More MS testing needed or not?

I was told my MRI brain scan shows no indication of MS.  I have not a spine scan nor spinal tap.  My fear is if I do have MS and it is not diagnosed my "condition" will get worse as it has over several years.  Some symptoms are: fatigue, insomnia, neck ache/stiffness, muscle twitching, hands are weak, numbness/tingles in fingers/toes, head feels fuzzy/face fells oddly numb, dropping things, shaky at times, headaches, eyes hurt (very dry at times), focusing my eyes can be difficult, increase in severity of symptoms on hot days, off balance/disorientation/vertigo, falling down due to lost balance, light

[patsy10]

I have most of what you describe except diarrhea and memory problems.  I've had numerous MRI's.... brain, c-spine, thoracic, lumbar.  I've had evoked potentials, spinal tap as well.  All tests have been normal.  I do think you need complete testing including c-spine MRI and evoked potentials.  Sometimes evoked potentials can show lesions that are not present on MRI's.  I don't think you have had enough testing to rule MS out.  I would go right to an MS specialist instead of wasting your time with general neuro's since you don't have a straight forward case of anything( just like me).  My only diagnoses are  fibro and chronic fatigue which I don't believe.  I think we have way too many symptoms for it to be those exclusively.  You also have symptoms of lyme disease.  If you have already been tested and it was negative, keep in mind the testing is very inacurate and difficult.  Best of luck to you in finding and answer.

[mike1105]

LYME?

[loramae]

I feel for you, I too have ALL of your symptoms, had 2 brain MRI's,C,Thorasic,and Lumbar MRIs and no Lesions have been found. I have been to one Neuroligest who said nothing was wrong with me. I'm not going to give up, Its not that we want to have MS we just want to know that we are not CRAZY and what is happening, is happening for a reason.

[Want to feel well!!!]

This is the first day I have been on the MedHelp website, and I am amazed at how many of the comments mirror my experiences and that there are people who can actually understand this medical  "adventure" I have been living through.  All the blood tests I have had to eliminate a long list of diseases (such as Lyme disease, anemia, rheumatoid disease etc.) are negative.

I was just in the ER last week because I could barely walk (my feet and legs felt like lead weights), my hands were not working, and I was vomiting.  The ER doctor was a condescending prig and said to me, "So, you're feeling a little run down?  We'll give you something to make you feel better."  As he walked away I asked what he was prescribing (but I already knew) and with his back to me he said, "An antidepressant."  I told him I wasn't depressed and he said, "Sounds like it to me," as he walked away.
  
I have an appointment with a neurologist in a few weeks, and I had prepared a list of symptoms for that visit.  Before going to the ER, my husband printed out the list to take along, hoping it might help.

The ER doctor did not even examine me (he sent in a medical student).  He did say he read my symptom list, but the best he could do was prescribe an antidepressant?  AND for all of his hard work he will receive payment from my insurance company?  What is wrong with this system??????  

Also, my primary physician had taken me off antidepressants because they did not help.

My fear is that if I do not get the proper diagnosis and on the right treatment there could be unnecessary damage happening to my body.

I had had an MRI in May, and I did speak with a neurologist while I was at the hospital last week, and he was the one who stated that there is no indication of MS, there were no tests that could be performed at the hospital to help with a diagnosis, and that I had to tough it out for the next few weeks until my neurologist appointment, where all the proper tests could be performed.

Through all of this, I am convinced that at some point I will get an answer and that I am not crazy!!!  

This all started the summer of 2001:  I was a healthy, happy, active woman and loved running, weight training, and cycling.  I was in the best shape of my life.  I ran 6 days a week and was also training for a half marathon.  One day I ran seven miles but I felt

[mike1105]

LYME disease often evades diagnosis by testing. I would research the Lyme websites and possibly see a Lyme specialist for an evaluation. Many if not most people with the disease report stories and symptoms similar to yours.

[Want to feel well!!!]

Thank you for your comments.  Any insights are appreciated!  I am new to this sight and I was curious what your background is?

[Want to feel well!!!]

I asked about your background becasue I am trying to get all my duck in a row for my next Dr. visit.

[Want to feel well!!!]

My ability to type is failing me this afternoon!

[mike1105]

i am a retired dentist. Not an MD. I know a bit about Lyme Disease. Many cases are diagnosed based on symptoms only due to the unreliability of testing methods. If I were you I'd go to a Lyme SDisease Web site and read all you can, and in the absence of another SENSIBLE diagnosis that satisfies you I'd see a specialist in the disease. Most MDs are inexperienced with it nd therefore hesitiant to diagnose it never mind actually start treating it without a confirmation from a medically ac cepted test.

[Want to feel well!!!]

Thank you so much for the information.  It is very kind of you to spend time helping others.  I have read so many postings today (my first day on this site and I seem to remember that you have been diagnosed with MS

[patsy10]

Lyme disease was probably ruled out by your doctor using the ELISA test.  The test is something like 40% accurate.  This test is the first screening tool for lyme.  Most physicians know little or nothing about lyme.  They order the ELISA, if it's negative, they tell the pt. they don't have lyme.  If the ELISA is positive then a confirmation test the western blot is ordered.  This too can be negative and a person can still have lyme.  Don't expect much from your neurologist regarding lyme.  He or she will probably tell you that you don't have it since your test was negative and will probably know very little about it anyway.  Depending on what state you live in, the doctors might say "there's no such thing as lyme disease" in your state.  If you live in an endemic area they might know something.  I'm not saying you have lyme but just letting you know so that if they say you don't have it based on a test and they can't find anything else wrong, you have another option to pursue.

[mike1105]

fortunately, i do not have MS--- I had a horrible time with an undiagonsoed condition called Upper Crossed Syndrome which is a postural problem a i got from being a dentist. I do, however, consider myself very well read and agree with the above post. Unless you go to a Lyme specialist, do not rule it out-especially since your symptoms seem to match well. Sometimes, antibiotics are prescribed based on symptoms only. Many people live thru hell before getting diagnosed and then it is too late (google NJ rock n roll legend Bill Chinnock). If your tests keep giving you no direction, seek a LYME specialist.

[sarze8]

Hi. Am brand new to this. Just stumbled onto it looking up symptoms. Ive had some wierd things happening and its scary. It started last fall and seemed mainly symptoms were bad near female cycle. Now it seems to last most of the month.Had MRI without contrast last year of brain and was normal. Tried physical therapy and chiro but its not getting better.My symptoms are severe muscle tightness in back of neck in shoulders and up back of head. This happens with or without pain. sometimes I get headaches but THE WORST is when its tight and I feel very woozy headed tight and my equilibrium is way off.Its so hard to explain sometimes it feels like the nerves up the back of my neck and into my head are irritated but not usually painful kinda like that sensation you get with a toothache withot the pain. I sometimes get a tightness in the facial muscles too. But like I said the worst is the equilibrium part. When it gets bad I just have to lay down. My doc is sending me for a cervical spine MRI and going to do an EEG. I am afraid to do  a brain MRI With contrast because I have such awful reactions to drugs and chemicals. I have to admit I am terrified of the idea of having MS. I do have fibromyalgia and my physical therapist said I may have  a bulging disc in my cervical area. I was looking up bulging discs when I came across this sight. Does anyone out there have any info or advice. Iwould greatly appreciate any info. Thanks a bunch. Sarze8

[Want to feel well!!!]

