite the fact that the diagnosis entitled me to nothing but cognitive behavioural therapy, antidepressants and pregabalin. I even joined a support group involving about 13 men and women who had all been diagnosed with fibromyalgia...
Alas, within months my condition started to deteriorate quite badly. My neuropathic pain got to the point that I was forced to use deadly dosages of opiates around the clock. The fatigue became so debilitating that I was using up to 100 mg dextroamphetamine daily and I still was asleep at least 20 hours a day. One horrible day I woke up and realised that I had suddenly lost hearing in my right ear and to date doctors have been unable to identify the cause of my sudden deafness. Another day I woke up and began coughing up blood. Apparently I had developed dual lung embolism at night and I was couching up chucks of my right lung which had been decimated by the blood-clots. Weeks later, I started to suffer from serious gastrointestinal disturbances as well as bladder retention. Over the months and years that passed, I developed optic neuritis, fatty liver, gastric dumping, nephrotic syndrome, tachycardia, inability to regulate body temperature, over-sensitivity to warm and cold weather, inverse sleep, orthostatic hypotension, tics, loss of balance, etc. At this point, the extent and the severity of my symptoms was such that only a crazy person could claim that they all stemmed from a condition known as fibromyalgia. But that is exactly what my original neurologist asserted when I went back to see him. His advice was to "accept the findings of a medical professional and just get on with my life", that "I should not waste more time and public resources to seek a second opinion", etc.
1 1/2 years and a dozen neurologists in 3 different EU countries later, I underwent an intraepidermal nerve fiber density study. The results of the biopsy showed that I suffer from a severe form of a neurological disease called "small fiber neuropathy". This diagnosis explained for the first time the severe neuropathic pain in my extremities as well as the whole range of progressive autonomic symptoms which I had been displaying all these years... But even this disease could not explain the the severe cognitive and psychiatric problems which I have been experiencing since the onset of my troubles. My current neurologist is convinced that next to the very rare "small fiber neuropathy" I may also suffer from a de-myelinating disease affecting my spine or brain (in all likelyhood multiple sclerosis). We are investigating this real possibility at this very moment.
Strangely enough, I now know 5 other individuals from my fibromyalgia support group who like me have recently been diagnosed with something new! Two have multiple sclerosis, one has CIDP, one has familial amyloidosis which has resulted in peripheral painful and motor neuropathy and the last one has been diagnosed with Fabri disease!!!
@@clifffff7630 I'm sorry for all you went through. Thank you for sharing your story. Fibromyalgia should definitely be taken more seriously.
Hi Paul thank you for doing these videos even though I understand how tiring it would be to do it at first I'm currently under investigation for ms and been a long one watching your videos really help me understand the steps and what to expect and when diagnosed will help with how to deal with it thank you so much for making these videos
Hey Paul, once again great video.. its always very interesting to hear about other peoples journeys with MS, how the symptoms all started, how you were diagnosed, where you are now with things etc. Looking forward to the next installment.
Regards - Neil.
Thanks again for watching. It's great to get feedback. I'm enjoying making them too. One thing that we need to do is to stay active. I'm going to the gym daily at the moment too. I get tired but that not altogether bad.
How are things with you?
Hi Paul - I'm not so bad thanks. It is good to stay active and keep your strength up definitely. Sadly my days in the gym are over, I'm in transition to Secondary Progressive. My mobility was hit hard during an MS attack in 2012, just walking is a struggle now. I don't dwell on it though, and remain positive.
Like you, really enjoy doing the videos, and it keeps me really busy as well. Keep at it, the subscribers will come. It's also important to write a decent description and include relevant tags, so that your videos can be found in the search engines. Cheers.
Hey Paul it's very informative and supportive . I wanted to know few things. MRI showed focal lesions that means ms was there long before it started to manifest. And in your case it progressed so fast.
Manu Zacharias Hi Manu, I recently learned from comments on this channel that Paul has passed away. I can only assume this is true as Paul hasn’t replied to anybody for a very long time. I don’t know any details though. I hope all is well with you.
Had a CT mylegram for my lumbar stenosis so same thing.
It didn't hurt at all.
No side effects.
This was about a year before I was diagnosed with MS
Your videos are very informative and very encouraging... Thank u.
God bless u
I am 45 and have 30 lessons in my brain and about 20 in my spine. My symptoms started wen I was about 10. I was having end stage symptoms like swallowing issues, kept getting food in my lungs and kept getting lung infections, boul inconstants, was bed riden. They were talking feeding tube.i fired my doctors. Went alkaline to ware disease can not survive. And Ben doing the Terry walls protocol and am now back in action, almost ( SYMPTOM FREE) !!!!!!! Coral calseum. PS. I beat suriasis the same way. My name is Stu not sue, thank you!!!!!!
How are u now and is there any way I could get in contact with you?
