I recently saw a new neurologist when I relapsed. He did a cursory examination that took two or three minutes and told me my EDSS was 4.5. Is it possible to do an EDSS in three minutes?
I have NEVER had my walking observed by any neurologist in the past 30 years. They do a finger/nose test, observe me looking from left to right, test my hand strength & plantar reaction. I can't walk more than 800m. I tell them that. They pluck an EDSS out of the air. Some years it's 2.6 or 3, others it's 4.5. Depending on who I see. They never ask about bladder and bowel function. I think you are the Carlsberg of neurologists. If only every neurologist were as good!!!
That is fascinating information!!! Now that I think about, in the 17 years I’ve had MS, my EDSS score has never been told to me or even discussed. Personally, I think it’s pretty worthless any way.
Sep 15, 2023·edited Sep 15, 2023Liked by Gavin Giovannoni
My neurologist bases his EDSS score from my annual mri. I have remained at 3 since DX 10 years ago, despite having new symptoms. But convinced no new lesions means I can’t be worse.
Last had an EDSS check when I was diagnosed in July 2009. Haven’t seen my consultant in years. I have been on Tysabri now for over a decade with high JC+ and haven’t seen a doctor or consultant in years! When I asked at my monthly infusions if I could see the consultant I was told ‘oh no love, we don’t do that anymore’!! Have recently moved and changed GPSs and on my new health check she was horrified that I no longer get to see a doctor considering my high PML risk.
I was diagnosed with PPMS in 2017 and I don’t think I’ve ever had an EDSS score done except when I took part in a research project, and even then I wasn’t told the results. Before he decided on very early retirement my consultant had over 1400 patients on his own! I did see him annually but since he retired in December 2020, I haven’t seen anyone. I’d be happy to try any sort of tech diagnosis - it must be better than nothing!
When I was first on the beta interferon risk sharing scheme I had to do a timed walk - kind of watched by my MS nurse - it was only 100m and then the time was multiplied by 5. My neuro examine involved reflexes, strength in my legs and arms and balance.
I am now on Tysabri and have not done a timed walk for 15 yrs. My neuro works out my score by asking me questions. My annual consultation usually just involves asking how I am doing. During the pandemic it was just a five minute telephone call. I would prefer an examination in all honesty.
Excellent examination by my GP who thought I'd had a stroke having determined my facial palsy was central rather than peripheral nervous system. Fair neurological examination and history by trainee in medical ward under the supervision by Stroke Consultant. Only measurement of cognitive function was about 50% of the mini mental state performed. Honestly I wouldn't mind if a trainee referred to notes or cribs sheet rather than trying to remember what to do! After MRI scan LP and several weeks I saw a general neurologist who took detailed history but did NOT examine me. She referred me to the MS services. Several months later a MS neurologist did cursory examination vibration sense and reflexes?, reasonable history no measure of cognitive function despite my complaint of struggling. No measure of walking etc that would inform EDDS. (I reported having no trouble walking) 6 months later MS Neurologist further history no examination of or structured questioning re functioning or assessment of cognitive functioning. Now more than 2 years on, on no treatment with no discussion about the reasoning behind this decision. About to go to my yearly review. MS consultant said that we could do it over the phone. I said that I would prefer to be seen face to face.
Strong feeling from that the services are under resourced and taking shortcuts.
Joan- yes. No testing whatsoever regarding cognitive functioning. I recently told my neurologist that brain function is my worst fear. I know what’s different and difficult now. 🌷
Yes. My neuro here in the States does a yearly exam, which lasts about 30 minutes (plus another 15 minutes of discussion), even though I was DXed 43 years ago. I’m very fortunate to have had her as my doctor for over 25 of those years, as I doubt most PwMS receive this level of care.
I don't have neuro exam anymore, was on tysabri, now on ocrevus, and I was told no point in doing annual scan anymore, which is odd because at another centre they do scan and basic neuro exam once a year. The care is so different depending on your location,
I have only every had one EDSS since I was initially put on DMTs in 2019. Noting since. With Covid I don't get to see a neurologist in person.
