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Neurology (Expert Forum)
More MS testing needed or not?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
More MS testing needed or not?
by Want to feel well!!!, Jul 04, 2007 12:00AM
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 “shock” feelings radiate throughout my body, sensitive to sounds…very “jumpy,” diarrhea, vomiting, short-term memory problems, constant forgetfulness, hard to recall words, reading can be difficult, on 2 occasions my right hand was shaking uncontrollably…each time for only about 30 seconds, itchy feelings/cannot be soothed by scratching, choke on my own spit at times. I have had blood tests to rule out numerous illnesses. I am scheduled to see a neurologist in a few weeks, but one neurologist told me there is no reason to do a spine scan or tap. I am a happy person, I used to be a runner but I running became too difficult 4 years ago. I love to cycle, but this year I have not been able to ride. I'm not crazy nor am I a hypochondriac; I simply want to feel better!!!! Any advice would be greatly appreciated. Thank you.
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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 “off” and it was oddly difficult for me. The next day I was feeling overwhelmed with exhaustion and as it turned out, I never ran again. After a few weeks of total exhaustion, I went to my doctor’s office and a Physician’s Assistant put me on an antidepressant, stating that women my age have a lot of changes happening in their bodies and this was “normal.”
Since then I have been experiencing symptoms on and off, each time they seem to worse, but this past spring thru the current date has been, by far, the worst.
I have been cycling on and off since 2002, even riding in 3 or 4 century (100 miles) rides, but this summer I have been unable to ride. I separated my shoulder a few years ago in a fall, and afraid to ride due to the head fog I am in and I might fall again.
Whatever I have, I need to know so I can get treatment and get on with my life! I feel like I am in limbo.
I was curious about your background because you seem so knowledgeable in all your postings. I have a fear of dentists but have managed to find some really great ones, and I have a feeling you are one of the better ones.
I will look further into Lyme disease before my neurologist appointment. Having all the information I can is my goal so I can speak intelligently, give my input, and also know what the doctor is throwing out at me.
In the past I have been reluctant to discuss my symptoms with anyone, but recently I opened up to a friend of mine and explained what has been happening to me. He said his x-wife had been diagnosed with Lyme disease and my symptoms were extremely similar to hers. I told him that Lyme disease had been ruled out. By nature so many people want to help friends/loved ones find answers, but so often those good intentions are shot down, which is why I tend to keep things quiet. Now, in contrast, I have opened myself up to strangers, which seems to be much easier.
Again, thank you for your input and I will do my research!
I have not failed. I've just found 10,000 ways that won't work. -Thomas A. Edison
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!
I'll see the neurologist and go from there.
Thanks
Perhaps your posts need to have a bit more thought put into them.
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.
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
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~
My major concern over the posts made here by “medco” was that if he continues to posts these types of comments, the wrong person could be on the receiving end of what he has to say. Some people are hanging by a very delicate thread and comments such as his could be quite harmful. I have read some of his posts, and he seems to be extremely anxious with his own condition, but that does not give him license to be so arrogant.
Do I have anxiety about what is happening to me? Sure I do, but is that so irrational that I need to be medicated for it? Since when is a bit of anxiety something that has to be medically snuffed out? It’s what we used to call frustration or simply being a bit scared. Am I depressed? No!!! I have times when I feel down, but is that also irrational? I am a very happy person and I have a great life. Just because a person hits a bump in the road is doesn't mean that person is depressed. I have stated in my posts that I was prescribed antidepressants, even tried different types, but when I moved from PA to OH my new physician could not figure out why I was on an antidepressant. She didn’t see depression.
I think we could all be well advised to be careful what advice we listen to, and what advice we give.
Thanks to all of you…
…and Quix, I’ll stick around for some more of your worthwhile advice and direction. Do you ever find yourself trying to help so many of us here that you are overwhelmed by those seeking your wisdom???
Thanks for your comments.
I hope you find answers to your pchycological/health issues.
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.
I wish you well. I too am done with this exchange.
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~
It was pointed out by “medco” that “All Questions and Comments posted in the patient to patient forums are provided by individual visitors who are NOT MEDICAL PROFESSIONALS.”
