Questions about MS

[usedtobenormal]

I am a 37 year old female. I am not on any meds.  I have been diagnosed as highly probable MS.  I have several small 9 "stable" white matter spots on my MRI most visible with FLAIR.  A questionable spot in the corpus callosum. Borderline VEPs, negative LP. No spinal cord spots.
The differential diagnoses have been ruled out.My symptoms began eight years ago but have increased in intensitiy and duration since.
I do have several symptoms which include the following:
Optic neuritis, (three times)both unilateral and once bilateral
Numbness
Facial Tingling, especially the left ear
My legs extremely tingle after exercise
My most bothersome almost daily issue is "brain fog" that seems to come and go.  During this brain fog or "groggy" period, I feel so strange.  I cannot think clearly, speak clearly, see clearly, or hear clearly. I feel uncoordinated. Even walking feels strange. I just try to function the best I can.  I work in a demanding professional field and I try to do the best to hide this when it happens.  It can last for several hours for several weeks.  Then seems to almost completely resolve only to return ago several weeks later.  Sometimes being in a busy place like Walmart seems to bring it on temporarily. But it also can happen when I am at home and nothing eventful is going on.  

My question is how many cases of highly probable MS convert to definate MS?  Should I be more proactive in obtaining medication? Is there anything I can do about this brain fog?
Is there anything I can do to prevent definate MS?  

Thank you for your help.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.    
   Multiple sclerosis does not manifest in just one degree of severity.  Some people can have very mild MS and be diagnosed in their 30s, 40s and even 50s.  Given their mild MS they may never reach all the strict requirements for the diagnosis and are able to live their life with minimal affect of the MS.  On the other hand some people are diagnsosed in their teens and early twenties with devasting MS and are in a wheel chair for their mid to late thirties.  There is a whole spectrum inbetween these two extremes.  I would recommend that you get regular  (often yearly) neuroimaging to assess the progress of your current lesions and to report any new symptoms right away to evaluate for GAD-contrast enhancing lesions.  Treatment at your stage would not be unreasonable, I would contact a MS specialist to discuss disease modifying therapy.  Despite our therapies, we are not currently able to stop the progression of MS.
  The "brain fog" that you describe may be related to a number of things.  The most common thing that causes these symptoms is depression.  A trial on a anti-depressant may be helpful for you.  Other possible explainations are confusional migraine auras and seizures.  An EEG (brain wave test) would be reasonable since people with MS do have a higher incidence of seizures.
I hope this has been helpful.

[Jadis]

Just curious, but have you had multiple MRIs done? With MS, the MRIs tend to change over time in that new lesions usually appear. Also, the size and location of the lesions are very important.

Have you had blood work done to rule out connective tissue diseases  (ie Lupus, Sjogren's, antiphospholipid syndrome), infectious diseases such as lyme, or vitamin deficiencies?

There is evidence that going on the MS drugs at the very first episode will be beneficial in the long term. However, just make sure that alternative conditions have been ruled out.

[JCmcc]

Dear: “Used to be normal,”