With regards to "Link the automated quantitative neurological examination to investigations, for example, MRI brain imaging, blood tests, CSF results, electrophysiological tests, etc. and feed this into an AI algorithm with deep learning, and you can see a future where neurologists will be outperformed as diagnosticians. This is not so far away. "
I am ready for this, I would prefer to have the data automated and analysed and spend time talking through my options with my consultant.
I would also like to see my medical data used not only for me but for others to help gather statistics and inform direction of treatments. No one likes getting a Lumber but its disappointing to think that after going thorough this, the information isn't used as best it could be.
Over the last 30 years, a neurologist has never conducted these tests with me. I have done walking tests for physiotherapists. After a big attack in 2014, their conclusion was I certainly be in a wheelchair in 6 months and, possibly, in 2 months. Nine years later I still walk unassisted. One of the physios was emphatic that I also had Parkinsons because she could see some clonus. She was obviously wrong but would never be corrected.
A year ago, my toes started curling so I decided to get some botox in my flexor digitorum longus and the flexor digitorum brevis. The spasticity experts were put out that I was calling the shots but agreed to do it. My walking speed increase 50% in eight weeks, so they congratulated themselves. Then they insisted on applying botox to my medial hamstrings. They may as well have blown my leg off with a shotgun as I was then reduced to a two step hobble. When I recovered from that they then insisted on botoxing my gastronemius. All I ever wanted them to do was stop my toes curling but they knew better. Eventually, they concluded the botox wasn't working and dismissed me. No plan B or even an attempt to wish me good luck.
Even I could tell that my problem related to the tibial nerve so my popleteus muscle was not rotating the tibia, the gastocnemius, the soleus, the flexor digitorum longus and the hallicus longus were all tight. The consequence of that was I couldn't dorsiflex and I hitched my hip to compensate. This meant I had a left lateral pelvic tilt and the right side of my trunk was compressed to deal with that. That is painful but it's due to posture, not MS.
My neurologist said "oh, there's been some deterioration". He based that on my comments. When I said I wanted to see someone else who could botox the flexor digitorum groups, he didn't know of anyone other than the people I've seen.
I couldn't care less about an EDSS number. I would rather have a conversation with someone who really understood the mechanics of my leg.
Sep 15, 2023·edited Dec 27, 2023Liked by Gavin Giovannoni
I have never had any of these tests. My G.P. did ask me to press his fingers and my nose and that really was it. My Neuro has done nothing and has now retired. I do not get to see a Neuro for 2 years now. God bless the NHS!
I am always the one to do a full verbal update going through the 5 for 5: No Smoking, Exercise, Diet, Meditation, and no DMTs. Also, I always mention the 'Up theres': Mood, Memory and Cognition, and the 'Down theres': Bowel, Bladder and Bedroom! Dr Aaron Boster is fantastic!
I have never had a neurological assessment and I was diagnosed in 2012, but my EDSS score always appears at the top of the post appointment letters. It was the same number as I got using the calculator though, 4. Been on Fingolimod since 2016.
Ive certainly never had a full EDSS assessment done and when I asked what my EDSS score was a number seemed to be conjured up in seconds. Also a full neurological exam doent get done annually. Cant remember ever having one so it must have been a good while ago eg years, if it did happen. An automated assessment seems to be a great option as it would be better than nothing , which is the situation at present!
When my son was admitted with his first presentation he was having hourly Neuro obs for the first two days/nights. These achieved zero except depriving him of much needed sleep. It was utterly pointless and I tried to argue the point that it wasn’t going to pick up anything but was told it had to be done. More recently we travelled 200 miles to see a Neuro specialist and he didn’t so much as lay a finger on the patient. Declared EDS from a very basic history alone and this was for HSCT discussion so pretty critical I’d have thought to know the full facts.