Thinking back to the day I had my blood drawn for several tests, including the one for Lyme, I do remember the nurses in the drs office calling the lab to ask how to do a Lyme test.  I previously lived in Pennsylvania, spent a lot of time in the woods, so Lyme is a realistic possibility.  I just keep adding to my notes to discuss with the doctor.  If I cannot get any answers with the neurologist, my doctor has already said I will be referred to the Cleveland Clinic.

It's a beautiful day here on Ohio...hope you have the same where you are.  On the cooler days I can get out and enjoy myself a bit!

[patsy10]

I live in Ohio too.  You can go to the Cleveland Clinic if you want to but let me tell you, you will probably be disappointed with your visit.  If your tests don't show anything they will say "it's all in your head" or you will get a fibromyalgia, chronic fatigue diagnosis.  Trust me, been there, done that!!  Since my tests were negative, I was referred to a psychologist and for physical therapy. I have no mental health problems and have exercised all my life.  Of course I didn't do either.  It was ridiculous. If there's a question of lyme, they are the worst.  They know very little about lyme.  They told me "there's no such thing as lyme in Ohio".  I've seen numerous doctors over the past 2 years and my worst experiences so far were at Cleveland Clinic.  I saw an MS specialist there who agreed my symptoms were consistent with chronic lyme.  I brought pictures of all my weird rashes etc.. but when the test came back negative he said it's not lyme.  I don't know if it is or not.  Just be  prepared for this kind of experience.  Also, someone I know saw an ID doctor there with another family member.  She mentioned her lyme disease treatment etc.... and the ID said "there's no lyme in Ohio and I don't treat it".  My bad experiences were not even related to lyme issues. I never even mentioned lyme, my bullseye rashes etc...It would take way too long to tell you the issues I had there.

[patsy10]

One more thought.  If you want to go to CC to find out if you have MS or not then I would go directly to an MS specialist at The Mellen Center.  Don't waste time with general neuro's.  I've been there and done that too.  Not one of them had a clue.

[Want to feel well!!!]

All this started when I lived in Pennsylvania, so if I would happen to have Lyme disease, I got it when I lived there.  

I'll see the neurologist and go from there.

Thanks
  

[mike1105]

again, I would visit a Lyme specialist if you get no answers from the Cleveland Clinic. I personally visited the MAyo In Rochester Minn and have concluded it is the best medical attention I ever received. But again, they are medical doctors, not Lyme specialists, and so you may come up against the same dead end.

[patsy10]

You are well read and give excellent advice/suggestions.

[dizzyinwi]

How does one find a LLMD?  Whenever I even suggest I want to be tested for Lyme, I'm presented with great disapproval.

[patsy10]

Google lyme support groups.  Then click on no. 4.  I will tell you though that this site has been down the past couple of days. So if you can't get on today, try tomorrow or the next day. You can post under "seeking a doctor" and people will help you find someone in your area.  There are no lyme doctors where I live so I have to drive to PA.

[JonM]

I have MS, and what you're describing does not remotely sound like MS.  Sounds more mechanical (Bone/muscle).  Hope you get better soon

[tillytina]

my mother has got ms and had it since she was 46 five years ago i was told i had chronic fatigue i am so tired most days i can only do smalls tasks but recently i have had constant pain in my left leg i am tripping over when i do to much my face gets a numb pain and i get very confused forget directions my mother suffered these same things before we found out about her ms i am worried is it possible i have ms what are the signs of ms the tiredness iget is terrible and comes on so quick i just collapse

[tillytina]

my mother has got ms and had it since she was 46 five years ago i was told i had chronic fatigue i am so tired most days i can only do smalls tasks but recently i have had constant pain in my left leg i am tripping over when i do to much my face gets a numb pain and i get very confused forget directions my mother suffered these same things before we found out about her ms i am worried is it possible i have ms what are the signs of ms the tiredness iget is terrible and comes on so quick i just collapse

[tillytina]

my mother has got ms and had it since she was 46 five years ago i was told i had chronic fatigue i am so tired most days i can only do smalls tasks but recently i have had constant pain in my left leg i am tripping over when i do to much my face gets a numb pain and i get very confused forget directions my mother suffered these same things before we found out about her ms i am worried is it possible i have ms what are the signs of ms the tiredness iget is terrible and comes on so quick i just collapse

[tillytina]

my mother has got ms and had it since she was 46 five years ago i was told i had chronic fatigue i am so tired most days i can only do smalls tasks but recently i have had constant pain in my left leg i am tripping over when i do to much my face gets a numb pain and i get very confused forget directions my mother suffered these same things before we found out about her ms i am worried is it possible i have ms what are the signs of ms the tiredness iget is terrible and comes on so quick i just collapse

[medco]

u have so many symptoms that are non-specific that it sounds like you have an anxiety disorder, not MS. you should try taking another SSRI.

[Want to feel well!!!]

If your post was meant for me, I find it quite inappropriate and condescending.  My primary care physician has no doubt that there is something happening to me (NOT anxiety and NOT depression) and putting an SSRI patch on it is NOT the answer.  I need an appropriate diagnosis so I can receive whatever treatment I need to get well again and feel normal.  

Perhaps your posts need to have a bit more thought put into them.

[medco]

i've read all your posts again and still believe it is anxiety or depression. you've had several tests, yet they've all come back negative. you've listed at least 20 symptoms in your initial post. unless you have multiple disease, which is very unlikely, what you are describing is psychological. i believe the doctor who responds to this message will give you the same answer as me.

in fact, most doctors will tell you this is psychological. if you want to receive another diagnosis, only tell the doctor what you believe is most important - i.e. narrow the symptoms down to the top 5. otherwise, it will be taken as a head case time and again.

best of luck.

[Quixotic1]

I think you seem quite inappropriately full of yourself and out of line for your repeated insistence that this poster's problems are psychological.  Yes, the symptom list is exhausting and long, but you didn't really read it carefully nor did you give it any real thought before your pronounced her a "head case."

Her symptoms group easily  into a few clear categories.  Within those categories she lists different manifestations of the same problem.  A  trained medical professional  reading this list can see that.  Accusing her of having dozens of different symptoms merely demonstrates your  inability to put the pieces into a whole.

1) She has muscle weakness - manifested as weakness, heaviness, shakiness, dropping things, falling down.

