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.

[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]

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

[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

[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]

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

[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_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.

[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, "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.

[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.

[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.

[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

[JCmcc]

Dear:

[JCmcc]

Further Information:

DEFINITIONS OF SYMPTOMS PERTAINING TO LYME DISEASE (General Symptoms)
Check clear circle

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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[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.