I have NEVER had my walking observed by any neurologist in the past 30 years. They do a finger/nose test, observe me looking from left to right, test my hand strength & plantar reaction. I can't walk more than 800m. I tell them that. They pluck an EDSS out of the air. Some years it's 2.6 or 3, others it's 4.5. Depending on who I see. They never ask about bladder and bowel function. I think you are the Carlsberg of neurologists. If only every neurologist were as good!!!
That is fascinating information!!! Now that I think about, in the 17 years I’ve had MS, my EDSS score has never been told to me or even discussed. Personally, I think it’s pretty worthless any way.
Ty.👋
My neurologist bases his EDSS score from my annual mri. I have remained at 3 since DX 10 years ago, despite having new symptoms. But convinced no new lesions means I can’t be worse.
It may not surprise you that you can't assess your EDSS score on MRI.
Indeed.
Last had an EDSS check when I was diagnosed in July 2009. Haven’t seen my consultant in years. I have been on Tysabri now for over a decade with high JC+ and haven’t seen a doctor or consultant in years! When I asked at my monthly infusions if I could see the consultant I was told ‘oh no love, we don’t do that anymore’!! Have recently moved and changed GPSs and on my new health check she was horrified that I no longer get to see a doctor considering my high PML risk.
That’s really shocking and pretty indefensible if you developed PML
I was diagnosed with PPMS in 2017 and I don’t think I’ve ever had an EDSS score done except when I took part in a research project, and even then I wasn’t told the results. Before he decided on very early retirement my consultant had over 1400 patients on his own! I did see him annually but since he retired in December 2020, I haven’t seen anyone. I’d be happy to try any sort of tech diagnosis - it must be better than nothing!
When I was first on the beta interferon risk sharing scheme I had to do a timed walk - kind of watched by my MS nurse - it was only 100m and then the time was multiplied by 5. My neuro examine involved reflexes, strength in my legs and arms and balance.
I am now on Tysabri and have not done a timed walk for 15 yrs. My neuro works out my score by asking me questions. My annual consultation usually just involves asking how I am doing. During the pandemic it was just a five minute telephone call. I would prefer an examination in all honesty.
Excellent examination by my GP who thought I'd had a stroke having determined my facial palsy was central rather than peripheral nervous system. Fair neurological examination and history by trainee in medical ward under the supervision by Stroke Consultant. Only measurement of cognitive function was about 50% of the mini mental state performed. Honestly I wouldn't mind if a trainee referred to notes or cribs sheet rather than trying to remember what to do! After MRI scan LP and several weeks I saw a general neurologist who took detailed history but did NOT examine me. She referred me to the MS services. Several months later a MS neurologist did cursory examination vibration sense and reflexes?, reasonable history no measure of cognitive function despite my complaint of struggling. No measure of walking etc that would inform EDDS. (I reported having no trouble walking) 6 months later MS Neurologist further history no examination of or structured questioning re functioning or assessment of cognitive functioning. Now more than 2 years on, on no treatment with no discussion about the reasoning behind this decision. About to go to my yearly review. MS consultant said that we could do it over the phone. I said that I would prefer to be seen face to face.
Strong feeling from that the services are under resourced and taking shortcuts.
Joan- yes. No testing whatsoever regarding cognitive functioning. I recently told my neurologist that brain function is my worst fear. I know what’s different and difficult now. 🌷
Yes. My neuro here in the States does a yearly exam, which lasts about 30 minutes (plus another 15 minutes of discussion), even though I was DXed 43 years ago. I’m very fortunate to have had her as my doctor for over 25 of those years, as I doubt most PwMS receive this level of care.
I don't have neuro exam anymore, was on tysabri, now on ocrevus, and I was told no point in doing annual scan anymore, which is odd because at another centre they do scan and basic neuro exam once a year. The care is so different depending on your location,
I have only every had one EDSS since I was initially put on DMTs in 2019. Noting since. With Covid I don't get to see a neurologist in person.