2) She has paresthesias - tingling, burning, numbness, skin sensitivity, shock sensations, itching

3) She has dizziness - fuzzy head, balance problems, sensitivity to eye movement, difficulty reading (eye-tracking)

4) She has cognitive difficulties - fuzzy head, memory, multitasking, word recall, confusion

5) She has heat intolerance

6) She has fatigue

She has GI disturbances - possibly from SECONDARY anxiety in a highly trained  athlete whose body no longer functions properly.  Maybe unrelated.  She doesn't know.  I don't know.  YOU don't know.

She also listed many other things not knowing if they added helpful information.  That is not a sign that she is hypervigilant about her health, merely that she is offering information to people who know nothing about her.

BTW - I have EACH and EVERY ONE of those first 6 symptoms and I presented them (in a better categorized form) to my neurologist. They fit neatly and properly into my confirmed diagnosis of Multiple Sclerosis. I also had an initial negative work up.  

It is arrogant to think you can make a solid judgment of pure anxiety from on-line posts.  Is there anxiety evident in her post? Absolutely.  Is that anxiety primary or is it secondary to physical symptoms?  You must be pretty special to think you absolutely know who is a "head case" (I can't believe you used those words on a forum designed to help people!) and who isn't.

You and your ego need a time out.

Quix, MD

[gbboy]

Have they tested you for vitamin defficency? Some not all those symptoms could be from something like a b12 def. Memory, numbness, tiredness, confussion .... I think some of the mineral def. present with odd symptoms also.

[Want to feel well!!!]

Yes, I was tested for B12 deficiency.  But thanks for the suggestion.

[Sherrizim]

Hi,

I am a psychologist and I wanted to say that I detect little anxiety in your posts, and certainly not depression.  The only anxiety I hear is perhaps bewilderment as you try to understand what is happening to your body, and a sense of a need for haste, so that you can get appropriate treatment as soon as possible, to minimize the consequences of whatever disorder you are suffering.  I also hear understandable frustration and indignance, appropriate persistence, and hope that this is going to be figured out and that you are going to feel better someday.

It seems to me that anxiety or depression should possibly only be considered the primary cause of a person's medical problems when exhaustive tests have excluded all possibilities, and even then, it is not necessarily appropriate.  Tests are not 100% accurate or reliable.

Quix has pointed out in other posts that it can help to receive treatment for secondary anxiety or depression, but as I said above, that doesn't seem to be your current situation.

I wish you the best.

S~

[patsy10]

I clearly DO NOT think your problems are psychological in nature.  Quix stated it very well.  (Glad to see you back QUIX.).  I've been going through the same kind of frustration for the past 2 years.  Unfortunately, still no answers.  I also felt a sense of urgency to find out what it is hopefully get some treatment.  I don't feel that sense of urgency anymore.  What will be, will be.  I'm thankful for the good days.  I just live from day to day feeling miserable with no hope in sight.  How do you treat something if you don't know what it is?  It is very stressful to live with an undiagnosed neuro problem.

[Want to feel well!!!]

The support and suggestions you have given to me and all the others is the reason I started to post on these forums.  Reading what all of you are experiencing is so helpful to others and could lead to finding answers or learning to cope with whatever they are facing.  Perhaps I have listed far too many of my symptoms, but it was only to perhaps trigger a response from those who are in similar situations.  I was amazed at the number of people who do.

My major concern over the posts made here by

[medco]

evidently, you don't like being told your problem is psychological, despite the fact that some doctors have already told you that it is. and moreover, several tests have already ruled out your problem as a physical one. my posts simply reflect my opinions. surely, it is not preposterous to presume that your problems are psychological. other than myself, everyone else who posted in this particular thread believes your problem is not psychological - i do not. to say that my post is harmful for disagreeing indicates to me that you are naive.

[Want to feel well!!!]

Whatever your agenda is please take it elsewhere, but be careful what you say and how you say it.

Thanks for your comments.

I hope you find answers to your pchycological/health issues.  

[Jenny Wren]

I have suffered with these same strange feelings for 8 years, it is comments like yours that are ridiculous, do you have any of these symptoms that us people here have.  We deal with this on a daily basis, I think your comments are down right RUDE.  Its not anxiety or depression.  Yes, there is alot of anxiety when all of a sudden one day you start feelings all these weird feelings throughtout your body, then you run to the doctor and spend thousands of dollars on testing, and everything comes back normal.  Medco, there are alot of people like us that find out later that they indeed have MS or Lyme disease, alot of times it doesn't show in the beginning of the disease.  My grandmother suffered with MS for 19 years before she died, it took almost 12 years for it to show on MRIs.  Sometimes testing is inconclusive.  ITS NOT ANXIETY OR DEPRESSION, its real, get a life, and leave us suffer alone without any harsh comments.

[medco]

i am not quite sure what "agenda" you are referring too. i experienced many of the same problems you have, and although it took a while, they all resolved, and what's more, they were all psychological.

furthermore, the giant posting before entering this forum that states...

"All Questions and Comments posted in the patient to patient forums are provided by individual visitors who are  NOT MEDICAL PROFESSIONALS.  Their questions and comments reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in any of MedHelp's Forums."

...will surely protect anyone from "harm."  the but nevertheless, i can see that you are becoming quite defensive and immature, and thus, i will not make any further comments in this thread.

[Want to feel well!!!]

If you or your medical professionals were able to discern that your specific problems were psychological, I am glad for you.  You found an answer.  That does not mean that your particular resolve belongs to everyone else.  Perhaps you are the one who needs a boost in maturity.  If you initially came here for help, I hope you found it.  In the mean while these posts are nonproductive.  As I said before, take you agenda elsewhere.  If you do not know what that means, look it up!!!!

I wish you well.  I too am done with this exchange.
  

[Sherrizim]

Hi medco,

I'm taking the chance that you'll actually read this.  I read a couple of your past posts in the Neurology/Neurosurgery Doctor Forum archives, and it seems to me that your history is entirely different than Want to feel better!!!  Besides your history of epilepsy, you mentioned a significant history of anxiety.  That has not been the history of Want to feel better!!!  Just because your symptoms were psychological does not mean that hers are.  I'm glad that psychological treatment provided you with symptom relief, but that is not the answer for everyone.

The frustration and indignation of being told by doctors that a problem is psychological is completely understandable when they have too quickly dismissed the symptoms as such, rather than taking the patient's complaints seriously and conducting appropriate tests.

This forum is supposed to be supportive, and although you were just stating your opinion, it seems to me that it just "added injury to insult."

S~

[Want to feel well!!!]

Okay, I am not completely done with this ridiculously long and exasperating forum

[TrueHealthTony]

Here is some SpecificRecommendations from my Doctor friend. I do not have MS but I have met several lady's with MS who use this Specific  Regimen adn it has changed their lives tremendously. My wife and I follow this sort of Regimen for our daily lives to help us PREVENT from getting a ChronicDegenerative Disease.
-------------------------------------------------------------------------------------------------

Multiple sclerosis (MS) affects about 250,000 Americans and is about twice as common in women as in men. This disorder affects the myelin sheath (insulation around the nerve). The breakdown of the myelin, called demyelination, results in impairment of the function of the nerve with presenting clinical symptoms of multiple sclerosis.

