Thanks SO much for the blogs. I'm a 50 yo female and have just been diagnosed. I'm still a bit numb as I have always been as active as yourself with no family history of MS. It SUCKS, but I have to go onward and upward. This new drug is exciting. I'm not telling ANYONE (hubby was there at diagnoses) as I don't want pity. If anyone asks I will admit it, but am not volunteering this news. Thanks for all you have done to help with the understanding of PPMS.
I'm 57 and that's the way my MS progressed. I worked out a lot about 7 or 8 years ago. I was an obsessed hiker (at least 50 miles a week) and worked out in the gym 3 days a week. I first notice balance problems then. I sort of blew it off as just old age. Thought I just need to do more balance training in the gym. Then about 5 years ago, as things got worse, I thought, "O.K. this is something more serious".
Hi Sherina. I also have PPMS and have gone through many of the same experiences as you have. My ms was progressing slowly until a few years ago when the pace picked up. My first symptoms started in 1997, I was diagnosed with ms in 2004, but not told it was PPMS until 2016. My EDSS is 4.5. I've seen 5 Neuros since 2004, two,were top specialists on the east coast. I've been on Copaxone and Gilenya, but neither helped. I was diligent like you. I questioned and challenged and learned a lot, but to no avail. There are only two drugs that I have heard of that help PPMS. They are Rituxan or the new Ocrevus, but the best they do is slow progression by 25%. The only other option is HSCT, which I will be doing in two weeks. At first HSCT seemed crazy to me. Neuros will say it doesn't work or it's dangerous. Significant research says otherwise. There are hundreds of people who say otherwise. I've contacted a bunch. Stats say it stops progression in 75% of cases. I have read no regrets. Don't take my word. Do the research yourself. Chances are it will keep you out of a wheelchair. I'll post here again when I get back.
Going through the PPMS diagnosis due to the lumber puncture results. Ugh not good. Already have RRMS diagnosis since April 2019 but have had lesions in the brain since 2002. About 6 years ago things started declining. In December 2017 my leg started giving out on me. I have spine issues with stenosis DDD and arthritis. Fast forward April spine lesions found and about two weeks ago the LP with 10 o bands CSF and zero in serum. Index and synthesis of IGG very elevated. Just waiting for the official diagnosis. Declining very quickly.
WOW..Such a intelligent women..I was diagnosed with Accute disseminated encephalomyelitis (ADEM) in april 2019. First the neuro said it was probably MS. One day later after CT scans MRI and spinal tap it was concluded to be ADEM. Now 2 months later on my follow up the docs scheduled another MRI with and without contrast to test for possible MS... I thought they already figured this out...Thank you for the informative video
Thank you for your videos. I am a nurse going through the same thing as you and it's so frustrating. The back and forth with doctors is like nothing I've ever seen.... I have a great care team that I am personal with and they are all stumped. I haven't gave my spine checked for lesions but my brain mri had black hole unspecified lesions with high crp and anemia that comes and goes but I had a hysterectomy soo not cycle related and very low vit d not changed with mega doses. Seizures, moving neuropathy, and spine issues like disc hernias and degenerative. I think I will ask for an MRI with contrast. Thank you for your video!!! Please make more
John S look into EDS, a collagen defect that can cause orthopedic and multi system issues. I will post an update soon. It's the medical zebra, very underdiagnosed but a genetic test is done if you meet the Beighton criteria and have other matching symptoms.
Hi Sherina - I hope you are doing ok. Do you notice that since your symptoms started you've felt more tired/fatigue? I notice elsewhere that you said you don't, at this point, have heat sensitivity.
I was dx in 2015 . No lesions were found in my spinal . There are lesions in my brain. My doctor said you dont have to necessarily have to have them in your spinal
Teresa Nigro Do some research on the Cowden Protocol. In a medical study, Lyme bacteria was found in 100% of MS patients. Dr. Lee Cowden has TH-cam videos. I hope this helps. Your MS is a symptom of Lyme and is not a disease within itself.
Do some research on the Cowden Protocol. In a medical study, Lyme bacteria was found in 100% of MS patients' brains. Dr. Lee Cowden has TH-cam videos. I hope this helps. Your MS is a symptom of Lyme and is not a disease within itself. I'm doing Cowden now and went from bedwritten to doing pretty much whatever I want and am still improving.
I totally appreciate your sharing experience. I've had brain and spine MRI which show no lesions....and yet I have ataxia, muscle spasticity, bowel and urinary trouble, milky vision, etc, etc, etc...so frustrating...I'm to the point where I'm fairly certain it's not treatable though exercise, relaxation, and maintaining a comfortable body temperature are helpful. Since mine has progressed very slowly over a 21 year period and I'm still mobile (just not graceful) and because there is no hope for a reversal or treatment other than what I'm doing...When people ask, "Why are you walking like that?" - I'm just gonna go ahead and tell them it's PPMS. Because I feel like since I don't have a firm diagnosis -- I'm a fraud. I know this is really happening.
