Aa
I am very frustrated! Help! Aaargh!
My question: is ANYONE going through what I am going through?!!! I remain positive and upbeat, and I ask for no sympathy or pity. Due to my current condition, my neurologist placed me in hospice. I am largely at home, often in bed. I am undiagnosed, except very recently for social security officials, my neurologist gave me a diagnosis of progressive cerebral degeneration. Since October 2004, I have 100% of the symptoms of Progressive-Relapsing MS, without any diagnosis. I am not confused. I do crossword puzzles and my mind is clear. Very comprehensive testing has been done on me. 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
from Professor Hall
I need to retract something I said in my last post. The lab tests for anti-MOG and anti-MBP ARE available commercially. Several labs offer them. However, I cannot find any MS clinics that include them in their protocol. I suspect there is no way to use them predictably in diagnosis, but that does not mean that in individual cases a physician might not find the results useful.
Quix
Quix
Hi Professor Hall,
Just a comment to add to the comment Quix made about the distinction between signs and symptoms, relating to a much earlier statement you made about psychological/psychiatric diagnosis. I am also a psychologist. Yes, we diagnose based on reported and/or observed symptoms. However, as I'm sure you are aware, the DSM is an attempt to make psychological/psychiatric diagnosis more objective and less subjective. Technically, we can't diagnose a client with a disorder unless they meet specific criteria. Even so, we don't yet have a blood test, culture, etc. to aid in diagnosis. But don't we often wish we did, to make diagnosis even more objective?! As you know, symptoms of various disorders overlap, and sometimes it just isn't clear what diagnosis is most appropriate for a particular client.
Your frustration about having all the "symptoms" of MS but not being diagnosed with MS is understandable, yet since the "signs" have not been demonstrated, not unlike the "rules" we must follow in terms of diagnosis, either.
Just a comment to add to the comment Quix made about the distinction between signs and symptoms, relating to a much earlier statement you made about psychological/psychiatric diagnosis. I am also a psychologist. Yes, we diagnose based on reported and/or observed symptoms. However, as I'm sure you are aware, the DSM is an attempt to make psychological/psychiatric diagnosis more objective and less subjective. Technically, we can't diagnose a client with a disorder unless they meet specific criteria. Even so, we don't yet have a blood test, culture, etc. to aid in diagnosis. But don't we often wish we did, to make diagnosis even more objective?! As you know, symptoms of various disorders overlap, and sometimes it just isn't clear what diagnosis is most appropriate for a particular client.
Your frustration about having all the "symptoms" of MS but not being diagnosed with MS is understandable, yet since the "signs" have not been demonstrated, not unlike the "rules" we must follow in terms of diagnosis, either.
I read the three cites about with great interest, but I'm afraid the news isn't as good as one would hope. One has to be very careful about how they evaluate info like this. The study, by "Berger, et. al." studied about 100 people who had been diagnosed with a "Clinically Isolated Syndrome" , that is, ONE episode of symptoms suggestive of MS, accompanied by "suggestive lesion(s) on MRI. This is a group of people that statistically have a high risk for moving on to develop "Clinically Definite Muliple Sclerosis". About 80% of these people will do so. But the problem has been to determine which 80% that is.
Currently, the recommendation is to start these people on Disease Modifying Therapy to slow down their progression to full-blown disease. But, these meds carry some potential side effects and are VERY expensive (mine is $1,510 per month!!) So they have been looking for "predictors" to chose the group to treat as specifically as possible.
The study that is referred to above found antibodies against proteins of myelin circulating in the blood. These are called anti-MOG (anti-myelin oligodendryte glycoprotein) and anti-MBP (anti-myelin basic protein). The study published in 2003 felt that levels of these proteins could help predict who would progress from that first CIS to full-blown MS.
But, you need to look at that study with regard to when it came out and what has been found out about it since then.
I noticed that all three cites provided referred to just one article/study. I also notice that all the cites were from 2003 and 2004. Three and Four years ago! If this had proven to be a viable test it would have a huge amount of study since then and if, useful, would be available now. Neither are true.