Dr. LeVine first proposed a hypothesis in 1992 that multiple sclerosis was caused by the hydroxyl free radical found in excess within the myelin sheath. Other investigators have further documented that oxidative stress is very high during active progression of multiple sclerosis when compared to those individuals whose multiple sclerosis is in remission or when compared with normal controls. Several other studies have demonstrated strong evidence that the underlying cause of multiple sclerosis is oxidative stress.

There have not been many clinical trials using antioxidants in patients with multiple sclerosis. However, because of the growing evidence of the involvement of oxidative stress in this disease, there will surely be future clinical trials using antioxidants in these patients.

Multiple sclerosis is an autoimmune disease. This means that the body is essentially attacking itself. One's own immune system attacks the myelin sheath around the nerve and causes an inflammatory response. It is actually the oxidative stress caused by this reaction that is damaging the myelin sheath. The clinical course of MS is definitely varied. Some of my patients progress rapidly and are wheelchair bound or bed bound within a few short years. Other patients actually have a fairly normal life and will go years before they have any kind of a set back.

Why is this disease so varied? The most logical explanation is that some individuals have a stronger immune system and more potent antioxidant defense system than others. This is why I strongly recommend that my MS patients begin a very aggressive nutritional supplement program as soon as they have had the diagnosis of MS. I feel this gives the patient the best chance of having a more benign course of their disease.

I was taught in medical school that autoimmune diseases were the result of an overactive immune system since the body was essentially attacking itself. Consistent with my training, almost all of the medical therapies that physicians offer patients with an autoimmune disease are based on this premise. This is why most of these patients are placed on chemotherapeutic medications, which primarily suppress the immune system. Medications like Methotrexate, Plaquinil, and Immuran are just a few of the potent medications that are used. Corticosteroids like Prednisone are also used not only because of its strong anti-inflammatory qualities but also because they suppress the immune system. However, in MS these medications have not shown much success.

Since specializing in Nutritional Medicine, I have seen amazing results in my patients with autoimmune diseases who are using an aggressive nutritional supplementation program. My only explanation for such unbelievable results in my patients is the fact that they are not dealing with an overactive immune system, but rather a confused immune system.

The immune system is intended to be our reliable protector. It is always checking for self (one's own body) while it is looking for non-self (any foreign substance or abnormal cell). When the immune system finds a virus, bacteria, or foreign body it destroys and eliminates it from the body. However, in autoimmune diseases the immune system actually attacks itself rather than a foreign substance. If it attacks the joint space, a person is diagnosed as having rheumatoid arthritis. If it attacks the bowels, it manifests as Crohn's disease or ulcerative colitis. When the connective tissue is attacked, a person might end up with scleroderma or lupus. If the myelin sheath around the nerve is the target, multiple sclerosis (MS) ensues.

In the case of autoimmune diseases, I believe one's immune system is not able to distinguish self from non-self. Being confused, the body is essentially destroying itself. Along with the traditional treatments, I recommend my patients with MS begin an aggressive nutritional supplement program. In doing so, I am not only building up their NATURAL antioxidant defense systems, but also I am building up their own NATURAL immune system. I find this helps my patients on both sides of the disease.

I believe their immune system becomes less confused and begins to recognize "self" again. This means the immune system more readily identifies outside invaders--not attacking "self" as much. In addition, my patients' antioxidant defense system is also built up to balance out the tremendous number of free radicals being produced. This brings the root cause of the damage--oxidative stress--back under control. Therefore, it is absolutely critical that I place my patients on the most potent antioxidant combination available.

Am I promoting alternative medicine? Absolutely not. I never take my patients off of their medications until they've experienced significant improvement. Nutritional supplementation is always used in tandem with their present medical regimen. They not only tolerate their medications better, but I believe the nutritional supplements actually enhance the pharmaceutical effect of the drugs.

My goal is to have patients improve so much that their neurologist or primary care physician is able to decrease or eliminate some or all of their medications. I can't emphasize this enough. No one should stop taking the medications that have been prescribed to him or her by the specialist. Almost all physicians desire to get their patients off of these potent and potentially dangerous medications. However, this decision must involve the personal physician.

I find it interesting that the most recent three or four medications being used to treat MS actually build up the immune system rather that suppressing it. Medications like Avonex, Beta Serone, Copaxone, and immunoglobulins all build up the immune system. Still they are not only very costly, but have detrimental side effects. Many of my patients are not able to take these medications. High quality nutritional supplementation accomplishes the same goal. It is building up our immune system, while at the same time building up our antioxidant defense system. My patients also tolerate these supplements with no long-term problems. This supplementation program can be used in patients taking any of these drugs.

In my practice and with multiple sclerosis patients, I am seeing amazing results. Several patients are not only maintaining their present level of function, but several patients are also gaining strength and function. Though not all of my patients have responded to this aggressive nutritional program, the earlier in the course of the disease they start, the better the chance of a favorable response. ly life and so does my wife. To help us PREVENT getting a  Chronic Degenerative desease. I hope this helps you. You may contact me at my webstie for further information if youMinimal support for Cellular Nutrition:

My minimal recommendation for creating cellular nutrition is to simply take an Antioxidant Tablet and Mineral Tablet that contains as close to the recommended nutrients you can see by clicking on each particular nutrient or tablet. Several nutritional companies are now combining most of these nutrients into one or two different tablets, which makes it much more convenient to get the cellular nutrition that I recommend. The Antioxidant and Mineral Tablets need to offer the cell ALL of the antioxidants, B cofactors, and antioxidant minerals needed by the cell at ideal levels. In order to achieve the best results, in general I recommend taking 2 Antioxidant Tablets and 2 Mineral Tablets in the AM with breakfast and in the PM with your evening meal. Now the exact amount may vary with the particular nutritional company you choose; however, nutritionals should always be taken with food because of better absorption and better tolerance.

Optimal support for Cellular Nutrition:

For the most favorable results for basic cellular nutrition, I also recommend adding to the Antioxidant Tablet and Mineral Tablet some additional Calcium/Magnesium Tablets and essential fats. You are able to get additional essential fatty acids from high-quality Flax Seed Oil or pharmaceutical-grade, filtered Fish Oil Capsules. These recommendations provide all the nutrients at their ideal levels creating the cellular nutrition I recommend in my book, What Your Doctor Doesn

[shaggy29]

is it just me, or are there entire threads within the neurology forum disappearing?