Kelly Klem look into Ehlers Danlos Syndrome. Look up the Beighton criteria to see if you have or have ever had, ie when younger, the ability to do those things. There’s also a diagnostic checklist from the EDS society website.
Hi Sherina, thank you so much for sharing! I've been going through this for nearly 7 years now. I'm a swimmer and i think that has masked a lot of the symptoms for a while. Still swim every day, just having some real problems walking. Starting to use a cane for longer walks recently and that has helped some. So sorry for what you are going through. Please keep up the great work! Peace to you ~ Jeff
I had my eye doc find atrophy and damage to the optic nerve which started my journey, then came the mris all done without contrast and the results did not rule out ms but at the same time there where lesions but small. Then came the evoked potential tests both visually and audio both showed delay or no effect which indicates ms or brain injury. Then came the spinal tap which showed positive for high g index and bands but the g index was high not grossly abnormal. My neurological exams have been done yearly since 1997 due to a back and spinal injury which made the ms diagnosis take even longer but in the end my neurologist gave me a ppms diagnosis and it was looked at and verified by another md/do. Now 3 year's later those docs are gone and I am left with a medical community that for the most part do not accept other drs words and want to restart all the bs all over. If it was rrms maybe but since I have ppms and there is no treatment for it anyway what r3ason do I have to go through all that again. I have lost all trust in the medical profession. Egotistical, prideful and cruel about labels them perfectly. Best of luck to you, and try to not let their ignorance jade you and get ya down like it has me.
Jeffrey Dixon even being in the healthcare field, I left several office visits and cried in the car! It was a very frustrating and depressing process. I am so sorry to hear that you have to go through it all over again! I will keep you in my prayers
Thanks for the update and I'm praying for the best..have you tackled you're diet/nutrition side..because now we know even the worst cases won't have to lead to a cane..so don't even consider that...I'm 6 months diagnosed.
J Randolph thanks for the prayers and you're absolutely right! The medical community is slow to come to the table so to speak but Terry Wahl's protocol make a lot of sense. Feed your body, feed your brain and feed those mitochondria! Wishing you healing in your journey also! Keep in touch...
Thanks SO much for the blogs. I'm a 50 yo female and have just been diagnosed. I'm still a bit numb as I have always been as active as yourself with no family history of MS. It SUCKS, but I have to go onward and upward. This new drug is exciting. I'm not telling ANYONE (hubby was there at diagnoses) as I don't want pity. If anyone asks I will admit it, but am not volunteering this news. Thanks for all you have done to help with the understanding of PPMS.
Thanks for explaining things so well.
I'm 57 and that's the way my MS progressed. I worked out a lot about 7 or 8 years ago. I was an obsessed hiker (at least 50 miles a week) and worked out in the gym 3 days a week. I first notice balance problems then. I sort of blew it off as just old age. Thought I just need to do more balance training in the gym. Then about 5 years ago, as things got worse, I thought, "O.K. this is something more serious".
Hi Sherina. I also have PPMS and have gone through many of the same experiences as you have. My ms was progressing slowly until a few years ago when the pace picked up. My first symptoms started in 1997, I was diagnosed with ms in 2004, but not told it was PPMS until 2016. My EDSS is 4.5. I've seen 5 Neuros since 2004, two,were top specialists on the east coast. I've been on Copaxone and Gilenya, but neither helped. I was diligent like you. I questioned and challenged and learned a lot, but to no avail. There are only two drugs that I have heard of that help PPMS. They are Rituxan or the new Ocrevus, but the best they do is slow progression by 25%. The only other option is HSCT, which I will be doing in two weeks. At first HSCT seemed crazy to me. Neuros will say it doesn't work or it's dangerous. Significant research says otherwise. There are hundreds of people who say otherwise. I've contacted a bunch. Stats say it stops progression in 75% of cases. I have read no regrets. Don't take my word. Do the research yourself. Chances are it will keep you out of a wheelchair. I'll post here again when I get back.
Sis how are you doing now? I haven't had an attack in over decade. I take no medication. Holler at me
What’s your secret?!
@@shel4697 secret?
To having no attacks with no meds
Going through the PPMS diagnosis due to the lumber puncture results. Ugh not good. Already have RRMS diagnosis since April 2019 but have had lesions in the brain since 2002. About 6 years ago things started declining.
In December 2017 my leg started giving out on me. I have spine issues with stenosis DDD and arthritis. Fast forward April spine lesions found and about two weeks ago the LP with 10 o bands CSF and zero in serum. Index and synthesis of IGG very elevated. Just waiting for the official diagnosis. Declining very quickly.
WOW..Such a intelligent women..I was diagnosed with Accute disseminated encephalomyelitis (ADEM) in april 2019. First the neuro said it was probably MS. One day later after CT scans MRI and spinal tap it was concluded to be ADEM. Now 2 months later on my follow up the docs scheduled another MRI with and without contrast to test for possible MS...