That first study has not been reproducible. Follow-up studies have not shown these antibodies to be useful markers. That's why our MS specialists aren't using them. A large 2 year study examining this was published last January (2007) in the "New England Journal of Medicine" and found NO ASSOCIATION between these antibodies and conversion to Clinically Definite MS.
Here is the cite to the 2007 NEJM article, called "Lack of Association Between Anti-Myelin Antibodies and Progression to Multiple Sclerosis."
http://content.nejm.org/cgi/content/abstract/356/4/371
Most of the research has been on animals such as marmosets. But I did find that research is progressing in this area and that there is some EARLY promising findings both with anti-MOG and anti-cerebroside antibodies. These findings are still in the earliest stages of research and are not at all standardized to use in human diagnosis.
Hall, I don't understand why you would fly to SF for a research-only blood test and not have a spinal tap which has a higher likelihood of revealing good data. To do this test on you without any data that it is predictive in human disease is unethical and could cause the researchers to lose their grant.
I also don't understand why you say you don't have spinal cord disease, when spinal cord involvement is so very characteristic of all forms of MS.
Also you asked about having 100% of the SYMPTOMS of PRMS meaning you must have the disease. This is not at all the case. A SYMPTOM is something felt or complained of by the patient. It is by definition subjective. Unlike psychology, I guess, having a symptom, does not define a disease. MS, in particular, requires also SIGNS ("objective" evidence to the "examiner") and also some positive findings on some objective testing. You can have 100% of the symptoms of strep throat, but not have strep throat. People with Hyperventilation Syndrome complain of 100% of the symptoms of a neuropathy (tingling in the hands) yet do not have a neuropathy. Your logic is terribly faulty.
Well, I'm done with this.
Currently, the recommendation is to start these people on Disease Modifying Therapy to slow down their progression to full-blown disease. But, these meds carry some potential side effects and are VERY expensive (mine is $1,510 per month!!) So they have been looking for "predictors" to chose the group to treat as specifically as possible.
The study that is referred to above found antibodies against proteins of myelin circulating in the blood. These are called anti-MOG (anti-myelin oligodendryte glycoprotein) and anti-MBP (anti-myelin basic protein). The study published in 2003 felt that levels of these proteins could help predict who would progress from that first CIS to full-blown MS.
But, you need to look at that study with regard to when it came out and what has been found out about it since then.
I noticed that all three cites provided referred to just one article/study. I also notice that all the cites were from 2003 and 2004. Three and Four years ago! If this had proven to be a viable test it would have a huge amount of study since then and if, useful, would be available now. Neither are true.
That first study has not been reproducible. Follow-up studies have not shown these antibodies to be useful markers. That's why our MS specialists aren't using them. A large 2 year study examining this was published last January (2007) in the "New England Journal of Medicine" and found NO ASSOCIATION between these antibodies and conversion to Clinically Definite MS.
Here is the cite to the 2007 NEJM article, called "Lack of Association Between Anti-Myelin Antibodies and Progression to Multiple Sclerosis."
http://content.nejm.org/cgi/content/abstract/356/4/371
Most of the research has been on animals such as marmosets. But I did find that research is progressing in this area and that there is some EARLY promising findings both with anti-MOG and anti-cerebroside antibodies. These findings are still in the earliest stages of research and are not at all standardized to use in human diagnosis.
Hall, I don't understand why you would fly to SF for a research-only blood test and not have a spinal tap which has a higher likelihood of revealing good data. To do this test on you without any data that it is predictive in human disease is unethical and could cause the researchers to lose their grant.
I also don't understand why you say you don't have spinal cord disease, when spinal cord involvement is so very characteristic of all forms of MS.
Also you asked about having 100% of the SYMPTOMS of PRMS meaning you must have the disease. This is not at all the case. A SYMPTOM is something felt or complained of by the patient. It is by definition subjective. Unlike psychology, I guess, having a symptom, does not define a disease. MS, in particular, requires also SIGNS ("objective" evidence to the "examiner") and also some positive findings on some objective testing. You can have 100% of the symptoms of strep throat, but not have strep throat. People with Hyperventilation Syndrome complain of 100% of the symptoms of a neuropathy (tingling in the hands) yet do not have a neuropathy. Your logic is terribly faulty.