[Manysymptons]

Please let me know what the two of you find out in the future.  I too have had all the tests done that you have mentioned, mri's, cat scans, ncv, emg, mra, spine mri, etc., the list goes on... I have the tingling, the numbling, the fuzzy head feeling, the shakes, faces feels odd, twitching, etc.  I recently went for the dreaded Lumbar Punch and will get my results this week.  But I am always looking for any advice/answers for people with similar symptoms.  Hope you are doing better soon.....

  

[Want to feel well!!!]

Next Monday is my first visit with the neurologist so I

[Want to feel well!!!]

Thank you for the information.  I would like to look into this further.  And, it doesn't seem to be a difficult thing to do.  Thanks again!

[Want to feel well!!!]

In the post you entered above you sound like you have given up trying to find an answer.  What happened when you went to the Cleveland Clinic?
And how is this heat working for you today???  

[PlateletGal]

You should do your research on both fibromyalgia, CFS and lyme disease. These illnesses are real and if you read about them, you will know basically what causes them (except the immune dysfunction part).

Co-cure.org and many other websites keep people up to date on the facts.

Read what the CDC says on CFS. Remember there have been thousands of studies and physical abnormalities in CFS patients':

http://www.cdc.gov/cfs/pdf/Basic_Overview.pdf

[patsy10]

This is what happened.  I'll try to make it brief.  The local neuro said he "didn't have a clue" what was wrong with me but thought it was related to the neck surgery I had recently had.  I went to the spine center at CC.  The doctor there was very nice but said no way was it from my spine surgery.  He couldn't believe how hyperreflexic I was.  He said no way was it fibro as too much was going on.  He insinuated it was MS. He sent me to a general neuro.   The neuro was very rude.  He got 3 personal phone calls while I was there.  One was 10 minutes long. He insulted my place of employment(I work at another healthcare facility).  He said "how do you feel about us taking your business away".  He told me I had fibro without checking for the tender points, which are absolute diagnostic criteria for fibro.  He sent me to the rheumy.  The rheumy diagnosed me with fibro as well, again, without checking for the tender points.  He made several comments on how incompetent neurologist are. Months later, after I had seen my local neuro, I developed entire left sided numbness, weakness.  I had a spinal tap which was negative.  I went to the MS center at CC for another opinion.  The doctors did spend a lot of time with me but seemed more concerned about how "poorly I was coping" with whatever it was.  They said it was not MS but that they didn't know what it was.  I read my chart later and they wrote chronic fatigue, fibromyalgia and somatisation disorder as my diagnoses.  In other words, "it's all in your head".  I was furious.  Obviously, I wasn't taken seriously.  If I had any abnormal MRI's etc... it would have been different.  But, lots of symptoms with normal tests="it's all in your head" to a large number of doctors.  I even had problems with the billing dept.  Except for the first doctor I saw, my experiences were very disappointing.  As far as the heat goes,  my feet are much more tingly and it makes me tired but all in all it doesn't cause any huge changes in my symptoms.  I have constant numbness, tingling, twitching, stiffness, weakness.  

[patsy10]

If I ever find out for sure what I have, I'll post it in big, bold print!!!  Please do the same if you ever find out.  I'm still  leaning toward lyme.

Patsy

[PlateletGal]

Isn't it frustrating ? The symptoms of CFS & Fibro are almost identical to lyme disease and the lyme disease tests are often false negatives !

[patsy10]

Hi Plateletgal,

Yes I agree.  It's even more frustrating when the medical community doesn't believe you.  I recently  started taking Samento.  It's supposed to be good for any of the ambiguous diagnoses like lyme, CFS, FMS.

[PlateletGal]

The problem with some of these physicians', is that they think they know everything when they graduate from medical school. I remember Dr. OZ being on The Oprah Winfrey Show and saying how he felt that way after he got his medical degree. And now he says he loves the field because there is so much that they do not know. He said if people have symptoms you can either do the research and do everything to find a cause or just say that they are crazy. I think the latter one is easy for lazy physicians'. Well obviously... one would THINK that if your patient was crazy, then you would at least diagnose and treat him or her.  = )  

[Manysymptons]

Samento?

[Manysymptons]

I am sorry, just now saw your question re the LP.  I have to say, I dreaded the LP for weeks.  I heard horror stories about them.  But like the saying goes, the only people that usually post are the ones that have stories to tell.  Most people that have good LP's don't take the time to go back and post.  The procedure itself isnt that bad, its the anticipation.  If you have a good neuro doing it, you should be in good shape.  You feel the ***** at the beginning to numb the area, but after that, its not that bad.  The neuro talked to me the whole time so that helped calm me.  He knew I was nervous.  He even made fun of me and said it was no worse than giving blood.  If you have to get one, just make sure you follow the rules of PLENTY PLENTY PLENTY of liquids and lay down flat for as long as you can.  I think some people automatically get the headache and some don't.  Unfortunately I did.  It was a bad one, and I get migraines.  Luckily I was able to drink and lay flat long enough and not have to go back and get the blood patch.  I was back to normal in six days.  Some people feel fine hours after the procedure. HA!  Me, not so lucky.  But, the procedure itself isnt the bad part, its IF you get the headache.  And from what I hear, most people don't.  I get my results on Thursday.  Anticipation and nerves will just about kill you.  I know you don't know me, but keep your fingers crossed for me, ok?  :)          

[Want to feel well!!!]

Thanks so much for the information.  AND good luck on Thusday!  Let us know!

[patsy10]

Samento is an herb.  It's derived from the herb Cat's claw.  It's supposed to be good for lyme, viruses and lots of other things. What do I have to lose?  It's worth a try.  Have you heard of the Vanderbilt protocol?  My doctor recommended it to me today.

[Want to feel well!!!]

Just passing on some information.

There is also a treatment called the Marshall Protocol.  An acquaintance of mine is currently trying it for her Sarcoidosis.  She researched it, took the information to her doctor, and she said she tells the doctor what to prescribe.  She suggested it for me but I explained that I don

[Want to feel well!!!]

Does anyone know why a doctor has not replied to most of the questions in this "Doctor to Patient" Neurology forum?  The questions seem to absent of a doctor's input.  I could find only one doctor response to a question on 5/28.  

Are we deing ignored???? LOL

[patsy10]

Here's my thought about the questions being answered.  The doctor sees pt's during the day and is probably very busy.  I think they answer the questions when they have time.  I could be wrong but I believe the questions are answered by the senior fellow as this is a teaching hospital.  I noticed the answering doctor changed in July last year from Dr. PW to Dr. SH.  This is the same time of year when the new residents and fellows come in.  So they may be in transition at this time.  We'll know when they start answering again.  Dr. SH was very intelligent and I have been very impressed by his or her answers.  Plateletgal knows a lot about the Marshall protocol.  She's posted about it before.  She'll probably come along and tell you more.  My doctor recommended the Vanderbilt protocol yesterday.  It may be similar.  I have to read up on it yet.  They both use antibiotics and treat undiagnosed infections like lyme.

[Want to feel well!!!]