I am not yet a physician but feel that I may be able to offer some suggestions to you regarding your stated pathology and the unknown etiology you are experiencing.
I believe that findings ones diagnosis is first a massive responsibility of the patient. You obviously have kept good record of your experiences with these annoying circumstances. As a man (age 28), misdiagnosed with Multiple Sclerosis, when everything appeared that way simplistically, found my own diagnosis and it was upheld by Yale, I have dedicated my life to being helpful when I can to others who have no answers. It is detrimental to your health, as well, to be left in the dark.
I did notice a couple of hallmark variables in what you wrote and I would like to ask you to consider the fact that differential dx (diagnosis) has not truly been ruled out, for example, we are human and we miss the obvious ever so often. Therefore, it may be possible that something got missed. I write this for a few reasons.
The fact that your LP turned up negative and yet you have sclerosis proven on an MRI is highly indicative that you may have a version of MS that is caused by Lyme disease. You can learn more about LD by going to lymenet.org where you can read and ask questions to LD patients. This differential dx is often missed by most physicians due to the fact that the blood tests are admittedly unreliable. The dx is clinical and requires a pathology, thus, the patient is nearly in charge of this diagnosis; he can make or break it for himself if he does not know or does not share a clear and factual history.
Ever symptom you mentioned has been reported in LD, as well as the clinical findings, and though LD patients can have positive LPs, they are more likely to show up negative results.
What catches my eye for LD the most (I am not a LD fanatic) are the following variables:
1. “My legs extremely tingle after exercise” –A hallmark in LD and not so much in MS.
2. The waxing and waning of your symptoms, for example, MS attacks do not occur from minute to hours, but rather, as I am sure you know from weeks to months. LD is known for being a condition that w/w.
Most would say that there is hardly anything you can do from preventing the track of MS aside from the traditional medications, which for most, give the patient more time before it progresses. There is, however, and experimental and rather controversial therapy which is called “Low Dose Naltrexone” most commonly referred to as “LDN.” I would suggest going to google.com and entering “LDN” for some personal research. It has been reported to stop disease activity in MS, et al, for thousands. Most MDs either know nothing about it, or, disagree. There are no side effects, it runs around thirty dollars per month, and is compound. It is given in dosages from 1.5 mg-4.5 mg.
I hope that I was helpful, but, I really suggest that despite locale you look more into LD and so some research. You may stumble upon something definite.

Good Luck!
JCmcc.

[JCmcc]

Further Information:

DEFINITIONS OF SYMPTOMS PERTAINING TO LYME DISEASE (General Symptoms)
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Translated into Lay English
by ***



o Nose Tingling
o Neck Stiffness
o Neck Pain
o Jaw Pain
o Jaw Stiffness
o Jaw Cramping
o Lock Jaw (Momentary)
o Sore throat
o Clearing throat
o Phlegm (Chronic)
o Hoarseness
o Runny nose
o Decreased Hearing
o Plugged Ears
o Buzzing in Ears
o Pain in Ears
o Sound Oversensitivity
o Ringing in Ears
o Popping in Ears
o Eye Floaters
o Eye Pain (In)
o Eye Pain (Around)
o Eye Pain (Behind)
o Blurred Vision
o Double Vision
o Vision Loss
o Peripheral Waves (Eyes)
o Phantom Images (Eyes)
o Flashing lights (Eyes)
o Light Sensitivity (Eyes)
o Hair Loss
o Shortness of Breath
o Thick Speech
o Slurred Speech
o Slow Speech
o Stammering Speech
o Dementia
o Diarrhea
o Constipation
o Difficulty Swallowing
o Drooling
o Short Term Memory Loss
o Long Term Memory Loss
o Clumsiness
o Headache
o Disorientation
o Loss of Sex Drive
o Sexual Dysfunction
o Bladder Dysfunction
o Bowel Dysfunction
o Fever (Recurring)
o Infections (Recurring)
o Low Temperature
o Migrating Pain
o Menstral Pain/Irregular
o Breast Pain/Discharge
o Upset Stomach
o Nausea
o Bone pain
o Joint pain
o Stiffness (Joints)
o Stiffness (Extremities)
o Chest pain
o Muscle pain
o Spasms
o Cramps
o Night sweats
o Day sweats
o Unexplained Chills
o Heart Palpitations
o Fatigue
o Weakness (Limbs)
o Partial Paralysis (Limbs)
o Lymph Node Pain
o Lymph Node Swelling
o Dental Pain (Unexplained)
o Pain (generalized)
o Poor balance
o Increased Motion Sickness
o Lightheadedness
o Wooziness
o Heavy Headedness
o Insomnia
o Depression
o Irritability
o Mood swings
o Anxiety
o Weight Gain
o Weight Loss
o Testicular pain
o Pelvic pain
o Increased Alcohol Affect
o Worse hangover
o Allergy Sensitivity
o Chemical Sensitivity
o Unidentified skin blotches or freckles