Well, I'm done with this.
It looks to me like these tests are from a study. I work as a study coordinator in a surgeon's office. I would caution you to make sure these tests are regulated and approved by the food and Drug Administration. It takes years to collect data from studies such as these to determine their safety and efficacy. Who is sending them to you? Are you actually going to draw you own blood? How did you hear about them? Did you contact them? Did they contact you? Do they require follow up? I would be very careful....People here care about you!
The University of California at San Francisco first developed MOG blood testing to diagnose MS in lieu of MRI's, looking for lesions. AirTran is shipping me to that University in August for this special test. Professor Hall
http://msaa.com/articles/article2.html
http://www.neurologyreviews.com/aug03/nr_aug03_litmon.html
Can a Blood Test Predict MS?
http://www.newswise.com/articles/view/?id=02MEET03.ANR
http://msaa.com/articles/article2.html
http://www.neurologyreviews.com/aug03/nr_aug03_litmon.html
Can a Blood Test Predict MS?
http://www.newswise.com/articles/view/?id=02MEET03.ANR
I agree, it is quite bizaare to have a body destroyed by disease, but have a completely normal exam and no hope of any diagnostic test ever being helpful. It must make you feel very "special" and, at the same time, quite lonely. I'm sorry no one here can help you.
When you learn the name of the blood test that shows MS, please let us know. None of us have ever heard of it. Quix
When you learn the name of the blood test that shows MS, please let us know. None of us have ever heard of it. Quix
Thank you kindly for your reply.
I am not emphatically stating I have Progressive-Relapsing MS, but I have all of the symptoms listed on the MS website, classic textbook case. Maybe I have something else that exactly copies MS. How many different diseases are out there that exactly copy MS?
So, if you have the 100% of the symptoms of a disease, do you have the disease? This question needs to be asked of all doctors.
In my observations of students, if they exhibited most or all of the symptoms of a psychological disorder, I believed they had the psychological disorder. Maybe I was wrong.
My MRI's do not show lesions. I don't know what MRI machines I had so I will check this out. Thanks. I was told the MRI's were new, and I had both open and closed, with and without contrast.
Hourly relapses: I always have these PR-MS neurological problems 24/7 since October 2004, but they vary from moderate to severe per hour. Maybe the word relapses is wrong. I never know how I am from one hour to the next.
A neurologist didn't think I had CIDP but he wasn't sure.
Well, you can test me. I am unique. You sound well qualified.
At any point in time, either foot or either leg or either knee or the torso can suddenly give out. I do no have a spinal cord problem. My kness are worn but overall, I do not have knee problems. Thus, I use electric mobility for safety.
Basically, the neurologists I have seen rely on one thing ONLY: they want to see lesions on MRI's, period.
I may have had radiation exposure as a child, which can can bring on ALS or MS later on.
I had a left arm injury and two weeks later, all of my symptoms began. Child birth, a car accident, an injury, stress in a job, etc. can bring on ALS or MS.
Wilson's Disease was ruled out. I have had extensive testing done, including at a MS center. Please note. When I was hospitalized in grave condition in the last year, every test came back normal, all. The cultures done in the lab were all negative. By symptoms only since I was in critical condition in failing health, after not being diagnosed and treated, I was diagnosed with severe sepsis in the blood. Then I was treated for that and in six months, I completely recovered. I am thankful the doctor chanced it and diagnosed me by symptoms only.
Mayo Clinic was looking for spinocerebellar ataxia, which was ruled out of certain ataxias, not all. The only real noticeable thing was that they said my cells were altered or mutated, whatever that means. They didn't explain.
It is possible that if cells have been damaged by radiation that they will not test well in MRI's and lab tests. I don't know. I have not seen any reports of this.
I have not given up. I never will. I will contact universities but I am afraid that tests will still come back negative. Thanks for that suggestion.