At this point a doctor

[PlateletGal]

I am currently on the MP and have been for over a year. Since I began the MP in April 2006, my family members' have told me that I look better (dark circles under eyes). In addition, I can now tolerate gluten and eat anything with wheat in it.

The protocol is a little rough because you have to avoid vitamin D, stay out of the sun, wear special sunglasses and because of the herxing symptoms. The reason why you have herxing symptoms is because those of us on the protocol have vitamin D dysregulation --- that means you have bacteria in your body. When you are taking the antbiotics, it is killing the bacteria that is making you so ill --- so you get additional symptoms --- very similiar to detoxing.

You can request to have one of the moderator's send you a private message (you'll get a free account on the board if you join), they will e-mail you a list of MP physicians' in your area. I know there is so much information on the website and the majority of it is not written in layman's terms (I wish they would change that).  But I do believe this protocol was the right decision for me and in my opinion.... safer than other protocols that use antibiotics only. I recently took a break from the protocol and noticed a significant change in my health from when I first began the protocol. I was stronger and had more energy. The only problem with this protocol is that it takes so long and especially for those of us who have CFIDS. It can take 1-3 years. I see it this way --- I didn't get sick overnight and I won't get well overnight either.

You may want to search for "Marshall Protocol" + "Hypervitaminosis-D is characterized by" --- you'll see many of your symptoms that the MP treats. You can also search for Amy Proal's interview about the Marshall Protocol online.

If you joined the MP website, feel free to send me a private message. My nic is the same nic I have here.

[Want to feel well!!!]

Thanks for the info.  I might take a look at the MP next week.  My brain is too foggy right now so I wouldn't be able to comprehend the information.  I do have my neurologist visit Monday and I'll see how that goes.  

I'm glad you are finding some relief with the MP.  If you don't want to answer I'll understand, but does your insurance cover the Rx?

Again, thank you.  

[PlateletGal]

I know what you mean about the brain fog ! Been there --- done that and unfortunately, still doing it.  ; ^ )

The MP is a research protocol but guess what ? The medications are not research medications. My insurance is covering everything.

Best of luck to you --- whatever you choose to do. I seriously do believe that your illness falls in the lyme, CFS, MCS and/or lyme disease category.

[PlateletGal]

Speaking of brain fog.... I meant to write FIBRO, CFS, MCS and/or lyme disease category.

You see... I never used to do this before. Brain fog and these conditions are very real !

[Quixotic1]

Hi, you and I have never talked.  What is MCS?   I also do not think MS has adequately ruled out.  Quix

[PlateletGal]

Hi Quix,

MCS stands for multiple chemical sensitivity.

[patsy10]

I also feel MS has not been adequately ruled out.  I posted that way at the beginning of this thread.  I agree with you.  If I remember, I think a brain MRI was the only test performed.  Hopefully, Want to feel well!! has a good neuro appt.

[PlateletGal]

To diagnose MS, neurologists do the MRI and/or a spinal tap on the patient. The problem is though that some CFS patient' were misdiagnosed as having MS, because many CFS patients' also have abnormal MRI's. In addition, MS patients' have low uric acid levels --- but then again, so do CFS patients'.

It didn't surprise me when I heard the CDC announce that CFS can be as disabling as MS. MS and CFS do share many characteristics and are sometimes mistaken for each other and if I remember right.... we both have the same bacteria in our tissues & cells. (mycoplasma)

If you truly want a diagnosis --- there is a national lab that can test you for CFS and FIBRO, but like MS, the test requires spinal fluid. The lab test is currently a research lab test, but I think I read recently that Medicare will pay for the test. I'm sure insurance companies will not cover this test at this time. The name of this lab is RED LABS, USA... they have a website if you are interested.

[PlateletGal]

"An alarming number of CFS patients are misdiagnosed with multiple sclerois (MS). The severity and symptoms of chronic fatigue syndrome (CFS) fluctuate and sometimes mimic the relapses and remissions of MS. In addition, when health care practitioners suspect a patient has MS, they almost always refer the patient to a neurologist, who then sends them for magnetic resonance imaging (MRI) testing. Today, unusual cerebral white matter on MRI tests often automatically leads to the diagnosis of MS."

"In a review of 366 patients referred to me who had been diagnosed with MS by a board-certified neurologist, only 236 patients (65%) had been correctly diagnosed. An astounding 28 (22%) actually had CFS."

Dr. Charles M. Poser, MD, FRCP (GLE)
Visiting Professor of Neurology,
Harvard Medical School

(posted on the CFIDS Association of America website)

[Want to feel well!!!]

My thoughts are with you for tomorrow!!!  Hopefully you'll have answers and solutions.  Best wishes...

[patsy10]

I looked at that website.  If I ever have another spinal tap I want that run.  I'll pay for it myself if I have to.  I have been diagnosed with both CFS and FMS and I do have a multitude of MS symptoms so maybe is the CFS part causing all the numbness, tingliing, twitching etc?????

[PlateletGal]

Twitching, numbness & tingling can all go along with fibro. I have CFS and in the last couple of years have also had some tingling and numbness. I guess it makes sense knowing that CFS affects your nervous system... also the endocrine system and immune system. Not to mention those CFS patients', including myself, who have orthostatic intolerance/BP issues.

[Manysymptons]

Went to the neuro yesterday.  The LP results came back GOOD   :)

[Want to feel well!!!]

That's good!  Now what direction will you persue?

[Manysymptons]

Well, after the good news on the lp, we kind of went back and forth, I want a referral to mayo, and they seem to think I am crazy to want one, or egos are upset that I want to move on from them.  They gave me some muscles relaxers to take daily, which are impossible since I have to work for a living, and upped my magox and topamax intake.  Went this morning to recheck my b-12 count, and they are scheduling another mri.  I was so frustrated, I started crying, which then of course lead straight to the "you must be stressed out" conversaton, lets put you on stress medication.  I am stressed out because I always feel bad!

[Want to feel well!!!]

Arrggghhh!!!  Of course you would cry!  Your body feels awful and when you try to find a real answer they tell you to take this little pill that will take all your cares away!!!

I'm sorry, but as soon as you said you started crying I knew what their next response would be.  This seemingly routine answer is soooo demeaning!!!  What did they do before SSRI

[Manysymptons]

I am going to go ahead with the MRI, and during that time, I am collecting all my records that I don't already have.  From my neurologist, ent, gastro, general, chiropractor, anyone I have seen.  I don't want to go in there and repeat all these tests if I don't have to.  Especially the LP.  I want to go in with as much information as I can.  The neuro did say that even if they write my referral it could be a long time before I get in.  So we shall see.  

Where do you stand as of now?

Big hug to you as well.  I know the feeling of wanting to feel well.....    

[Want to feel well!!!]

