Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
Re: Myelitis or beginings of MS ?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Re: Myelitis or beginings of MS ?
by John__0__0, Jan 01, 1995 12:00AM
Posted By John on June 11, 1999 at 09:09:32
Sorry about posting this as an add-on to an earlier posting, but I had looked back through previous entries and I had noted that this had been done when there appeared to be some commonality between queries, but I would still be very grateful for any comments which you think are appropriate to query below. Many Thanks.
I have a condition which my GP termed 'myelitis' the symptoms of which started about 5 years ago.
At the time I thought I had minor slippage of a disc in my neck, as I had been dancing at wedding reception and remember one dance involved (this sounds quite silly now) whiplash type movements of the head. I slept that night in a friend's spare bed which was quite a bit softer than mine and woke up thinking I had odd kind of cramp/numbness in my legs (this did not disappear after along walk). After 3-4 months the mild cramp/ numbness was still there and was accompanied by tingling in the limbs (arms, hands and legs) when I bent my head forwards. On a visit to my GP for something else I mentioned this to him and he referred me to the local hospital. (In retrospect the only symptom prior to this was numbness in my little finger after having my head lent forwards during washing of the hair, which only ever had occurred a few times and was shortlived.)
I underwent a whole host of tests (blood (I don't know the exact details of what was tested for here), optical nerve tests, nerve conduction, MRI and finally lumbar puncture) over an extended period of time (four years) which failed to find anything to provide a definite diagnosis, the concluding remarks from the consultant were that this was unfortunate, but this sometimes happened. He also unreassuringly remarked that even if the cause could be identified, there was often nothing that could be done. However, later in the consultation he also said that he couldn't recommend any treatment without having identified the cause. He added that he considered that there could be about four possible causes, but he didn't want to speculate at this point and couldn't be drawn. His parting remarks were that if the symptoms got any worse, then I was to get back in touch and they would run through the tests again. At the time as the symptoms were relatively mild, and because one of his junior colleagues had suggested previously that the cause could be soft tissue pressing against the spinal cord, I was partly satisfied and thought well I can live with this, it doesn't sound that serious and it might go away.
However, over the last year or so the symptoms have become much worse (tingling and numb patches in groin, legs and arms without flexing the neck, (however, neck movement still causes sensations but often more intense) if I run (particularly down hill on the heels) then it seems to jar my spine and the tingling becomes highly intense (so I avoid running etc. now, which has had a major effect on my lifestyle), burning and pain in forearm down to the fleshy part of the RH palm (like RSI or neuropathy ?), odd pains around where the outer tendons from the thigh join the RH knee, and what I can best describe as long permanence sensation from the front upper tendon area of my RH foot , where it joins the leg, and so I returned to my GP who did a brief reflex examination and contacted the hospital's neurology department for a further appointment, which has been made for 75 weeks hence (unless something drastic happens in the meantime) ! and has been classed as 'routine'. My GP had changed due to retirement and she explained a bit more about the Myelin sheath and its function. At this point I wanted to find out about research into these type of conditions and if anything new was on the horizon (or in trials) which could slow down whatever deterioration process might taking place, and was delighted to find these and other similar pages. Being a research scientist I am always tend to seek out as much information and different views on a topic as possible, so thanks for maintaining the page, for my part it is much appreciated.
Having coming across this forum I thought I would post this history in the hope of obtaining information/some suggestions from a centre of excellence which specialises in this area. As I am keen to pursue any strategy which might halt or slow down the rate of progression of this condition. Whatever it is !
It seems to me that in the US you take a much more proactive line with these kind of conditions and have greater expertise than here in the UK, possibly due to size of population, etc.
I hope I can benefit from any knowledge which you can pass on, which help me with my future dealings with medical experts.
Thanks for your kind attention.
ps. I have come across dietary suggestions by Ashton Embry and 'nitric oxide reduction diet' published by F. Grasso. In lieu of anything better I am trying to apply these (Omega 3 & 6 oils, oral B12 etc.) with the anti-oxidants pyncogenol, green tea which are available 'over the counter'. Any views on these would also be appreciated.
If this was the early stages of MS would the use of ABC be indicated ?
In the UK it appears that prescription of these drugs is highly limited (due to cost perhaps ?)and totally inconsistent.
Sorry about posting this as an add-on to an earlier posting, but I had looked back through previous entries and I had noted that this had been done when there appeared to be some commonality between queries, but I would still be very grateful for any comments which you think are appropriate to query below. Many Thanks.
I have a condition which my GP termed 'myelitis' the symptoms of which started about 5 years ago.
At the time I thought I had minor slippage of a disc in my neck, as I had been dancing at wedding reception and remember one dance involved (this sounds quite silly now) whiplash type movements of the head. I slept that night in a friend's spare bed which was quite a bit softer than mine and woke up thinking I had odd kind of cramp/numbness in my legs (this did not disappear after along walk). After 3-4 months the mild cramp/ numbness was still there and was accompanied by tingling in the limbs (arms, hands and legs) when I bent my head forwards. On a visit to my GP for something else I mentioned this to him and he referred me to the local hospital. (In retrospect the only symptom prior to this was numbness in my little finger after having my head lent forwards during washing of the hair, which only ever had occurred a few times and was shortlived.)