I thought they already figured this out...Thank you for the informative video
Thank you for your videos. I am a nurse going through the same thing as you and it's so frustrating. The back and forth with doctors is like nothing I've ever seen.... I have a great care team that I am personal with and they are all stumped. I haven't gave my spine checked for lesions but my brain mri had black hole unspecified lesions with high crp and anemia that comes and goes but I had a hysterectomy soo not cycle related and very low vit d not changed with mega doses. Seizures, moving neuropathy, and spine issues like disc hernias and degenerative. I think I will ask for an MRI with contrast. Thank you for your video!!! Please make more
John S look into EDS, a collagen defect that can cause orthopedic and multi system issues. I will post an update soon. It's the medical zebra, very underdiagnosed but a genetic test is done if you meet the Beighton criteria and have other matching symptoms.
PS my brain lesions are periventricular.
Hi Sherina - I hope you are doing ok. Do you notice that since your symptoms started you've felt more tired/fatigue? I notice elsewhere that you said you don't, at this point, have heat sensitivity.
I was dx in 2015 . No lesions were found in my spinal . There are lesions in my brain. My doctor said you dont have to necessarily have to have them in your spinal
Teresa Nigro Do some research on the Cowden Protocol. In a medical study, Lyme bacteria was found in 100% of MS patients. Dr. Lee Cowden has TH-cam videos. I hope this helps. Your MS is a symptom of Lyme and is not a disease within itself.
Do some research on the Cowden Protocol. In a medical study, Lyme bacteria was found in 100% of MS patients' brains. Dr. Lee Cowden has TH-cam videos. I hope this helps. Your MS is a symptom of Lyme and is not a disease within itself. I'm doing Cowden now and went from bedwritten to doing pretty much whatever I want and am still improving.
I totally appreciate your sharing experience. I've had brain and spine MRI which show no lesions....and yet I have ataxia, muscle spasticity, bowel and urinary trouble, milky vision, etc, etc, etc...so frustrating...I'm to the point where I'm fairly certain it's not treatable though exercise, relaxation, and maintaining a comfortable body temperature are helpful. Since mine has progressed very slowly over a 21 year period and I'm still mobile (just not graceful) and because there is no hope for a reversal or treatment other than what I'm doing...When people ask, "Why are you walking like that?" - I'm just gonna go ahead and tell them it's PPMS. Because I feel like since I don't have a firm diagnosis -- I'm a fraud. I know this is really happening.
Kelly Klem look into Ehlers Danlos Syndrome. Look up the Beighton criteria to see if you have or have ever had, ie when younger, the ability to do those things. There’s also a diagnostic checklist from the EDS society website.
@@sherinahagen4619 also sjigrens which is a mimic of MS
Hi Sherina, thank you so much for sharing! I've been going through this for nearly 7 years now. I'm a swimmer and i think that has masked a lot of the symptoms for a while. Still swim every day, just having some real problems walking. Starting to use a cane for longer walks recently and that has helped some.
So sorry for what you are going through. Please keep up the great work! Peace to you ~ Jeff
Have you gotten your diagnosis yet?
Auden0 yes Ehlers Danlos Syndrome Hypermobility Type
I assume an update is imminent.
ponynose lol, yes just did an update.
I had my eye doc find atrophy and damage to the optic nerve which started my journey, then came the mris all done without contrast and the results did not rule out ms but at the same time there where lesions but small. Then came the evoked potential tests both visually and audio both showed delay or no effect which indicates ms or brain injury. Then came the spinal tap which showed positive for high g index and bands but the g index was high not grossly abnormal. My neurological exams have been done yearly since 1997 due to a back and spinal injury which made the ms diagnosis take even longer but in the end my neurologist gave me a ppms diagnosis and it was looked at and verified by another md/do. Now 3 year's later those docs are gone and I am left with a medical community that for the most part do not accept other drs words and want to restart all the bs all over. If it was rrms maybe but since I have ppms and there is no treatment for it anyway what r3ason do I have to go through all that again. I have lost all trust in the medical profession. Egotistical, prideful and cruel about labels them perfectly. Best of luck to you, and try to not let their ignorance jade you and get ya down like it has me.
Jeffrey Dixon even being in the healthcare field, I left several office visits and cried in the car! It was a very frustrating and depressing process. I am so sorry to hear that you have to go through it all over again! I will keep you in my prayers
Thanks for doing this
I have so many questions please help me I’m in trouble I know it
DOEDOE sorry for the late reply. How are you doing?
Thanks for the update and I'm praying for the best..have you tackled you're diet/nutrition side..because now we know even the worst cases won't have to lead to a cane..so don't even consider that...I'm 6 months diagnosed.
J Randolph thanks for the prayers and you're absolutely right! The medical community is slow to come to the table so to speak but Terry Wahl's protocol make a lot of sense. Feed your body, feed your brain and feed those mitochondria! Wishing you healing in your journey also! Keep in touch...