SYMPTOMS REQUIRING CLEAR DEFINITION
(Other Symptoms)
(Definitions Below)
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• Internal Vibration
• Pruritis
• Erythema Migrans
• Maculopapular Lesion/s
• Paresthesias
• Numbness
• Bell’s Palsy
• Vertigo
• Burning
• Heat Patches
• Stabbing Pain
• Shooting Pain
• Lhermitte’s Sign
• Short Term Memory Loss
• Long Term Memory Loss
• Head Pressure
• Lesions/Plaques (Brain)
• Lesions/Plaques (Spine)
• Twitching
• Fasculations
• Interstitial Cystitis
• Sphincter Dyssynergia
• Carpal Tunnel Syndrome
• GERD
• Malaise
• Gait
• Ataxia
• Sleep Apnea
• Atrophy
• Energy (Nocturnal)
• Spasticity
• Tremor
• Rigidity
• Bradykinesia
• Myoclonic Jerking
• Clonus
• Masking
• Micrographia
• Dysphagia


Internal Vibration: -Term is self explanatory. Refers to a non-painful sensation within the internal body that can present it self anywhere within or have a mass internal effect. The sensation can be described as an internal vibration, flurry, rain storm, to name few. Symptom is non-specific.

Pruritus/ani: -Itching is a symptom we have all experienced but cannot easily describe or define. It is a peculiarly uncomfortable skin sensation. That much is certain. It may feel as if something is crawling on (or in) your skin. Itching can be diffuse (generalized) or localized -- all over or confined to a specific spot -- and there are many causes of diffuse and localized itching. Perhaps the best definition of itching is by the response it evokes -- it is a feeling that makes you want to scratch.

Erythema Migrans: - Noted as the “Bull’s Eye Rash” which is specific to Lyme disease. It appears like a Bull’s Eye and may or may not be at the site of the tick bite. Lest than 15% of people infected with this condition recall a rash. There are other non-specific rashes and skin lesions that are believed to have direct correlation to this etiology.

Maculopapular Lesion: -Noted in several cases, patient can have one to many. They appear dark red and are generally rectangular. They may or may not be associated with pruritis.

Paresthesias: -Abnormal nerve sensations such as pins-and-needles, tingling, burning, prickling or similar feelings are all known as "parethesias". They usually result from nerve damage due to pressure (such as a pinched nerve), entrapment, or diseases. Continued nerve damage can lead to numbness. Paresthesias can affect various parts of the body. Hands, fingers, and feet are common sites but all are possibilities. Afflictions of specific nerves or spinal nerves can also cause parethesias in particular skin areas of the body.

Numbness: -Deprived of the power to feel or move normally. A general loss of feeling or sensation that can be topical or complete. Can effect any part of the body.

Bell’s Palsy: -Partial facial paralysis from facial nerve damage. Bell's palsy is a form of facial paralysis resulting from damage to the 7th (facial) cranial nerve. This same condition can exist within the stomach region.

Vertigo: -Feeling that the room or person is moving or spinning. The person can also experience sensations that indicate altitudinous changes, i.e. drops/climbs. Vertigo is the sensation that the room is moving or spinning, or that the person is moving or spinning within the environment. The term "dizziness" is often used for milder feelings of lightheadedness, but this word needs to be distinguished from symptoms such as balance difficulty, fainting, or general weakness. True dizziness is a lightheadedness or a sensation that you are about to faint. True vertigo requires the sensation of movement. Any dizziness or vertigo symptom needs prompt professional medical advice.

Burning: -Sensations that feel like burning in different parts of the body. It varies from mild and benign to extreme. It is a part of parethesias.

Heat patches: -A part of parethesias. A sensation of hot spots in different areas of the body.

Stabbing pain/Shooting pain: -A part of parethesias, self explanatory.

Lhermitte’s Sign: -Lhermitte's symptom is that of an electrical sensation in the spine or limbs on neck flexion. It can also cause buzzing patches throughout the limbs and or face.
Pressure in Head: -A sensation of “water on the brain” and pressure that is variable in affectation.

White Matter Lesions: -Plaques within the brain or spinal cord that are demyelinating. They are generally non-specific and have certain evidences that specify them more clearly. Such as ovoid lesions that are periventricular are most commonly seen in multiple sclerosis and Lyme disease.