I develop new neurological symptoms each month. I am frustrated only. I have noticeable monthly progression. I have since learned I lost all reflexes, all hand grip, all torso muscles, my torso muscles can tighten up, I have torso muscle spasms, and I am getting weaker and weaker each month, melting like the witch in the Wizard of Oz.
The main problems now are swallowing, choking on my own saliva, and some breathing problems, usually nights, (night time oxygen saturation can drop to 80% but I do not have apnea or any sleeping disorder).
If I am flat on my back, or stomach, I cannot move my legs. Each hour, I am worse and worse until I become paralyzed from the neck below, but I can move my arms, (but staggered movements) Thus, I have an electric bed as I cannot be on my back.
If my physical therapist moves my legs with me lying flat on my back, I will develop far greater intensity of current neurological symptoms. I have full recovery upon being sat up.
MS can be discovered in the blood.I have not had this test.
Each hour I sit, my legs get weaker and weaker. Thus, I have to occasionally stand or walk to prevent frozen legs. I can use the walker for short distances and I do water therapy. If I have frozen legs, I eventually recover upon moving around. Sitting in a car, I can freeze up from the neck below. I have full recovery upon some movement.
The sepsis paralyzed me on the right side for six months but now I am fine.
One time, I woke up and I was paralyzed on the right side for most of the day. I did not have a stroke or TIA.
I am not on any medications by my own choice. I am researching what I can take. Steroids and other medications caused heart problems. But my heart is fine.
I am a mystery man. They need to name my disease Professor Hall's Disease.
Professor Hall
I am not emphatically stating I have Progressive-Relapsing MS, but I have all of the symptoms listed on the MS website, classic textbook case. Maybe I have something else that exactly copies MS. How many different diseases are out there that exactly copy MS?
So, if you have the 100% of the symptoms of a disease, do you have the disease? This question needs to be asked of all doctors.
In my observations of students, if they exhibited most or all of the symptoms of a psychological disorder, I believed they had the psychological disorder. Maybe I was wrong.
My MRI's do not show lesions. I don't know what MRI machines I had so I will check this out. Thanks. I was told the MRI's were new, and I had both open and closed, with and without contrast.
Hourly relapses: I always have these PR-MS neurological problems 24/7 since October 2004, but they vary from moderate to severe per hour. Maybe the word relapses is wrong. I never know how I am from one hour to the next.
A neurologist didn't think I had CIDP but he wasn't sure.
Well, you can test me. I am unique. You sound well qualified.
At any point in time, either foot or either leg or either knee or the torso can suddenly give out. I do no have a spinal cord problem. My kness are worn but overall, I do not have knee problems. Thus, I use electric mobility for safety.
Basically, the neurologists I have seen rely on one thing ONLY: they want to see lesions on MRI's, period.
I may have had radiation exposure as a child, which can can bring on ALS or MS later on.
I had a left arm injury and two weeks later, all of my symptoms began. Child birth, a car accident, an injury, stress in a job, etc. can bring on ALS or MS.
Wilson's Disease was ruled out. I have had extensive testing done, including at a MS center. Please note. When I was hospitalized in grave condition in the last year, every test came back normal, all. The cultures done in the lab were all negative. By symptoms only since I was in critical condition in failing health, after not being diagnosed and treated, I was diagnosed with severe sepsis in the blood. Then I was treated for that and in six months, I completely recovered. I am thankful the doctor chanced it and diagnosed me by symptoms only.
Mayo Clinic was looking for spinocerebellar ataxia, which was ruled out of certain ataxias, not all. The only real noticeable thing was that they said my cells were altered or mutated, whatever that means. They didn't explain.
It is possible that if cells have been damaged by radiation that they will not test well in MRI's and lab tests. I don't know. I have not seen any reports of this.
I have not given up. I never will. I will contact universities but I am afraid that tests will still come back negative. Thanks for that suggestion.
I develop new neurological symptoms each month. I am frustrated only. I have noticeable monthly progression. I have since learned I lost all reflexes, all hand grip, all torso muscles, my torso muscles can tighten up, I have torso muscle spasms, and I am getting weaker and weaker each month, melting like the witch in the Wizard of Oz.
