I would love to have a diagnois.

[ProfessorHall]

Why is MS so extremely difficult to diagnose? I was in perfect health, no problems at all. I am the only one in the country so far on a federal medical disability retirement and SSDI for having 100% of the symptoms of Progressive-Relapsing MS, a classic text book case, without a diagnosis of MS or any illness or disease. The neurologists I have seen have done more then $100,000 of extensive and elaborate diagnostic and lab testing, the finest and best known today, for diagnosing any known illness or disease, but everything comes back normal. Every known neuromuscular disease, strokes, TIA's, and any known illness or disease ever discovered in the last 150 years has been ruled out, except MS. MS has not been ruled out, (as I have 100% of the symptoms unique to only MS), and MS has not been ruled in, (no lesions seen on MRI's). Now I am home confined, in hospice care,largely bedridden, unable to drive, hourly relapses, monthly progression, loss of some sight and some hearing, loss of all reflexes, severe pain, loss of most swallowing, impaired breathing, and I am in an electric wheelchair, since everything begin overnight in October 2004, without diagnosis.

[Abby1981]

Please see links below.
Recently diagnosed with Aspartame poisoning after consuming excessive amounts of Sugar Free chewing gum and diet sodas containing Aspartame. I had symptoms of MS and Lupus and the doctors could not pin point my diagnosis so I googled Phenylalanine which is in the sugar free gum and up came Aspartame, all my symptoms matched up. THIS IS AN EPIDEMIC and mimics the symptoms of MS, Lupus and several other diseases. This had made news in New Zealand as the first reported case.

WHAT EXPERTS SAY ABOUT ASPARTAME and ABBY CORMACK


“Tragically, Abby's experience with aspartame is far from unique.  In1985 I first encountered a clinical situation in which aspartame clearly triggered a manic episode in one of my patients. initially made an incorrect diagnosis of bipolar disorder and actually started a treatment regimen of lithium carbonate.  The overall picture however was not totally consistent with bipolar illness, especially as a grand mal seizure accompanied the "manic"episode.  Some detective work as to what was different in my patient's life resulted in the conclusion that the only significant change was the sudden introduction of a large amount of Crystal Lite (aspartame) into her diet.  The total elimination of all aspartame >resulted in fairly rapid resolution of her symptoms.  The lithium was discontinued and she has remained symptom, and aspartame, free. I believe it is essential for all physicians to include a dietary history when assessing patients. Whenever aspartame is found to be included in the diet, I would encourage all health care professionals to educate their patients about the hazards and encourage complete abstinence from this artificial sweetener. In my own practice, I have found that many patients improve substantially with just this simple change. In particular, patients with underlying mood disorders appear to be particularly sensitive to the adverse consequences of this extremely hazardous substance.”
Dr RG Walton MD, Medical Director, Safe Harbor Behavioral Health, Professor of Clinical Psychiatry, Northeastern Ohio Universities College of Medicine, Adjunct Professor Of Psychiatry, Lake Erie College of Osteopathic Medicine.

"Aspartame/NutraSweet cripples the lives of thousands of people.  When I tried to persuade the president of the Searle Drug company, manufactures of that chemical sweetener, to do the tests that would find any dangers it posed before it was marketed he blew me off.  His name was Donald Rumsfeld (Iraq war architect).  In exchanges about aspartame safety with him and his company I learned how little he values human life."
Attorney James Turner, Atty, who with Dr. John Olney tried to prevent approval of aspartame.
Meet Don Rumsfeld: www.soungandfury.tv/Paes/Rumsfeld.html

“I have reviewed the recent experience of Abby Cormack while  chewing four (4) packs of aspartame gum daily, based on her "medical  timeline 2007" -- coupled with the details of her testing and doctoring by interested and competent professionals, and the dramatic improvement of her psychological and most other symptoms following the avoidance of aspartame products.
Her problem appears to be largely due to aspartame disease, as I have detailed in many publications.  I have reported severe depression, anxiety, insomnia, cramps, speech disturbance, confusion, blurred vision, eruptions, and neuropathic symptoms in numerous aspartame reactors consuming both gum and other products containing this chemical.  Fortunately, her mother suspected the cause which had escaped the attention of several doctors. I have admired the great emphasis by persons in New Zealand and its government on avoiding exposure to a variety of toxic substances. The serious documented affliction of this young woman due to consuming aspartame is probably replicated by many other consumers in the country, and warrants the profound attention of its regulatory agencies.”
Dr.  H. J. Roberts, M.D., FACP, FCCP  Named The Best Doctor in the USA by a national publication, author of 1,000 page medical text - Aspartame Disease: An Ignored Epidemic:


"Curiosity about the safety of Aspartame need go no further than the indisputable fact that each molecule of the sweetener turns into a molecule of Formaldehyde when metabolized in the human body.  Enough said!”  
Dr. Woodrow Monte Ph.D. ,University of Arizona, professor of Food Science, early investigator of aspartame, now residing in New Zealand.  

www.dorway.com
www.wnho.org




http://en.epochtimes.com/news/7-7-23/57897.html

http://www.tv3.co.nz/VideoBrowseAll/VideoAll/tabid/303/articleID/30896/Default.aspx?articleID=30896

http://tvnz.co.nz/view/video_popup_windows_skin/1193703?bandwidth=128k

http://www.tv3.co.nz/News/HealthNews/tabid/191/ArticleID/29322/Default.aspx

http://www.stuff.co.nz/4102374a20475.html

[PlateletGal]

I would consider seeing a  physician who knows how to diagnose & treat fibromyalgia.... it sounds like that is what you may have.

Good luck !

[jenedd]

I have been havingjust about all the symptoms you have described. The tingling and buring, the dizziness, fatigue, gi problems, numbness, and many others. I too have many of the symptoms, if not all for MS. I had an MRI in Dec of 06, and no lesions. I was thinking of asking my doctor about a spinal tap. All other lab work has been notmal. To hear someone else with the same problems actually makes me feel a little better and at the same time I feel a little more hopeless. I have three beautiful children, the oldest is 9 then 7 then 1 year. All of this started about 6-8 weeks after the birth of my youngest child. This is so hard to deal with because I don't feel I can be the same with my youngest as I was with the other two who are a little older. All of this information that I have been reading in this blog sounds great. But does anyone know of a good doctor who will isten and not just think that you are crazy? I am just about willing to travel anywhere. It is so very frustrating, and all of the symptoms just seem to get worse. More tingling and numbness, and my torso muscles seem to not want to work sometimes. I don't knowhow else to explain this. I know this is just completly jumbled but I am at my witts end. Maybe we chould all get together and find someone who will do a study on us. We all seem to have the same problems and can't get a diagnosis.

[heart2heart]

I was reading your post and I noticed I also have some of the symptoms you have! You mentioned those "ice pick" headaches, and I have spent many years trying to figure out what those headaches were. They first appeared in my 20's (I am in my 50's now)  - I was also battling dizzy spells for many years. Those headaches are indeed called Ice pick headaches and they are more common in migraine sufferers but the etiology is unknown. Lucky for me, most of mine went away. I think a migraine preventative drug can help you get rid of these (ask your doc)  I also get all kinds of zingers, shooting, stabbing pains, lightning like pains, either in my hands, arms, back but I assume mine are from the pinched nerves from a degenerating spine. Now have you have your spine MRI'd - particularly the cervical spine?? BTW, others have mentioned fibromyalgia, and you can get a whole plethora of symptoms from fibro - I'm also a fibro sufferer - which only adds to the confusion of trying to sort the symptoms out. Good luck to you, hope you get some answers soon.

[PlateletGal]

You know you may have hit the nail on its head. When the poster mentioned the reflexes, that had me concerned. If I remember right, this can happen with Guillain Barre syndrome.

I'm wondering if the poster had a flu like virus or a flu shot before he/she had these symptoms ?

[Nurseynurse714]

Hi. I may have missed this info in some of your earlier posts, but are you male or female? What part of the country do you live in? How long have your sx been present? Shot in the dark here not knowing this additional info, but has anyone ever considered Guillain Barre syndrome (if sx have been of a shorter duration, but assuming not if you've gone through and been granted disability income) or a type of polyradiculopathy?