Hopefully it will not take that long to get into the Mayo!  They sure tried to lift your spirit.  Why does all this negativity have to go hand in hand with medicine?  One of my favorite movies is "Patch Adams."  I think more doctors need to learn from him.  Becasue of that movie, a few years ago I started carrying around a clown nose to use as needed.  My husband is mortified when I whip out my nose out in public.  It is really a lot of fun to wear it at a drive though window.  Some people will ignore it, others laugh.  We all need to laugh more!  I had considered putting the nose on at the neurologist's office, but my husband made me promise I would not.  

I'm just waiting for Monday when I see the neurologist for the first time.  I had posted somewhere that I found out he was one of the best, and an MS specialist...heard from a patient of the neuro group I am going to.  That put me at ease.  

  

[Manysymptons]

The clown nose made me laugh.  Good luck on Monday.  Let us know how it goes.  :)

[MedicGirl]

I am new here. I was told several day's ago that I prob. had MS. I had a LP done after my vision suddenly became blurry overnight. I had a vision exam last week, my doc said I didn't need new glasses. She sent me to the e.r. The e.r. doc said my cfs protein was really high. The ct scan was clear, but he said I need an MRI. He referred me to a neuro, which I see next week.
      I don't know what to think. I am a paramedic and have been for over ten years. I need my vision to be perfect, now I can't even see clear enough to paint my nails. It's scarey to even try to imagine myself trying to start an IV or give a patient meds. The vision loss happened overnight. I have RLS, fatigue, ( which I assumed was due to my job), and a few other s/s. My family thinks the doc is wrong. I know the medical aspects of MS, but I don't know anyone who has the disease. I never knew how it felt for my patients to be told that they had a disease that would change their lives forever, until now. I am still "in shock". ( I knew something was wrong, but I never expected this) I only wish I could go back and hug every paitent I treated......

[Want to feel well!!!]

First of all, I am sorry you are feeling so bad.  It sounds like this was thrown on your plate rather abruptly.  Or has this been something going on for awhile?  Was it your GP who told you that it might be MS?  Unless you have a definite answer, don

[JonM]

I have definite MS.  I was diagnosed definite before all the tests were performed.  One thing you may not understand fully is that there is no definitive test for MS and that most all MDs will wait for repeated events/symptoms that are seperated in time from one another.  Since both of you list so many general complaints the key for diagnosis is going to be time, duration and remission.  MS is diagnosed this way.  You both should keep detailed logs of your symptoms, including when they start and when they end, and categorize them from Mild to Severe.  The tests are used more for ruling out other conditions than they are used in diagnosing MS.  Punch in the McDonald criteria into Google, this is pretty reliable and commonly used to diagnose the disease.

As far as anxiety and depression and MS.  Many MS sufferers suffer this too.  Not necessarily for the reasons you think.  MS is a disease of the brain.  It damages the brain.  Sufferers can become depressed because of the damage.  Also, treatment for MS, primarily interferons add to depression.  So don't get all worked up if the Neurologists puts you on an anti-depressant, its fairly common for MS.

[patsy10]

Thanks for the info.  If it's MS then it's the worst kind.  I don't have relapses and remissions.  I have constant, daily symptoms that never go away, change from hour to hour, day to day.  I've seen 5 neurologists and an MS specialist.  Not one of them thinks it's MS.  In fact, the last two did not even have it on their differential.  I've been convinced that's what it is but not one test has shown anything.  I've had 3 MRI's of the brain, 3 of the cervical spine.  MRI of entire thoracic and lumbar spine, evoked potentials, 2 EMG's and a spinal tap.  Every test was normal.  I just don't know what to think.

Patsy

[Want to feel well!!!]

I think you may have misinterpreted the argument on antidepressants.  I understand that many people diagnosed with MS take antidepressants, however I find it quite apathetic on the part of many physicians who prescribe antidepressants even before any type of diagnosis is made or testing has been performed.  As it has been stated in these forums, a psychological diagnosis should not be considered until all other possibilities have been ruled out.

Have you posted in the MS forum?  Your experience and suggestions could be useful over there as well.  Hop on over if you

[Blue727]

Want to feel well!!!  Any updates on your prognosis?  I really feel for you and can completely understand.  Up until tomorrow, I have never had an MRI, but they were very easily satisfied with telling me it was depression and anxiety.  You would think after all the medicines I was on (listed below) something would have helped if that were the case.  The doctor told me today she believes it's MS.  So far that means I have been told it sounds like thyroid (as you can see by the results below it's borderline low), lyme disease, toxin problems or sinus problems.  I have a deviated septum and a polyp, but I'm sure fixing those won't change much.  Please let me know what you think of my post.

I'm really not sure where to go from here, but I'm hoping someone out there can help me out! After seeing the previous posts in this forum, I thought I would share and maybe we could compare notes and come up with something. Here is my long pathetic story, please forgive me.

I'm a 27 year old male. About the year 2003, I went out drinking one night, woke up the next morning and thought I could have done something really bad (not sure what, but my mind just ran). This was very debilitating and made it so I missed some work. I actually believed I could have done this stuff. However, after worrying about it for a couple of weeks, my life went back to normal. I went to the doctor and was placed on one anti-depressant/anti-anxiety pill after another.

I realized during this time that when I drank, I would worry and think the worst case scenario. It was like I was halucinating for days after consuming alcohol.

Since 2002, I had two daughters, grandma died, got engaged, got divorced, bought a house, had to sell the house after divorce, my ex got engaged two months later and married less than one year later, my parent's got divorced after 27 years of marriage, my daughter was born emergency c-section and hospitalized with pneumonia. During this time I had a job I completely hated. I literally felt like the world was on my shoulder's.

Since 2003 I was on the following medications with little to no help (not on all at the same time, almost one right after the other);

Xanax
Paxil
Cymbalta
Buspirone
Clomipramine (had to go to E.R. on this stuff after one dose)
Clonazepan
Mirtazipine
Zoloft
Zyprexa
Seroquel
Prozac
Celexa
Toprol XL
Welbutrin
Lexapro
Risperdal

In October 2005 they did a TSH test which was 1.74, two months later .94, then 1.20 (range .35 - 4.82. I had a full check up with the following being in the high range; iron/serum, Triglycerides/serum, absolute eosinophils and a low Urea Nitrogen/serum. My other tests; Free T4 was .91 (range .59 - 1.17), T-4 Total 6.4 (range 4.5 - 12.0), T-3 Uptake 34.6 (range 25.0 - 35.0), Free Thyroxine Index 2.21 (range 1.12 - 4.20). My absolute eosinophils was at 608 in 05' and in 06' was at 901 (range 0 - 500) which they say was do to hay fever although I have an allergy shot at least once per year.

In April of 2006 I was scheduled to have my gall bladder taken out, however; they put me under and stopped the surgery on two separate occasions as my carbon dioxide levels were way too high. I was sent to a cardiologist who said everything was fine and okayed the surgery. They went through with the surgery.