This is NOT the “patient to patient forum.” It is the “DOCTOR to Patient forum.”
With that clarification stated, there are many people who might initially post here, desperate for an answer, asking a question and hoping it will be answered by an actual physician who can give some plausible direction. Are we not all here looking for direction or answers? Let’s HELP one another find the way.
AND my thanks to all who rallied and set the record straight! From what I have experienced most people here are here for the right reasons and have nothing but good intentions. You all have offered a lot of good advice and support to sooo many.
Medco…I sincerely hope you find closure with your personal turmoil and your agenda…and you DO have an agenda. There are many wonderful people available here to help you, embrace you, and virtually walk with you. It’s up to you.
I am a cyclist. Although most people believe cycling is an individual sport, that judgment could not be further from the truth. To win a race, not only does a team work together, but the peloton (a large leading group from all the teams) cooperates with one another throughout a race (or stage). Had it not been for the cycling ability of riders like George Hincapie and Floyd Landis, Lance Armstrong would not have been a TDF winner for seven years in a row. Lance will be the first to admit he could not have won without his team. (FYI…the Tour de France winner will forego his prize money and will give his winnings to his team…most people do not know that.)
My point is medco, put yourself aside for the greater good, put aside your personal agenda, and be part of the team. You posted a question in the Doctor to Patient forum, so you also are looking for answers or you would not be here, would you?
If you need support, we are here. If you need answers or suggestions, we are here. Break down that stone wall around yourself and let us be there for you. You sound like you are young and life has dealt you a crappy hand. That is not fair!
Several years ago I worked in special education and worked with a child who had severe epilepsy. His seizures were so server that I was allowed to be with him EVERY moment he spent in elementary his school years until he had surgery to remove the section of his brain causing the seizures. I learned quite a bit about seizures during those years.
I cannot presume to know what you are experiencing in your daily life, but I have had some personal experience with epilepsy and seizures.
Friend or foe?
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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’t Know About Nutritional Medicine.
Enhancers
It is critical that you know the necessity of adding Enhancers, which contain additional potent antioxidants, to your foundational cellular nutrition for optimal results. Patients who are suffering from a chronic degenerative disease or illness are producing more free radicals and are under more oxidative stress than the average healthy individual. Therefore, adding potent Enhancers to the basic cellular nutrition I recommend offers you the best chance to bring this oxidative stress back under control. The synergy and increased potency created by this approach to nutritional medicine is why I’m able to get such consistent improvement in the health of my patients.
However, in order to suit each individual’s unique financial situation, I always offer both an optimal and a minimal plan for cellular nutrition and for adding Enhancers. Obviously, one’s improvement of their health will be more consistent with the optimal recommendations; however, a minimal regime can still produce significant improvement in your health.
Recommended Enhancers:
Optimal:
Grape Seed Extract - 4 tablets daily
CoQ10 - 3 capsules daily
Vitamin C (additional) - 6 tablets daily
Calcium/Magnesium Tablet - 6 tablets daily
Additional Essential Fats - either 2 tbls of Flax Seed Oil twice daily or 4 capsules of Fish Oil
Minimal:
Grape Seed Extract - 4 tablets daily
CoQ10 - 2 tablets daily
Optimal Recommendations
Nutritional Supplement Breakfast Lunch Dinner
Antioxidant Tablet 2 2
Mineral Tablet 2 2
Calcium/Magnesium Tablet 3 3
Grape Seed Extract 2 2
CoQ10 2 1
Vitamin C (additional) 3 3
Flax Seed Oil 2 tbls 2 tbls
Fish Oil Capsule (may substitute for Flax Seed Oil) 2 2
Minimal Recommendation
Nutritional Supplement Breakfast Lunch Dinner
Antioxidant Tablet 2 2
Mineral Tablet 2 2
Grape Seed Extract 2 2
CoQ10 1 1
Choosing High-Quality Nutritional Supplements
One of the most difficult aspects of being involved in nutritional medicine is the fact that nutritional supplement companies are basically an uncontrolled industry. The FDA looks at supplements like foods. Nutritional companies are really not required to put in their tablets what they say is on their label. The quality of products that is placed in most supplements is of inferior quality and their manufacturing processes are generally suspect. People who have read my books or used this web site will sometimes go out to their local chain stores, drug stores, or health food stores and try to put together my recommendations on their own. The frustrating thing about this is that they think that they are doing what I am recommending only to either not get any health benefits from their efforts or very marginal results.