[ProfessorHall]

Thank you kindly for all of your comments. I remain positive, but I have been very ill lately. Many diseases have some of the same symptoms as MS. I could have CFS, but I also have symptoms unique to only MS and not to any other disease. I have symptoms associated with lesions on the brain, even if no lesions are seen on MRI's. Thus, I cannot accept that I have no lesions on my brain!, (according to my former neurologist, and I fired her, since she pays no mind to any symptoms of any patient) All lesions on the brain cause specific brain lesion symptoms be it ALS, MS, TIA's, stroke, etc. I will check out my vitamin D and B-12 levels, and thyroid level. Thanks. I could have several different things going on, then one. The Functional Capacity Evaluation physical therapy team thought I had MS since certain symptoms unique only to MS can be greatly increased with my spine positionally placed. That is, if I am lying on my back and the physical therapist moves my legs a certain way, certain MS symptoms will be greatly increased at that very moment. I have full recovery upon being sat up. Thanks again. One final thing. I have met doctors who, if they cannot find a thing wrong with you, they believe you are faking it and I have been referred to psychologists for a mental evaluation!!!
Professor Hall

[PlateletGal]

Good luck with your search and don't give up !!! I had to go through the same thing to get my diagnosis. Fortunately my physicians' were all trying to help me, but I had to keep searching for one who could actually diagnose and treat me.

Just a note: Neurologists are seeing brain lesions on MRI's from patients' who have CFS. There is a way for neurologists to tell the difference though. Also, some CFS patients' have the confusion, weakness and some other symptoms that MS patients' share. I remember once I was reading something out loud and couldn't say the word, even though I knew it !  As I said earlier, both MS patients' and CFS patients' usually have low uric acid levels. CFS patients' often have low cortisol levels (secondary adrenal insufficiency).

[PlateletGal]

I would also consider asking your physician to check your cortisol level. The reason why I say this is because studies have shown that CFS & FM patients' have endocrine problems (this includes myself) and low cortisol levels. In addition, many CFS/FM patients' from what I can tell have low normal thryoid levels as well... including myself. If your cortisol level is low, then your physician should order an ACTH level on you.

[PlateletGal]

"She said there is no way that a doctor can ever diagnose vertigo and ringing of both ears, which I have 24/7"

Any physician who can diagnose and treat fibromyalgia and CFS would know that both tinnitus (ringing in the ears) and vertigo are common symptoms of both of these illnesses. I would seriously consider seeing a physician who specializes in fibromyalgia; perhaps a rheumatologist ? I don't have fibromyalgia myself, but know many people who do and these people are suffering from shooting pains, burning, vertigo, ringing in the ears and some fatigue. It seems fibro patients' often have some immune problems and like CFS patients', they have a harder time recovering from surgery than healthy patients'. This illness can be disabling and especially for those fibro patients' who have some CFS symptoms. Weakness is a CFS symptom --- check out Dr. David Bell's list of symptoms for CFS. Dr. Bell is a Harvard graduate and one of the world's leading CFS researchers'. You may want to do some research online first and check out some of the fibromyalgia support groups and see if you could relate to what other fibro patients' experience.

Have your physicians' done any labwork on you ? If not... I believe they really should check you for lyme disease and do a complete work-up on you. I believe they should also check your CRP and sed rate levels (inflammation), perhaps an ANA. 25% of people with CFS have a positive ANA and so does a large percentage of people with fibromyalgia as well.

[PlateletGal]

You may want to see if any of this information is helpful to you. I think it will be.

http://www.cfidsselfhelp.org/artcl_family_illness_overview.htm

[ProfessorHall]

I just got back from my neurologist.

She said there is no way that a doctor can ever diagnose vertigo and ringing of both ears, which I have 24/7. I saw an ENT and I had MRI's done since these two symptoms first started overnight in January 2003. The ENT could not rule in or out these two problems. So I have those two problems for life without ever having hope of a diagnosis and treatment. I just silently suffer.