Twitching/Fasciculations: -There are benign fasciculations that occur. Involuntary contraction of the muscle fibers innervated by a motor unit. Fasciculations can often by visualized and take the form of a muscle twitch or dimpling under the skin, but usually do not generate sufficient force to move a limb. Twitching is listed as an alternate name or description for symptom Twitches. For a medical symptom description of 'Twitching', the following symptom information may be relevant to the symptoms: Twitches (symptom). However, note that other causes of the symptom 'Twitching' may be possible.

Interstitial cystitis: -Interstitial cystitis (IC), one of the chronic pelvic pain disorders, is a condition resulting in recurring discomfort or pain in the bladder and the surrounding pelvic region. Interstitial cystitis is an odd disease that is difficult to diagnose. It causes pain and irritation to the bladder and pelvic area, and thereby causes various urination symptoms. Its cause is unclear, but may be autoimmune, or perhaps only some cases are autoimmune. Diagnosis of IC is often by ruling out all other possible causes of bladder symptoms. Confirmation of a diagnosis is difficult, and the most compelling evidence for diagnosis is often from surgery and biopsy, rather than any specific urine or blood tests.

External Sphincter Dyssynergia (DESD): -The sphincter externalizes itself creating what appears to be a sensation of a small soft golf ball size addition around the anus.

Carpal tunnel syndrome: -Hand or wrist problems; often from repetitive motion. Carpal tunnel syndrome occurs when tendons or ligaments in the wrist become enlarged, often from inflammation, after being aggravated. The narrowed tunnel of bones and ligaments in the wrist pinches the nerves that reach the fingers and the muscles at the base of the thumb.

GERD: -Reflux refers to the stomach acid rising up the "wrong way" back up the esophagus and sometimes into the mouth. When this occurs chronically it is probably caused by Gastroesophageal Reflux Disease (GERD). Symptoms typically include recurrent heartburn, reflux, and regurgitation, but may also include chest pain, hoarseness or swallowing difficulty; see also other symptoms of GERD. Diagnosis of GERD requires consideration of other possible underlying conditions causing symptoms, such as hiatal hernia.

Malaise: -General feelings of discomfort or being ill-at-ease.

Gait: -Difficulty walking, such as Ataxia.

Ataxia: -Clumsiness, loss of balance, inability to walk a straight line.

Sleep Apnea: -Sleep apnea is a common disorder in which breathing stops during sleep for 10 seconds or more, sometimes more than 300 times a night. The hallmark of the disorder is excessive daytime sleepiness and compromised quality of life, including significant social and emotional problems.

Atrophy: -General name for any wasting away of muscles or body tissue.

Myoclonic Jerking: -One may be jerked or jolted awake by an unknown cause. Action myoclonus is characterized by muscular jerking triggered or intensified by voluntary movement or even the intention to move. It may be made worse by attempts at precise, coordinated movements. Action myoclonus is the most disabling form of myoclonus and can affect the arms, legs, face, and even the voice. This type of myoclonus often is caused by brain damage that results from a lack of oxygen and blood flow to the brain when breathing or heartbeat is temporarily stopped.

Clonus: -Clonus is repetitive, rhythmic contractions of a muscle when attempting to hold it in a stretched state. It is a strong, deep tendon reflex that occurs when the central nervous system fails to inhibit it. Clonus is not the same thing as myoclonus, which is irregular and uncontrollable jerks of a muscle or group of muscles (see above).

Expressed Energy Nocturnal: A sensation that one wants to run while trying to fall asleep. All of these symptoms may be present due to restless leg syndrome. Restless legs syndrome is a sensory-motor (movement) disorder characterized by uncomfortable sensations in the legs, which are worse during periods of inactivity or rest or while sitting or lying down. There is often a positive family history of the disorder.

