Mastering Multiple Sclerosis
A Guide To Management

Partial Lesions Of Sensory Pathways

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Optic Neuritis - Sometimes there is no pain. Sometimes pain occurs without much Visual loss. Usually the pain is not excruciating, but it is often nasty and uncomfortable.

It results from new MS damage to the Optic Nerve which irritates the tissue immediately surrounding the nerve. A few days to two weeks after the inflammation has subsided and before Vision returns, the pain disappears.

No treatment is needed, traditionally we prescribe Prednisone or Dexamethasone to relieve the pain of inflammation.

Such medications taken during an attack probably do not improve Visual Acuity over a lifetime, just as treatment for other acute exacerbations fails to change the long term course of Multiple Sclerosis.

Almost every MSer will eventually have Optic Neuritis. Visual Evoked Potential testing can provide evidence of previous attacks in MSers who have never had Visual symptoms.

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Weakened muscles cannot support the body as they were ment to so they work doubly hard. Activities that would be normal for physically healthy people are too taxing, for Spastic muscles and they react with pain.

Sometimes backache occurs for the same reason. Weakened leg and back muscles support the back poorly, resulting in stretched and painful ligaments.

Treat these pains with heat and rest, but once you are rested, strengthen those muscles with physical therapy, to keep the pain under better control.

If the pain is unresponsive to routine pain medications, NonSteroidal AntiInflammatory agents like Naprosyn are useful.

Tight Spastic muscles hurt after exercise. In walking normal muscles that control each joint relax and tighten alternately, to keep the body moving properly.

Spastic muscles do not relax as they should. Instead, they pull against each other at every step. Spastic muscles aggravate exhaustion. They hurt after you walk, and ache in the evening after a day's activities.

People with pain in Spastic muscles know they have Spasticity because of ankle Clonus and spontaneous leg cramps. If you have this much Spasticity and its resultant pains, use Lioresal or Dantrium.

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Painful spasms result only from extremely severe and uncontrolled Spasticity. At this stage the muscles are usually completly paralyzed for voluntary motion.

They develop a life of their own and refuse to relax, causing severe pain. Legs are most painful when both flexor and extensor muscles go into Spasm at the same time

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Lhermitte's Sign is common among MSers. Lesions of many kinds in the Cervical (neck) Spinal Cord can produce it; but, it is usually found mainly in MS.

The sensation is generally described as electrical, or tingling. It may shoot down the back of both legs, out one arm, down one side of the body. The distribution depends on the exact site of the lesion.

It usually occurs when the neck is bent forward, but lasts only a moment. It then disappears whether or not the neck is straightened. Occasionally it remains as long as the neck is bent.

Although it almost always comes from a plaque in the Cervical Spinal Cord, it can affect the lower extremeties as well. Like most MS symptoms it comes and goes on its own without treatment, and has no special significance for prognosis.

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Infections cause pain. Pain is one of the body's normal warning signals and should be carefully investigated. If you have pain when urinating look for a bladder infection.

Is there pain in your chest? Is it caused by Pneumonia or Bronchitis? Get an accurate diagnosis.

When you develop a new pain examine yourself to determine if you need professional help. Sometimes it is better to call when you don't need help rather than not call when you really do.

Tegretol (Carbamazepine) and Dilantin (Phenytoin) are primarily AntiConvulsants. However, they also relieve certain pains arising in the Nervous System.

Most MSers never need Tegretol because their pain usually responds well to minor analgesics like Aspirin, to Dilantin, or to AntiSpastic medications like Lioresal.

Occasionally, Tegretol is an excellent medication for relieving pain. But read the warnings, before you start using it.

Tic Douloureux is an uncommon and extremely painful complication of MS. Because it is so rare, it is frequently misdiagnosed.

The pain is different from the pain of a bad tooth. The distribution of pain is limited by the anatomy of the Trigeminal Nerve.

This nerve supplies sensation to the skin of the face, forehead and front of the scalp, to the insides of the cheeks and nasal passages, to teeth and gums and to the anterior two thirds of the tongue.

Tic Douloureux usually occurs in only one division of the nerve's distribution, most commonly the second which serves the inside and outside of the cheek, back across the face towards the ear, and the upper teeth.

The pain does not ache as an inflamed tooth does. You feel an extraordinary intense burst of pain that lasts a second or two, occasionally followed by minutes of aching after-pain.

A volley of painful shots may be set off by touching certain parts of the skin or the inside of the mouth.

These are called "trigger points" and the suffer may find it impossible to eat or shave without first touching the trigger point repeatedly to set off a series of tic pains. Thereafter, a brief pain-free interval occurs that allows the suffer to do what needs to be done.

Tic Douloureux is the only kind of pain an observer can actually see. The suffer freezes suddenly in mid-sentence as the pain hits. There is perhaps a brief grunt of pain.

If a series of shots occurs, everthing stops until they have passed; thus the name, Tic (sudden jerk) Douloureux (caused by pain). Tegretol usually stops the pain.

It often disappears after the first half-tablet and may be controlled throughout each 24 hours with repeated doses.

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Plaques in the Sensory System often cause complaints like "numbness from here on down". But MSers may also develop nasty burning irritable Sensory change from here on down or Sensory changes in just one region.