With regards to "Link the automated quantitative neurological examination to investigations, for example, MRI brain imaging, blood tests, CSF results, electrophysiological tests, etc. and feed this into an AI algorithm with deep learning, and you can see a future where neurologists will be outperformed as diagnosticians. This is not so far away. "
I am ready for this, I would prefer to have the data automated and analysed and spend time talking through my options with my consultant.
I would also like to see my medical data used not only for me but for others to help gather statistics and inform direction of treatments. No one likes getting a Lumber but its disappointing to think that after going thorough this, the information isn't used as best it could be.
Bring on the future I say
Over the last 30 years, a neurologist has never conducted these tests with me. I have done walking tests for physiotherapists. After a big attack in 2014, their conclusion was I certainly be in a wheelchair in 6 months and, possibly, in 2 months. Nine years later I still walk unassisted. One of the physios was emphatic that I also had Parkinsons because she could see some clonus. She was obviously wrong but would never be corrected.
A year ago, my toes started curling so I decided to get some botox in my flexor digitorum longus and the flexor digitorum brevis. The spasticity experts were put out that I was calling the shots but agreed to do it. My walking speed increase 50% in eight weeks, so they congratulated themselves. Then they insisted on applying botox to my medial hamstrings. They may as well have blown my leg off with a shotgun as I was then reduced to a two step hobble. When I recovered from that they then insisted on botoxing my gastronemius. All I ever wanted them to do was stop my toes curling but they knew better. Eventually, they concluded the botox wasn't working and dismissed me. No plan B or even an attempt to wish me good luck.
Even I could tell that my problem related to the tibial nerve so my popleteus muscle was not rotating the tibia, the gastocnemius, the soleus, the flexor digitorum longus and the hallicus longus were all tight. The consequence of that was I couldn't dorsiflex and I hitched my hip to compensate. This meant I had a left lateral pelvic tilt and the right side of my trunk was compressed to deal with that. That is painful but it's due to posture, not MS.
My neurologist said "oh, there's been some deterioration". He based that on my comments. When I said I wanted to see someone else who could botox the flexor digitorum groups, he didn't know of anyone other than the people I've seen.
I couldn't care less about an EDSS number. I would rather have a conversation with someone who really understood the mechanics of my leg.
I have never had any of these tests. My G.P. did ask me to press his fingers and my nose and that really was it. My Neuro has done nothing and has now retired. I do not get to see a Neuro for 2 years now. God bless the NHS!
I am always the one to do a full verbal update going through the 5 for 5: No Smoking, Exercise, Diet, Meditation, and no DMTs. Also, I always mention the 'Up theres': Mood, Memory and Cognition, and the 'Down theres': Bowel, Bladder and Bedroom! Dr Aaron Boster is fantastic!
Like others I have never had a walking assessment. I only had the full(ish) examination when I was diagnosed.
I have never had a neurological assessment and I was diagnosed in 2012, but my EDSS score always appears at the top of the post appointment letters. It was the same number as I got using the calculator though, 4. Been on Fingolimod since 2016.
Ive certainly never had a full EDSS assessment done and when I asked what my EDSS score was a number seemed to be conjured up in seconds. Also a full neurological exam doent get done annually. Cant remember ever having one so it must have been a good while ago eg years, if it did happen. An automated assessment seems to be a great option as it would be better than nothing , which is the situation at present!
My neuro did thorough exam,rare today. But for walking he only did a 20 ft timed walk totally useless.
When my son was admitted with his first presentation he was having hourly Neuro obs for the first two days/nights. These achieved zero except depriving him of much needed sleep. It was utterly pointless and I tried to argue the point that it wasn’t going to pick up anything but was told it had to be done. More recently we travelled 200 miles to see a Neuro specialist and he didn’t so much as lay a finger on the patient. Declared EDS from a very basic history alone and this was for HSCT discussion so pretty critical I’d have thought to know the full facts.