Spasticity: -Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with gait, movement, and speech.
Tremor: -Tremor in the hand or foot on one side of the body, or less commonly in the jaw or face. It appears as a "beating" or oscillating movement. Because the tremor usually appears when a person's muscles are relaxed, it is called "resting tremor." This means that the affected body part trembles when it is not doing work, and it usually subsides when a person begins an action. The tremor often spreads to the other side of the body as the disease progresses, but remains most apparent on the original side of occurrence.
Rigidity: -Rigidity, also called increased muscle tone, means stiffness or inflexibility of the muscles. Muscles normally stretch when they move, and then relax when they are at rest. In rigidity, the muscle tone of an affected limb is always stiff and does not relax, sometimes resulting in a decreased range of motion. For example, a person who has rigidity may not be able to swing his or her arms when walking because the muscles are too tight. Rigidity can cause pain and cramping.
Bradykinesia: -Bradykinesia is the phenomenon of a person experiencing slow movements. In addition to slow movements, a person with bradykinesia will probably also have incomplete movement, difficulty initiating movements and sudden stopping of ongoing movement. People who have bradykinesia may walk with short, shuffling steps (this is called festination). Bradykinesia and rigidity can occur in the facial muscles, reducing a person's range of facial expressions and resulting in a "mask-like" appearance.
Postural instability or impaired balance and coordination: -An experience of instability when standing or impaired balance and coordination. These symptoms, combined with other symptoms such as bradykinesia, increase the probability of falling. People with balance problems may have difficulty making turns or abrupt movements. They may go through periods of "freezing," which is when a person feels stuck to the ground and finds it difficult to start walking. The slowness and incompleteness of movement can also affect speaking and swallowing.
Micrographia: - small, cramped handwriting.
Masking: -Loss of facial expression.
Dysphagia: -Difficulty or pain when swallowing.

[usedtobenormal]

Thank you so much for your comments.  I really do appreciate your help.

During my workup they did blood work, checked for vitamin deficiency, checked for infectious disease, ruled out vascular diseases.

My MRI states my spots are in the subcortical U fibers in the parasagittal gyri.  Also in the left centrum semoivale near the subcortical U fibers in the midparietal region.  Also, in the right frontal region at the level of the lateral ventricals in the subcortical U fibers.  And one questionable spot in the body of the corpus callosum.  Two spots are seen in the frontal cortex just beneath the parasagittal gyrus.  All of the spots are less than 4mm in size. They are best seen with FLAIR imaging.

My radiologist did not note any change over 3 MRIs in two years.  My neurologist stated he felt there was a little change when he compared the spots but did not explain.


Thank you again for your responses.

[JCmcc]

Dear “usedtobenormal,”

Please keep in mind that I am not a medical doctor and that my contributions here are only to assist you and to help, and that, you should not take my contributions as a diagnosis or as a replacement for professional assistance.
With that said I read your response and have a couple of suggestions and points for you:

1. The blood work up for Lyme disease is not enough, unless, your blood was sent to IGENEX Labs in California and I would not accept Lyme disease as ruled out before you see a physician who specializes specifically in Lyme disease. I am unaware of your locale but if you are on the East Coast this will be much easier to obtain. I would suggest going to ILADS.org (The International Lyme disease and Associated disease Association of Physicians). Again, this may not be Lyme disease, but you need to rule that out with clarity and any neurologist on this board will tell you that this diagnosis is clinical and is not based solely on positive Igm blood tests.

2. I would not give much attention to the MRI not changing unless of course you are considering traditional MS. This makes MS much more unlikely. Throw in the negative LP and you have something, as well. Though MS is not the same in every patient.

3. Remember that MS is a symptom not an etiology and that they are quite unsure of what causes it. A plethora of theories exist, such as, stress factors, genetics, locale, et al. Some believe that Lyme disease is the sole cause and that because it is so difficult to diagnose, that, it goes just the opposite-undiscovered. With that said these lesions would be considered suspicious and non-specific. An MRI with tons of lesions is not enough.

4. I have Lyme disease and like you I have lesions in the centrum semiovale, subcortical areas and in the corpus callosum, to name a few areas. FLAIR is suggestive as well, and, the size is of no importance.

A couple of questions:

1. Have you seen a neurologist who specializes in MS? If so, did he simply say probable or did he diagnose you with MS? If he saw these MRIs and new of your symptoms, specializes in MS and did not diagnose it fully; I would side on it being something else.

2. Do you often feel fatigue and a sense of malaise?


Regards,
JCmcc.