I underwent a whole host of tests (blood (I don't know the exact details of what was tested for here), optical nerve tests, nerve conduction, MRI and finally lumbar puncture) over an extended period of time (four years) which failed to find anything to provide a definite diagnosis, the concluding remarks from the consultant were that this was unfortunate, but this sometimes happened. He also unreassuringly remarked that even if the cause could be identified, there was often nothing that could be done. However, later in the consultation he also said that he couldn't recommend any treatment without having identified the cause. He added that he considered that there could be about four possible causes, but he didn't want to speculate at this point and couldn't be drawn. His parting remarks were that if the symptoms got any worse, then I was to get back in touch and they would run through the tests again. At the time as the symptoms were relatively mild, and because one of his junior colleagues had suggested previously that the cause could be soft tissue pressing against the spinal cord, I was partly satisfied and thought well I can live with this, it doesn't sound that serious and it might go away.
However, over the last year or so the symptoms have become much worse (tingling and numb patches in groin, legs and arms without flexing the neck, (however, neck movement still causes sensations but often more intense) if I run (particularly down hill on the heels) then it seems to jar my spine and the tingling becomes highly intense (so I avoid running etc. now, which has had a major effect on my lifestyle), burning and pain in forearm down to the fleshy part of the RH palm (like RSI or neuropathy ?), odd pains around where the outer tendons from the thigh join the RH knee, and what I can best describe as long permanence sensation from the front upper tendon area of my RH foot , where it joins the leg, and so I returned to my GP who did a brief reflex examination and contacted the hospital's neurology department for a further appointment, which has been made for 75 weeks hence (unless something drastic happens in the meantime) ! and has been classed as 'routine'. My GP had changed due to retirement and she explained a bit more about the Myelin sheath and its function. At this point I wanted to find out about research into these type of conditions and if anything new was on the horizon (or in trials) which could slow down whatever deterioration process might taking place, and was delighted to find these and other similar pages. Being a research scientist I am always tend to seek out as much information and different views on a topic as possible, so thanks for maintaining the page, for my part it is much appreciated.
Having coming across this forum I thought I would post this history in the hope of obtaining information/some suggestions from a centre of excellence which specialises in this area. As I am keen to pursue any strategy which might halt or slow down the rate of progression of this condition. Whatever it is !
It seems to me that in the US you take a much more proactive line with these kind of conditions and have greater expertise than here in the UK, possibly due to size of population, etc.
I hope I can benefit from any knowledge which you can pass on, which help me with my future dealings with medical experts.
Thanks for your kind attention.
ps. I have come across dietary suggestions by Ashton Embry and 'nitric oxide reduction diet' published by F. Grasso. In lieu of anything better I am trying to apply these (Omega 3 & 6 oils, oral B12 etc.) with the anti-oxidants pyncogenol, green tea which are available 'over the counter'. Any views on these would also be appreciated.
If this was the early stages of MS would the use of ABC be indicated ?
In the UK it appears that prescription of these drugs is highly limited (due to cost perhaps ?)and totally inconsistent.
Dear John,
Thank you for your question. You are right, the symptoms that you describe would be consistent with a problem within your cervical spinal cord. Brisk reflexes on examination would also be consistent. It seems to me that you had the appropriate battery of tests performed initially. However, if your symptoms are getting worse, it might be time to repeat at least some of these tests. It is always very difficult to discuss a case without having the opportunity to perform an examination. Your symptoms could be caused by multiple sclerosis, although I don't find in your report the 2 criteria which explain the adjective "multiple" in MS : that is, multiple episodes over time (it looks like your symptoms are permanent, with some fluctuations), and multiple neurological systems involved (all of the symptoms that you describe could be explained by a single problem in the cervical spinal cord). In summary, MS needs to be ruled out, but is not certain at this point. If the tests are repeated and are normal again, several years after he onset of symptoms, the likelihood of this being caused be MS becomes very low.
The fact that all tests were negative is somewhat irritating, I can understand this. It is also reassuring, because it rules out major problems. You only describe sensory symptoms, which can be quite annoying, but it is also reassuring that you do not develop weakness in your limbs or other new symptoms. It happens sometimes that the tests do not lead to any diagnosis. In this case, we usually monitor the neurological status, repeat the tests if necessary, and treat the symptoms for themselves. Your burning sensations can be treated even if no diagnosis is made eventually. But in order to start a disease-specific therpy, it is necessary to obtain a diagnosis of course. As an example, and to answer your question, if you were diagnosed with MS , even at an early stage, we would consider initiating a long-term treatment with one of the "ABC drugs", because these treatments are preventative, but they cannot reverse existing deficits. But as you know, these treatments are all injectable, have side effects, and are very costly. It wouldn't make sense to prescribe one of these medications without being sure you have MS. A lot of MS patient take vitamins and supplements, and we do not forbid them to do so, although we still miss scientific evidence of their efficacy. However, I would no consider you as an MS patient at this point.
To summarize, if there is a change in your condition, I think it is legitimate to repeat diagnostic testing. If a diagnosis is made, then specific treatments may be initiated. If no diagnosis emerges, then your symptoms can be treated if they have a significant impact on your life. I hope this helps.
Follow Ups:
Myelitis or beginings of MS ? bke 6/17/1999
(1)
Re: Myelitis or beginings of MS ? CCF Neuro[P] MD, RPS 6/26/1999
(0)
Myelitis or beginings of MS ? John 6/14/1999
(7)
Re: Myelitis or beginings of MS ? CCF Neuro[P] MD, RPS 6/26/1999
(0)
Re: Myelitis or beginings of MS ? MS'er 6/16/1999
(5)
Myelitis or beginings of MS ? CCF Neuro[P] MD, RPS 6/17/1999
(4)
Re: Myelitis or beginings of MS ? MS'er 6/17/1999
(3)
Myelitis or beginings of MS ? CCF Neuro[P] MD, RPS 6/18/1999
(2)
Re: Myelitis or beginings of MS ? Pam 6/19/1999
(1)
Myelitis or beginings of MS ? CCF Neuro[P] MD, RPS 6/26/1999
(0)