The distribution of these complaints suggests partial lesions of the Lateral SpinoThalamic Tract or the entry zone to the Dorsal Root of an individual segment of the Spinal Cord.

Neurological examination may reveal mild diminution of pinprick perception in the painful area, but when the pain is finally felt, it is sharper than normal and more disagreeable.

Usually the discomfort is minor, occasionally there is severe pain that requires attention. If you develop nasty, irritating, burning Sensory loss that really bothers you, Dilantin may help and Tegretol will stop it.

Try Aspirin and related minor pain medications first. Try Dilantin to see if it will interrupt the pain.

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If these measures prove inadequate, use Tegretol if your pain warrants the risk of other side effects.

Remember the expense and read about the potential hazards of Tegretol. Decrease the dose periodically and if the pain does not return, stop the medication.

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Painful tonic seizures are uncommon among MSers and usually only occur in advanced cases.

The attacks are strickly limited to one side of the body. The seizures generally are very painful, but consciousness remains completely normal. Tonic Seizures usually stop after a period of time.

Current management includes Tegretol if Dilantin and Phenobarbital are ineffective. Plan to stop treatment after several weeks to test whether it is still needed.

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These attacks usually occur in MSers with serious disability although they were the first symptoms of MS in a few reported cases.

It is thought that the source of these attacks is a single plaque in the motor system of the Brain; but this has not been proven with certainty. To date tonic Seizures are characteristic only of MSers, but very uncommon even among them.

This suggests that their occurrence might depend on a special combination of lesions in the Brain, BrainStem and perhaps the Cerebellum.

Warning About Use Of Tegretol

Tegretol is a potent AntiConvulsant which often stops Epileptic Seizures uncontrolled by other medications. Despite its excellence as an AntiConvulsant it is not usually the first medication given to adults.

It's expensive and may have serious side effects. The most serious complication, although rare, is death from Aplasic Anemia.

Tegretol is used to relieve the devastating suffering caused by uncontrolled Seizures, betting against the slim chance of Aplastic Anemia.

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Aplastic Anemia usually occurs without known cause. The bone marrow stops producing white blood cells, red blood cells and platelets.

In one case, a previously healthy person complains to the doctor of fever, sore throat, weakness, fatigue, easy bruising or unusual bleeding. The blood tests disclosed far advanced aplastic anemia. Sometimes treatment is effective, often it is not and the person dies.

Aplastic Anemia is an extraordinarily rare complication. With early recognition of bone marrow damage, Tegretol can be stopped immediately. This is usually followed by prompt and complete recovery.

Guard against aplastic anemia caused by Tegretol. Before you take your first tablet, be sure your blood is normal.

Then have regular cbc (complete blood count) and platelet counts for as long as you use this medication. At the beginning, it is wise to have blood tests about every week or two.

If there is no evidence of bone marrow suppression after several months, testing can be decreased to once a month. If you need Tegretol continuously, cbc and platelet counts may be done every other month for as long as you use Tegretol.

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The first doses of Tegretol may cause blurred Vision, double Vision, vomiting and even staggering. If you start too fast, these side effects can lay you low for days at a time.

Such side effects cause no permanent consequence, just temporary discomfort. They are unrelated to aplastic anemia, and are not a MS exacerbation. They merely indicate that your Nervous System is unused to the medication.

Do you remember your first glass of wine and the sleepiness and unsteadiness it produced?

Tegretol acts much the same. As your system adjusted to alcohol, it will adjust to Tegretol in a week or two. Start again with a smaller dose.

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Some people can never use Tegretol. Severe side effects are uncommon but judge the value of Tegretol against its side effects. If it works well with just a few, it is worth using.

If the benefit is small or the effects severe, stop it and consider one of these substitutes. AntiDepressant medications like Elavil are often quite effective pain relivers.

Like Tegretol, Dilantin is an AntiConvulsant that can also stop some of the pains of MS. It is less effective in controlling pain, but is also far less toxic. If you have dorsal root entry zone pain, try using Dilantin at 300 mg. each night.

If you have no relief, increase the dosage to 400 or even 500 mg. per day. However at these dosage levels, Dilantin may cause blurred Vision, double Vision or staggering.

If you get pain relief without side effects, Dilantin is your best choice. If you have severe pain that is not relieved by Dilantin, or if you must accept side effects to control it, switch to Tegretol.

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If you decide to use Tegretol, begin slowly. One half tablet 100 mg. is a proper first dosage. If there are no side effects from that dose, take another half tablet after 8 to 12 hrs.

If you still feel fine, increase the dose the next day to one half tablet three times a day. Then increase the dose as rapidly as your side effects allow, until your pain stops.

Most people have arrived at an effective dose within a week or 10 days. Tegretol has a biological half life of 8 to 15 hrs., so most people need three doses over a 24 hr. period.

MS pains usually respond to low doses of Tegretol. People with serious Seizure disorder often use 2000 mg. per day. MSers often find relief from pain at 1000 mg. per day or less.

Unlike Seizure disorder, MS pains that respond to Tegretol often last only weeks or months.

Therefore, MSers can use Tegretol briefly, then stop temporarily or decrease the dose by 100 mg. per day to see if they still need it. If pain does not return after a week, decrease the dose again.

Keep yourself on the smallet dose that controls your pain. Eventually, most MSers can discontinue Tegretol and other pain pills until the next attack of pain.

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