[JCmcc]

Dear, "Ihatepvc's,"
   Unfortunately the answer to your question is space and time. It seems much more unlikely that a person with MS would also have Lyme disease, when both conditions are considered rare though they are finding that LD is not so rare. There are many physicians who believe that MS is only that of LD and its effect on a particular patient, et seq. It is also true that MS is an etiology with several theories and no absolute answers at this time. For example many neuropsychologists believe that MS is a somatic disorder and sum it up in the following way to key questions:
1. Why would someone, say, in Washington State be more likely to have MS?
-Depressing weather, and environmental factors are accounted for there. Wisconsin follows, et al.

   To my knowledge it is not possible to distinguish "MS" lesions from that of LD lesions, both can have positive oligoconal band readsiong in lumbar punctures, as well as turning up positive on various tests such as EEG, to name a few.
   It is true that the MS pathology is different from the LD pathology and how symptoms unravel, but, could it be that this is the effect of two different strains of LD that present differently, even say, based on one's DNA, sex, etc.? For example men are more likely to have a progressive case than women, and, Black men even more likely to have a progressive case. There seem to be numerous factors involved in how LD or if you want to say "MS" effects a single person and take into account, in support of this, the often said phrase, "MS presents differently in every single person," and also keep in mind that stressful events such as child birth, the death of a loved on, et al, are all things that signal attacks-the same resides within LD.
   Finally, being apart of "MS" and LD life for a long time now I have seen far too many patients become so obsessed with it that they ignore other health problems and only focus their attention on that horror word, "MS!" Thus, these very individuals may be ignoring nearly prominent symptoms that could further point their physician to recognizing Lyme disease-keeping in mind that a diagnosis for both conditions is largely based upon pathology.
   I hope that I answered your question.

Good Luck!
JCmcc.

[bbcatz]

Are you saying you believe MS is in fact lyme disease? Just wondering cuz I have a definate dx of RRMS for 10 years now.

[JCmcc]

Dear "BBcatz"

   I am saying that I do not know. I am saying that I believe that it is possible, but that, other factos need to be proven. I firmly believe that we do not know-but-I am certainly saying that if MS is a separate etiology, that it is, quite rare in comparison to Lyme disease. Every single person with MS should be aware (because many neurologists and radiologists ignore this fact-though they know it is true) that MS and Lyme lesions cannot be distinguished from each other at all.


Hope I have been helpful to you,
JCmcc.

[Christie04_returns]

But aren't those virtually every possible symptoms of any and every possible medical illness or condition known to man?  

How on earth can someone make a diagnosis from a symptom list such as that?  

Just wondering.

[JCmcc]

Dear Christie,
  I am not a medical doctor and my advice and response is purely educational.
  With that said the answer to your question is yes and no. Every single symptom is variable and non-specific and the clue that these etiologies give us are distinct pathologies. For example a myriad of severe symptoms that wax and wan, as well as being in a heavily tick borne aread, et seq, and the progressiveness leads the patient and physician to ruling out other things until the answer is found-more than not-it seems that true answers are never found and that controlling the problem becomes the factual cause. For example-the cause of MS is unknown, and we know what he have to do to control it the best that we can. LD is the same thing-there is no certain cure, but it can be controlled for most. In that, and sadly, a patient may go through a period of being a medicine/drug ginnie pig in order to see responses in this pathology and to land a firm and clear diagnosis though admittedly this is not always possible. The pathology/pathogenesis leads us to the answers.
  I hope that I was helpful.

[Christie04_returns]

But you didn't ask usedtobenormal if he was located in a heavily tick infested area.  And most of the people who suggest LD as a diagnosis disregard the patients geographical location, saying it doesn't matter.

No, I'm still confused.  If I have many of those symptoms, I should consider myself as having LD?  Don't most people have many of those symptoms?  They are disturbingly vague, most of them.