FINALLY!!! Another Wahls Warrior in the comments section! I wish more people knew that they do not need to rely strictly on neurologists & DMDs... food is more important than either. Doctors don't profit off food, so why would they prescribe it? I'd hope it's because doctors want people to get better, but I fear that is not the case. I'm 4+ years in & doing pretty dang well on the Wahls Protocol. Working 40 hour weeks in a cannabis farm with 75+ degree heat & sometimes over 60% humidity. I do have to work without a shirt, but other than that I'm doing what most people with MS wouldn't think was possible. I struggle some days, but mostly doing well.
Very, very similar to my experience. I think a spinal tap is next. Thanks for sharing!
Do you also get arm weakness and heaviness in legs , dizziness along with the other symptoms
Dear Paul, I've had the entire "palette" of MS symptoms that lasted for over 5 months in total, I was in a wheel chair for 3 weeks out of those 5 months due to my right leg's paresis. The brain MRI didn't show any MS changes. The spinal tap however shows oligloclonal bands present only in my csf and not in my blood. I'm in the fifth hospital in 6 months at the moment - rheumatological ward this time... They just confirmed that i suffer from auto-immunological disease but they still can't figure out which one. I've head so many potential diagnosis in the last months that my head is spinning (just to mention a couple of them: meningitis, MS boleriosis, neuralgy, fibromyalgia, epilepsy, reactive joint inflammation, osteoarthritis, lupus, devics syndrome and more). The strangest thing is that I actually feel much better at the moment. I'm not exactly the person I was half a year ago (I'm completely out of shape, I get tired easily, I need much more rest, my memory fails me sometimes, I find it very difficult to focus, I still have a lot of pain and stiffness in my low back and my legs often feel as if they were made of lead, numb and "disconnected from me", my vision is worse) but I'm so much better than I was in the worst moment of this disease.
My question to you, if you could please find a moment to answer me, is: is it possible I got better and some of the most devastating symptoms I had for some time went away?
I'm stuck in a limbo now as the neurologists say they don't confirm an MS diagnosis without any evidence for it in the MRI. My GP and 2 different internists said that with such spinal tap result I'll probably need to wait (literally) until the next flare for anything to show up in the MRI.
My doctor here, in the institute of rheumatology, having gotten to know about all my symptoms (I don't have 70% of them at the moment!!!), having seen the documents from other hospitals, all the tests results etc says that there is a huge risk I have MS since I have an undefined auto-immunological disease and the oligloclonal bands plus I had many many symptoms. According to him I'm in a remission phase atm.
Are there such phases in MS, Paul? Is it possible that I got so much better but at some point it's going to come back and "strike" again?
Thank you for all your hard work and honesty and sending you my best wishes from Poland (a country with extremely poor MS diagnostics and terrible NHS :(....)
afectados Latam I just read your comment, I hope you are closer to a diagnosis & are ok , good luck from another person suffering ✌️
afectados Latam hey , how are you feeling now? What about your diagnosis?
You should always lay flat for at least 8 hrs after a myelogram to avoid a serious headache.
Why didn't they do an MRI from head to tail the first time?
Hello Paul and thank you for your videos - very helpful - can you tell me how it is that the spinal tap result confirmed the MS please? What is it they look for in the fluid that confirms it? Do you know ?
Peripheral neuropathy?
It would be appropriate to do a full brain and full spine mri.
Where have you gone :(
Thank you!
How in the hell did you get your doctor to order so many MRI? I had to fight so hard just to get my doctor to order a brain mri because she said my neurological exam was normal. Was your brain mri with or without contrast? My doctor ordered it without contrast!. My main symptoms are headaches and anxiety please repson thank you.
I suspect his GP had seen MS before so understood there was a possibility of MS/ serious neurological conditions.
It’s important to have your MRI with contrast. It helps illuminate the lesions, and in my case, helps to differentiate between what are active vs. old or healing lesions. Best of luck to you!
Well MRI is extremely expensive and if your exam is normal they are not likely to order one.
Now say you hit your head and went to the ER that's another story.
Just sayin
@@Traceyi1000 my dr ordered my MRI w/o contrast which I questioned. Why not order it with contrast if it will show more??
MRI showed several small lesions in areas that the radiologist said such findings might be associated with a demyelination condition.
My dr referred me to a neurologist but I can’t be seen though until October 12th. 😮.
My dizziness w/o spinning , very bad balance ,chronic fatigue and lower back pain that affects my sleep have been terrible for the past 10 months.
I’m thinking I may have to go to the ER just to get seen quicker. I can’t wait until October.
Have you heard of Dr David Wheldon from London and his wife that has MS?
If you have what are your thoughts?
If you have not I will tell you if you would like to know.
So with limited insurance and continuous MRI aren't paid for what is the one test you would recommend getting done with limited coverage. Thank you
An MRI on the brain, with contrast. That will usually tell whether you have MS or not.
How are you doing now?
I have all the same symptoms but my MRI of the brain only showed natural aging. I don't know where to go from there.
Mabye you have fibromyalgia i have it and has similar symptoms
How r u 👍💗🥊
fellow brummy