My latest tests are (although I have no idea what half of them mean);

I have been tested for everything under the sun from thyroid to CT scans. I was diagnosed with sinusitus and was prescribed Avelox 400 mg per day and Ru-Tuss twice daily with no help what so ever. The one that sticks out the most is the Homocysteine level....pretty darn high.

My results and ranges;

% Saturation 55 Range 20-55
Homocysteine, NUTR/Congen 45.8 Range 5.4-11.9 umoL/L
Cortisol Binding Globulin 31 mg/L Range 19-45
Methylmalonic acid, Serum 229 Range 87-318 nmol/L
Sex Hormone Binding Globulin 26 Range 7-44 nmol/L
T3, Reverse 0.19 Range 0.11-0.32 ng/mL
Renin, Plasma activity 1.9 ng/mL/hr
T-3, Free 377 Range 230-420 PG/DL
TBG 14.6 Range 12.7-25.1 mcg/mL
Iron, Serum 179 Range 45-175 MCG/DL
Ferritin, Serum 227 Range 20-345 NG/ML
Folate, Serum 3.4 NG/ML
Vitamin B12, Serum 253 Range 200-1100 PG/ML
Free T4 0.73 Range 0.71-1.85 NG/DL
TSH 1.39 Range 0.50-5.00 uIU/mL

I have now been placed on B12 injections and take 5,000 mcg of B12 sublingual daily when not taking injections, Vitamin D3 (cholecalciferol) 5,000 IU per day, 4 caps per day of B Stress Formula to give 200 mg of B6 and 800 mcg of Folate, 4 caps of Omega-3 fatty acids, 1-4 caps of Taurine. I also currently take 20 mg of Prilosec for Acid Reflux disease and 10 mg of Ambien to sleep. My physician wants to start me on Cytomel for thyroid and Cortisol.

In the past I have had gall bladder surgery, double hernia, throat dialations, numerous concussions and lymph nodes biopsyed.

I have so many symptoms it's not even funny.

My typical day;

I wake up exhausted, but feel better after waking. It always seems one eye is bigger than the other. I have actually had people comment in a well lit gym that I looked drunk or something, as my pupils were so dialated. However, I have seen to eye doctors and both say they look perfectly normal. Throughout the day I sweat like a pig and feel very heavy (even when only doing minimal things). I feel very stiff in my movements, off balance, feel like everyone is watching me, because I feel so off. My eyes feel like I am squinting half the time and after this they feel like they are going to pop out of my head, as it feels like so much pressure behind my eyes. When I turn my head in either direction my movements feel choppy. Like I'm in slow motion...this gets my nervous system going in overdrive. I get the same feeling when I focus on something like the computer screen, but when I read, my eyes feel like they are jumpy, moving constantly. I get very nervous, parnoid (not that the CIA is coming or anything like that). I feel so slow and almost like I am staring. My movements feel so off. When I go into a store I feel so nervous. My body feels like it's going one way while my mind is going the other. I get tingly sensations in my hands and feet after a very short period of time. I feel like I can't hear very well anymore and everytime I talk to someone they have a tough time hearing me. It's almost as if I don't recognize or know the strength of my own voice anymore. My ears feel clogged up and pop constantly (like when you have a drive through the mountains). My throat has that need to be cleared feeling (although there is nothing to clear). By the end of the day I am so tired and wore out mentally. I literally don't feel comfortable leaving my house anymore. I have that impending doom, everything is so overwhelming feeling. My ears pop and hurt all the time and off and on it causes me to feel like I have a sore throat. I have basically quit doing things with family and friends. I would love to more than anything, but I feel so strange around all them. I could just cry half the time, as I don't know what to do from here.

Whatever this is, I feel it stems from the way my eyes feel. They feel like if you were to keep your eyes crossed for awhile, plus the feeling of popping out of my head. When I try to take a nap during the day, my body literally shakes, I sometimes hear a loud popping noise that wakes me up, I feel like I become numb and although it feels like I slept for hours, it's been minutes.

When these feelings are at there worst during the day, I almost feel like the left side of my body is not functioning properly. It feels like I am dragging my foot and my arm feels uncordinated. Basically I feel like I have a slow onset of mental retardation. I am more irratible, my anxiety is bad, I zone out quite often and my depression has become bad, but I feel like all this is stemming from something else.

The problem I have is that nobody notices this stuff but me...any ideas on that?

Any ideas, comments, suggestions, related experiences?

[Want to feel well!!!]

Hi.  You seem to be having a lot of difficulties.  I really don't know what to say.  Your symptoms are different from what I have been experiencing.  I've been hanging out in the MS forum, as so many of us have MS like symptoms but no diagnosis.  

Have you been to a neurologist?  

[callingdrhouse]

Six years ago I began with intense pain in my jaw. It then crept up the side of my face and the left side of my head. I went to my chiropractor thinking something was out of whack. Three days later, along with half a bottle of pain killers, as if something snapped, everything from my shoulder to the top of the left side of my head went numb.

I went to my family physician who said it was a pinched nerve and gave me antinflamatory meds. That was until the following day when I called him to say the numbness have progress down the entire left side of my body. I could only drag my foot. He sent me to a Nuerosurgeon immediately and I had a lumbar puncture and MRI. After that I was sent to a neurologist who reviewed the results, (which included 2 lesions on the cervical spine, borderline MS bands and white blood cells in the spinal fluid) examined me, told me I had MS, put me on Copaxon and steroids and that was that.

Within three months I was as good as new, on a trip to Hawaii, hiking 6 miles across a volcano. No symtoms (symptoms) what so ever. In fact, as it turned out for the next three years, all my MRIs came out normal without any trace of the original lesions - no flare ups, although I did have fatigue, some minor nerve damage, increasing bladder problems, heat and cold intolerance, cognitive problems, tingling, and occasional balance issues. Otherwise my exams were normal. I finally questioned the doctor about "dosen't multiple mean multiple?" He abuptly told me if I questioned his diagnosis I could find myself another doctor. I did.

New MRI from base of spine to top of head showed no signs of MS and physical exam was normal. Yet, symptoms were still there. I too was told it could be fibermyalgia (fibromyalgia).I was removed from Copaxon.

Then last year I began developing serious memory problems. I would get lost in my own town. I even forgot we had a shopping center five minutes from home. My nuerologist did another MRI. He found several small lesions in the white matter of the frontal lobe of my brain. A few months later a larger lesion appeared on my parietal lobe. The only thing is my spinal tap was highly questionable for MS. Also, in MRIs lesions should enhance with contrast. My do not. My neurological exams are still normal.

His take on this is my first attack was transverse mylytis caused by bacteria. Now, due to some unknown autoimmune disease (which I'm currently being tested for) which is causing kidney disease I have developed white matter disease. I would still be taking Copaxon to be on the safe side but I've deveoped an allergy to it. But, knock on wood, so far I have remained stable other than the fact my memory and balance are the pits.