When you look at my nutritional recommendations for the Antioxidant tablet and Mineral tablet, you will quickly realize that you cannot get this amount of supplementation in a simple daily multivitamin. However, some companies are now putting all of the needed nutrients together in one or two different pills. In order to achieve the optimal levels I recommend, you will most likely need to take several (four to eight tablets) daily. The more antioxidants you take and the more variation your supplement provides the better. Also be sure that you are getting all the recommended levels of the minerals and the B-cofactors.
You need to spend a little time investigating the nutritional company you choose. You can locate information on the company’s website or you may need to call the company directly. Most importantly, you want a company that follows pharmaceutical-grade Good Manufacturing Practices (GMP). This means that they purchase pharmaceutical-grade raw materials and then follow pharmaceutical-grade Good Manufacturing Practices in producing their supplements. These companies produce what is called pharmaceutical-grade supplements, meaning similar guidelines are followed for manufacturing their products as companies making over-the-counter or prescription medications. The government does not require the manufacturers of nutritional supplements to do this; still, some nutritional companies put this extra effort into the manufacturing of their products to provide their customers with the assurance that they are getting what is on the label. These high-quality manufacturers will put the actual amounts of the nutrients found in their products on the label and give full disclosure of all the ingredients. You also want to find an expiration date on the bottle and the company’s full address.
Another aspect of quality that needs to be considered is whether or not the manufacturer of your nutritional supplements follows what are known as U.S. Pharmacopoeia (USP) standards. These are government guidelines that assure consumers that their medications and supplement tablets are of the highest quality and will dissolve properly and be readily absorbed into the body. Pharmaceutical-grade GMP’s would be rendered worthless if the company does not also follow USP standards for the dissolution of their tablets. If the tablet does not dissolve properly, it does not matter what they put in them. Choosing a company that follows the USP guidelines is certainly a step in the right direction.
Balance and completeness is another very critical aspect of choosing a high-quality nutritional supplement. Just like there are drug-interactions, there are also nutrient interactions that can create poor absorption and poor interactions. This is probably the most difficult aspect for the average consumer to really know or understand. Therefore it is critical to choose a company that understands completeness and balance in their products.
Another aspect to consider when you are researching a particular company is where it markets its products. A company that markets internationally usually has to follow higher standards than those who market only in the United States. Canada, Australia, and Western European countries have the highest standards for the manufacturing of nutritional supplements. Canada and Australia presently have some of the most restrictive requirements for nutritional supplements.
Starting Your Nutritional Program
Over 80 to 90% of my patients are able to start taking their nutritional supplements with absolutely no problems. The cellular nutrition that I recommend provides nutrients that you get from foods but at levels you just are not able to obtain from your foods. These are not herbs nor do they have any pharmaceutical properties. They are merely nutrients that our bodies need to function at its optimal level. My cellular nutritional recommendations have been developed to provide all the essential nutrients to the cell at these optimal or advance levels that have been shown to provide a health benefit in our medical literature. The level of the nutritionals provided in these recommendations are all well within safe parameters. However, you will be nourishing your body more effectively than you have ever nourished it before. The medical literature has shown us that when you supplement your body with these high quality, complete and balanced nutritional supplements that there are several health benefits. Remember, taking supplements is about health—not disease. Over time of supplementing a good diet and exercise program, you will not only optimize your body’s natural antioxidant defense system, but also, its natural immune and repair system. Your body will also now be able to begin to remove waste products (toxins) more effectively from the body. A small percentage of my patients (less than 10 to 20%) may experience some mild detoxification reactions.