Further, she said the nerve conduction study or any neurological test cannot ever diagnose the following problems I have since October 2004:

(a) feet: 24/7 burning sensations, 24/7 hot and cold sensations, 24/7 shooting and stabbing pains, 24/7 pins and needles, 24/7 numbness, 24/7 obvious seen to the naked eye swelling and progressive neuropathy, occasional feeling of ants crawling on the feet and biting them, 24/7 drop feet, occasional feet giving out, etc.
(b) shoulders, arms, hands, fingers, toes, legs, torso: occasional shooting and stabbing pains.
(c) obvious seen to the naked eye, progressive neuropathy of the legs.
(d) occasional hot and cold sensations on the entire left side.

So I have these neurological problems for life without diagnosis and treatment. I just silently suffer.

I am learning that multiple sclerosis is nearly impossible to diagnose. But I remain postive through it all.
Professor Hall

[ProfessorHall]

Thank you very much for your comprehensive writing. I do appreciate it. I am undiagnosed, except very recently for social security officials, my neurologist gave me a diagnosis of progressive cerebral degeneration. I am not confused. I do crossword puzzles and my mind is clear. Lyme Disease has not been ruled in or out, so I will mention it to my neurologist. I have not had a spinal tap. I have not had the urine and blood tested for MS. I turned 50 in 2004. 15th Sept. 2004, I had a left arm injury at work, causing bursitis in left elbow. Since October 2004, I have had obvious neuropathy in my lower legs and feet as clearly seen by the naked eye. It looks like I am a diabetic, but I do not have diabetes. My lower legs soon lost hair. My blood pressure is 100/60, with a pulse of 80. I am 6'3", weight has been the same, no change at 230 lbs. I was a law enforcement officer and instructor in perfect health, nothing wrong with me. I was very physically active at work, home, and recreation. I don't smoke or drink alcohol. I never used illegal drugs. I watch what I eat. I don't get colds or the flu. I never called in ill to work. For very short distances, I can use a walker. I largely use an electric w/c.The evoked potentials, EEG's, MRI's, etc. always come back negative. Left arm, left leg and left foot have less sensitivity to pain then the right side. I can feel pain in the arms, legs and feet but much less then before. TIA's and stroke ruled out. No cancer. Since October 2004, suddenly, overnight: (1) my feet: 24/7 swollen and numbness, loss of most function of the feet, sporadiac sharp tingling and sharp pins and needles, the feeling of ants crawling on my feet and biting them, occasional hot and cold sensations, the feeling that someone poured gasoline on them and lit them on fire, drop feet, and occasionally a foot or feet will completely give out, causing a fall, (2) hot and cold sensations on the left side, reduced with steroid treatment, (3) hourly relapses, monthly progression, (4) 24/7 vertigo and ringing of both ears, (5) occasional optic neuritis, mainly right eye, (6) frequent muscles tightening up and frequent muscle spasms, (7) 24/7 torso shakes when sitting or lying down, and loss of most torso muscles, (8) if I lie flat on my stomach or back, I cannot move my legs at all, (9) 24/7 ataxia, lack of coordination, and frequently falling down, (10) occasional SOB, difficulties swallowing, and occasional severe choking on my own saliva, (11) occasional problems with cognitive thinking, but good memory overall,  (12) occasional dysesthetic itching, (13) occasional sharp shooting pains in shoulder(s), torso, leg(s), foot or feet, toes, arm(s), hand(s), fingers, (14) severe fatigue, (15) extremely difficult for me to rise up and the longer I sit, the weaker my legs become, (16) three different times in two and a half years, for several hours each, "ice pick" stabbing headaches, enough to kill you, (17) occasional difficulties with speech and projecting my voice, (18) occasionally a leg(s) will completely give out, (19) I had an abnormal Vitamin B-12, corrected with shots and vitamins, (20) I had an abnormal thyroid, corrected with medication, (21) incontinent of bowel and bladder, (22) digestive system is not working right and I have seen a GI MD, (23) loss of shoulder muscles, and much weaker in arms and legs, with a total loss of hand grip, and (24) sometimes it feels like someone is lightly brushing my face with a feather. from Professor Hall

[PlateletGal]

I forgot to mention something. Have you had a uric acid level drawn ? To my understanding, patients' with MS usually have very low uric acid levels. However, so do patients' with CFS --- according to Dr. Paul Cheney.

