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.
Posted By CCF Neuro[P] MD, RPS on June 17, 1999 at 15:47:34
Sorry to hear about your pain. A question, as most MS patients have severe spasticity, are part of your muscle pains cramp like pain? If this is the case, you may ask your physician about baclofen. This is a medication to relief the muscle spasms one gets with MS. What was the dose of neurontin? One can really boost up the dose of this to even 5 - 6 grams a day. The loss of effect might be the spasm over-riding the neuropathic pain. I hope this helps.
CCF Neuro MD
Posted By CCF Neuro MD msf on June 14, 1999 at 08:57:11
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.
Posted By MS'er on June 16, 1999 at 21:27:03
I have MS,was diag. in 1986 with RR MS now as CP MS and visual disturb.s fatigue and pain are my main symptoms. OHHHHH the pain is hardly bearable and why I think I was driven to piggy back on to your post.
I have posted many times before and was given the advise to try Neurontin, Amitrypoline or Tegretol. My Neuro sent me to a Physiatrist for pain management and she started me on Neurontin. The Neurontin was such a relief but only lasted about 30-45 days. Any idea'swhy it stopped? I am taking one 10 mg amitrypoline at night & at first also seemed to be helping me get a good nights sleep but now it is no doing anything. Any idea's why they've stopped? I told my Physiatrist this was really concerning me that at age 48 three med's are avail to help with my MS pain and two don't seem to be working and she said there are lots of alternatives!!!! Then I read her report to my Neuro and she said it looks like if the Paxil does not work we only have Tegretol left to try!
Please reply and I apologize again.
Posted By MS'er on June 17, 1999 at 21:51:21
Thank you for replying! I was up to 300 MG's three times a day of the Neurontin. My Physiatrist made not mention of upping this..?? I'll suggest it if you think is sounds plausible.
My MS pain is from the base of my skull, down the entire right side including my fingers and toes. I've questioned this forum and the Harvard and my Physiatrist about spasticity to see if mine was this and they all say it is like getting a big muscle cramp so I had discounted that idea. The Neuro Phsychologist I saw today for the third time said it might only be a small spot being affected in the brain and something about a message being sent down but not coming up correctly?? I really did not fully understand what she was saying, but she has started me reading and learning about self hypnosis as she said it my pain may not be able to be helped by med's. I told her that sometimes two Hydrocodone's don't even seem to help. That in the beginning that Flexeril helped wonderfully to get my sleep and it seemed to help the pain. Does this tell us anything about it might be spasticity?
My pain is always there and by mid afternoon it has built up to the level of making me feel like doing very little as it hurts. It seems to get a burning pain sensation to such a pitch I describe it as a 10 on a scale of 1-10. I've told my Dr.s like if you have a bad tooth ache like a root canal pain, like a headache so bad you feel like hitting you head against a wall as a comparison but I'm only describing what one might relate to as my pain is my entire right side of my body except the head. If this sounds anything like spasticity, please let me know as I will suggest the baclofin.
I take my previous reply from CCF suggesting the Neurontin, Amitriptyline and Tegretol in case my Dr.s run out of idea's and I believe this is why they tried the Neurontin. I am on 10 mg's of Amitriptyline and have been for several weeks and it too seemed to really help my sleep at night but seems now to be doing less. Should we up the dosage as a trial? Any idea's would be greaaatly appreciated as I'm sure you know MS pain is so hard to treat. Thank you and Bless you.
Posted By CCF Neuro[P] MD, RPS on June 18, 1999 at 16:19:54
The burning pain that you are describing is a sensory neuropathic pain. Actually, the medication neurontin should help in this type of pain. The dose that you mention is usually what we start with and then we titrated (incease the dose) until we see an effect. We have many patients on 4-5 grams of neurontin a day. I would ask your doctors if you might try to increase the dose and see what happens.
Spasticity is where the muscle tone is increased. Your muscles feel like they are slightly contracted to various degrees. The constant increase in tone causes pain. Baclofen is for this type of muscle problem. However, I think that your initial feeling that your burning type pain was not spasticity was correct.
MS affects the fat tissue that enwraps the neuron projections that run through your body. MS affects mostly the brain and spinal cord and the degree of demyelination (loss of this fatty coat around the projections or axons) varies from patient to patient. It sounds like the areas affected in your case are those that have sensation function. These could be in your brain and/or spinal cord. When these neurons do not communicate properly (due to the fatty substance being altered) then you feel numbness, pain, or even loss of feeling all together. When the neurons are involved in muscle movement or tone, then you get spasticity.
We often use Elavil or amitriptylline to help patients sleep, control migraines, and reduce depression (although the latter requires much higher doses). Usually, 10 mg is around the starting dose and this too can be raised or lower to achieve the desired effect. You may ask to have the dose raised a tad.
I hope the suggestions help.
CCF Neuro[P] MD
Posted By Pam on June 19, 1999 at 00:37:38
My husband (49) has been diagnosed with MS for about a year. His sister who is 42 has been in a nursing home for 8 years with MS. The usual symptoms have been lesions on his brain stem, brain, spinal cord, loss of hearing in his left ear and some in his right, numbness on his left side, head is dizzy and feels like it is floating, choking, drooling, blurred vision, extreme fatigue, blotchy red spots that turn brown on feet and across back under the skin, drooping mouth, etc. He is using a brace and cane to assist him with his walking. Recently he had a sleep test that showed him stopping breathing an average of 48 times per hour. My question is wanting to find research or reading on breathing difficulties with MS patients? Is this common? The myelin around his spinal cord is disintegrating and leaving nerves exposed. Does anyone know if MS can cause breathing problems?
Posted By CCF Neuro[P] MD, RPS on June 26, 1999 at 16:57:38
Sorry to hear about your husband. Sleep apnea can occur in any person. MS can also induce a sleep apnea depending on the area that is affected in the brain. The exact etiology of his sleep apnea would depend on the brain area affected, but you do mention his brainstem region (an area that could cause sleep apnea). Overweight people with small chins, or people with fatty palates that collapse during sleep can also cause sleep apnea. A combination of the above is also possible.
This condition can be treated. I would recommend seeing a sleep expert as night time CPAP can help increase sleeping oxygen saturation and correct the problems induced by sleep apnea.
I hope I helped alittle.
CCF Neuro MD
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