Detoxification:
The most common detoxification reaction is mild muscle aches and/or mild headaches. These symptoms will usually pass within a few days to a week or two. If the discomfort is not unbearable, I simply have my patients continue their nutritionals as I have recommended. However, occasionally there is a more severe reaction. The patient is not in danger; rather, the amounts of nutrients are just too much too fast. In this case, I have my patients quit their supplements for a few days until the reaction subsides. I will then have them start back on their program but initially at lower doses (approximately one third of the recommended dose). Once they are tolerating this amount of supplementation, I suggest slowly building up to the recommended doses.
Some of my patients actually develop a "detox" skin rash somewhere on their body. As you know, the skin is an important route for ridding the body’s toxins. This rash is a dry, red rash that looks almost like a mild sunburn. Some people confuse this with an allergic reaction to the supplements. I have never seen an allergic reaction to the high-quality nutritional supplements I recommend.
Patients may also experience some aspect of loose stools or even diarrhea. This again is a common "detox" reaction because the GI tract is another prime route for eliminating toxins from the body. This symptom will usually diminish within 7 to 10 days. It is an important part of the detoxification and healing process. Therefore, I usually encourage my patients to continue the supplements as recommended unless their bottom gets too sore. I will then again recommend lower doses of the supplements until they feel better and then begin adding the supplements back more slowly until the recommended doses are reached.
Natural Relaxation Response:
A small percentage of patients develop a natural relaxation response when minerals are absorbed into their body. This is of great concern to those patients who have just been told that nutritional supplementation may potentially improve their energy level. They take the supplements as recommended only to find themselves more fatigued and dragging themselves around throughout their day. If you experience this response, I recommend that you take all of your minerals with a light bedtime snack. This allows you to take advantage of your body’s response while getting a good night’s sleep.
Stomach Upset:
A small percentage of patients have difficulty tolerating vitamin C. It can cause an upset stomach that will usually become evident a couple days after starting their nutritional program. The vitamin C I recommend usually is found in the Antioxidant Tablet. If you are experiencing significant nausea, I suggest taking just one Antioxidant Tablet with the largest meal. Once this level of supplementation is better tolerated, I suggest slowly adding another Antioxidant Tablet to the next largest meal. I anticipate building them up to the recommended level of supplementation, but sometimes this is just not possible. For those extremely sensitive, I advise just taking the amount of Antioxidant Tablets that they can tolerate even if this is just one or two per day.
www.antoniogiuliano.com
And how is this heat working for you today???
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
Patsy
Isn't it frustrating ? The symptoms of CFS & Fibro are almost identical to lyme disease and the lyme disease tests are often false negatives !
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.
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. = )
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’t even have a diagnosis yet. Perhaps someone posting here might be interested.
****A number of patients with CFS, FM, and other chronic illnesses such as lupus and Lyme disease are reporting success with the experimental Marshall Protocol, originally developed for relieving the symptoms of patients with the "Th1" inflammatory disease sarcoidosis. (See the Marshall Protocol message board at http://www.marshallprotocol.com, and "A Journey Towards Complete Recovery from Chronic Fatigue Syndrome"****
Are we deing ignored???? LOL
I had attempted to read up on the Marshall Protocol, but the website was difficult to navigate with my head fog, so I surrendered. I posted the information just in case someone else would be interested.
Plateletgal…have you tried the Marshall Protocol? Sorry if we are rehashing old subjects.
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.
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.
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.
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 !
Hi Quix,
MCS stands for multiple chemical sensitivity.
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.
"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)
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.
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’s? Why does this seem to be the same answer so many people receive???
Are you going to the Mayo?
Big hug to you!
Where do you stand as of now?
Big hug to you as well. I know the feeling of wanting to feel well.....
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.
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......
My next suggestion for your peace of mind would be to move your posting over to the “patient to patient” multiple sclerosis forum. There is a great group over there who can offer wonderful support, informed answers, and some humor.
I know I haven’t given you any real answers, but they will come in one way or another. In the meanwhile, come on over to the MS forum.
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.
Patsy
Have you posted in the MS forum? Your experience and suggestions could be useful over there as well. Hop on over if you’d like. It’s been fairly active.
The MS forum “Den Mother” (Quix) gave me some tips on formulating a time line to take to the neurologist. It has been very helpful for me as well to put everything into a string of events.
Hope you are doing well and thanks for your information.
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?
Have you been to a neurologist?
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 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.