[JCmcc]

Dear, "Christie_04"

   I have never said nor suggested that a patient diagnose himself, but, touched on the fact that I believe that a firm diagnosis is as much as a responsibility in many cases of the patient as it is of the physician. Naturally, this is not always the case. I have never suggested a diagnosis to any patient here nor have I suggested that they diagnose themselves. What I have said, however, was that LD patients can often find clues based a pathology of any of those symptoms in a combinatory effect and the pathology of waxing and wanning-which is not too common.
  Keep in mind that due to air travel most people travel and have been to various areas, and, it is always easier for such a diagnosis of LD to be made based on those facts if the patient is from such an area. However, I was born and raised in Seattle and have culture and clinical proven LD-not an endemic area. These ticks are located in most places-just not plethoras of them, most likely. Thus usedtobenormal, based on limited information, could possibly have LD or something tick born-no one knows, and I have not seen his pathology thus I did not suggest it as others have, "Oh yes, you have LD" or "I am sure that you have LD."
   Regarding "most people who suggest LD" I cannot answer for others, but, if you were look around at my posts you will see that often I point to the same thing, which is: not everything is attributed to LD. As well, most of these people mean well and folks should be aware that they are most likely not medical professionals and if they are, that, their advice is just that-advice. Their opinions, if not written as absolutes, is permitted or acceptable whether or not you like it. That is just the way that it is.
   Answering your second paragraph, which states, " If I have many of those symptoms, I should consider myself as having LD?"
This has never been implied by me nor affirmed by me. I would point more to the more severe symptoms as being red flags for many conditions-but as I have said repeatedly, these symptoms are variable and non-specific. Clearly, you are missing the understanding of pathogenesis.
   I do not see any of these symptoms as vague, for example, Lhermitte's Sign (look it up) is caused by spinal cord compression, so, you look into what can compress the spine and so on-but-it can be something small to something severe.
   Unfortunately I probably cannot help you any further here in understanding me. If you read my posts you will find that I am stronly against people here, even if they are medical students, et al, diagnosing, etc. I have not done that and I am very much against blaming everyones symptoms on LD.
   I hope that you realize that I have taken the time to answer your question to the best of my ability. However, I cannot take anymore space on this persons post to banter on ideologies and philosophies regarding diagnostics. This site is not designed for this.

Good Luck!
JCmcc.

[lat67]

usedtobenormal,

The brain fog can be the worse symptom of any disease.  I personally have been dx with lyme disease but did go to a MS clinic to rule MS out.  In the visit the neuroligist, who was amazing and considered to be one of the best MS specialists, mentioned a drug called Amantadine.  I did go on it and it was life changing.  I had more energy then I had had in years.  It is a drug used with Parkinson patients but they are having great luck with it for MS patients.
Feel free to email me if you like.    ***@****

good luck,

Lesley

[lat67]

just wanted to make sure you read my post.

Lesley

[young at heart]

Thought I'd add my 2 cents on this controversy.I have MS.There is 2 ways to determin MS from LD.No 1.spinal fluid if they check for myelin basic proteins if elevated,precurser for MS.No 2. A little more drastic is a biopsy of a brain lesion.I know of a few who have went the route of the biopsy of the lesions to get a proper DX.
In all honesty if someone with a neurological disorder they could fit into several catagories because so many of the disorders mimic one another and thats where our medical specialist come in.
On January 10th on ABC at 10 pm theres gonna be a show on about MS and LD.

[lat67]

I guess I will add my two cents worth as well.  I was dx with third stage lyme disease in May 06.  I firmly believe that MS and Lyme disease both exist.  I went to three Neuroligists, one at the Leahy clinic , who all ruled out MS.  Just a month ago I went to a MS clinic to finally shut the door on MS.  What the doctor said to me was my symptoms sounded like MS however all my testing and exam was normal. I asked him about Lyme disease and he said I certainly should look into it.  For two years I was convinced I had MS...I mean totally convinced.  Lyme disease can mimic MS however I believe the difference falls in the testing.
As far as the symptoms chart...i agree its crazy.  The one problem with Lyme however is it is all over the map.  Symptoms come and go and change which is not consistant with MS. Some people with Lyme gat arthritic pain others neuro problems and some both.

The only way to know if you have lyme disease is to find an honest LLMD and get tested properly.
If anyone wants any information on Lyme disease feel free to email me.  ***@****

Best of luck to everyone,

Lesley

[usedtobenormal]

I appreciate your help.  I will look into LD testing. I am from WI and spend a lot of time camping.
What is an LLMD?

Thank you.

[lat67]

Hi,  Sorry....a LLMD is a lyme literate doctor.  Someone who specializes in lyme disease.   If you go to lymenet.com you can get lots of good info.  Let me know if you need anything else.

Lesley