I hope this information is helpful and can point you in the right direction towards your diagnosis.

Best of luck to you. Keep us posted if you can.

[PlateletGal]

I share your frustration. I have chronic fatigue syndrome and it has taken me many years to get my diagnosis. After I had a severe case of mono, I had always told my relatives & friends that I never completely recovered. Recently the CDC had their CFS awareness campaign and they even provided a toolkit for physicians' online. However some physicians' are still in the dark age when it comes to this disabling illness and as a result, an estimated 80% of patients' with CFS have yet to be diagnosed. The symptoms of CFS are almost identical to those of lyme disease, so I agree with the poster above. In addition, just like MS, many times people with CFS have white lesions on their MRI. (brain)

I think you will find this link very interesting and comforting. All of your symptoms I believe are listed here, including the dysphagia (difficulty swallowing). This research protocol is treating patients' who have lyme disease, CFS, sarcoidosis, fibromyalgia and other neuro-immune disorders. They do not use research medications and any physician can put you on this protocol --- my Endocrinologist prescribed it for me. I had labs drawn and clearly have vitamin D dysregulation due to bacteria. There is a lot of information on this website that I think will be helpful to you and at least you give you some of the answers you've been looking for:

http://www.marshallprotocol.com/forum2/2588.html

[CC2007]

Hi, Professor Hall....

I didn't see Lyme disease on your list.  Its symptoms mimic MS symptoms and it can evade detection in both blood and spinal fluid.  It will keep progressing unless antibiotics are given.  There are also co-infections that can occur with it that are also difficult to detect. Once all this gets into the pristine environment of the central nervous system, all sorts of bizarre things occur.  I had neuro-Lyme for 2 years and I have described it as being the unwitting victim of a horrific scientific experiment and then being denied the antidote. I saw 14 doctors and it was missed by all of them.  I figured out for myself when I found it on the Internet.  I found a Lyme specialist and just got off of antibiotics after 37 months.  Here's a symptoms list for you to print.  To have a disability such as yours caused by untreated Lyme disease would not be out of the ordinary.  Also, go to www.LymeNet.org and click on Flash Discussion and then Seeking A Doctor. Post there with your city and state and someone will email you privately. That's if you are interested in finding a Lyme specialist or you can email me: ***@****

Musculoskeletal System
Joint pain or swelling or tenderness
Stiffness of joints, back, neck
Muscle pain or cramps
Bone pain
Heavy feeling in one or more limbs

Neurological System
Tremors or unexplained shaking (especially at night)
Burning or stabbing sensations in the body
Weakness or partial paralysis/stroke-like symptoms
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness
Sudden jerking of fingers or entire limbs
Pain in spinal column

General Well-being
Unexplained weight gain, loss
Extreme fatigue
Swollen glands
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.  (If it was mild, you may not even recall this.)

Eyes/Vision
Double, blurry or dim vision
Increased floating spots
Pain in/behind eyes, or swelling around eyes
Over sensitivity to light
Flashing lights
Optic neuritis

Ears/Hearing
Decreased hearing in one or both ears
Buzzing or clicking noises in ears
Pain in ears or sound sensitivity
Ringing in one or both ears
Pressure or feeling of fullness in ears

Digestive and Excretory Systems
Diarrhea, irritable bowel
Constipation
Irritable bladder (trouble starting, stopping)
Frequent urination that is not normal
Upset stomach (nausea or pain)

Respiratory and Circulatory Systems
Shortness of breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Heart blockage

Psychological well-being
Mood swings, irritability, rage
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Overemotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep

Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking, brain fog
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

Head, Face, Neck
Unexplained hair loss
Headaches, mild or severe
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, cheek or face
Stiff or painful neck or creaking
Jaw pain or stiffness
TMJ

[Kevin Pho, MD]

This seems like a difficult case, and it is clear that a comprehensive workup has already been done.

With any test, it is impossible to achieve 100% diagnostic certainty.  There is always a small chance of a missed diagnosis.  

Normally, a combination of MRI, CSF analysis, and evoked potentials are needed for diagnosis.  Newer modalities like antimyelin antibodies can also be done if the diagnosis is in question.

I would obtain another opinion at a major academic medical center.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_