The main problems now are swallowing, choking on my own saliva, and some breathing problems, usually nights, (night time oxygen saturation can drop to 80% but I do not have apnea or any sleeping disorder).
If I am flat on my back, or stomach, I cannot move my legs. Each hour, I am worse and worse until I become paralyzed from the neck below, but I can move my arms, (but staggered movements) Thus, I have an electric bed as I cannot be on my back.
If my physical therapist moves my legs with me lying flat on my back, I will develop far greater intensity of current neurological symptoms. I have full recovery upon being sat up.
MS can be discovered in the blood.I have not had this test.
Each hour I sit, my legs get weaker and weaker. Thus, I have to occasionally stand or walk to prevent frozen legs. I can use the walker for short distances and I do water therapy. If I have frozen legs, I eventually recover upon moving around. Sitting in a car, I can freeze up from the neck below. I have full recovery upon some movement.
The sepsis paralyzed me on the right side for six months but now I am fine.
One time, I woke up and I was paralyzed on the right side for most of the day. I did not have a stroke or TIA.
I am not on any medications by my own choice. I am researching what I can take. Steroids and other medications caused heart problems. But my heart is fine.
I am a mystery man. They need to name my disease Professor Hall's Disease.
Professor Hall
FYI: I was a licensed psychologist and special education teacher combined. I worked with high school and college students, including autistic, who had difficulties learning. I worked with students who had a mental illness, ADD, test phobias, difficulties concentrating and memorizing, etc. I also taught expelled students at their homes in all areas and I worked with gang members in jail..
Thank you very kindly for writing. I do appreciate it. Excuse any misspellings.
I just got back from my female 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 had 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.
But I remain cheerful and upbeat. I never complain one bit. Honest.
I am learning that multiple sclerosis is nearly impossible to diagnose. I remain postive through it all. I have learned in my two different monthly MS support groups that some people in thirty plus years never ever got diagnosed!!!, true. I also discovered in my research that some people got diagnosed with MS, ALS, and lupus in their autopsy reports, after they died. After you die, a brain autopsy is the best way to diagnose any illness or any neuromuscular
disease. Maybe in the future we'll have brain transplants? Professor Hall
Thank you very kindly for writing. I do appreciate it. Excuse any misspellings.
I just got back from my female 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 had 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.
But I remain cheerful and upbeat. I never complain one bit. Honest.
I am learning that multiple sclerosis is nearly impossible to diagnose. I remain postive through it all. I have learned in my two different monthly MS support groups that some people in thirty plus years never ever got diagnosed!!!, true. I also discovered in my research that some people got diagnosed with MS, ALS, and lupus in their autopsy reports, after they died. After you die, a brain autopsy is the best way to diagnose any illness or any neuromuscular
disease. Maybe in the future we'll have brain transplants? Professor Hall
You sound absolutely exasperated, and depressed by all of this! So many of us have faced the same difficulty of having a body full of disease, but no clear diagnosis. But it is clear from what you have repeatedly said, that you HAVE NOT been fully worked up for your problems. A spinal tap is extremely useful for the diagnosis of several neurologic diseases, not just MS. Analysis of both the cells and the proteins in the spinal fluid can point toward a diagnosis of many systemic diseases such as Lyme (which is not considered to be a cause of MS by the vast majority of researchers in the area. Yes, I know that some people claim they have this. I remain skeptical), MS, Acute disseminated encephalopathy, and CIDP( Chronic Inflammatory Demyelinating Polyneuropathy), neurosyphillis, HTLV I & II, Wilson's disease, HIV and some of the neurogammopathies. You should also inisist on a proper work up for Lyme, which would include the LP (lumbar puncture) and the fluid sent to Igenex labs for proper analysis.
Which evoked potentials did you have? Also if you have true peripheral neuropathy something would have shown on the nerve/muscle studies.
The MRI's you had - what did they image? Were they done with and without contrast? Have you had the opportunity to get an MRI on the new generation of T3 machines?
If you have as much damage as you describe in only two and a half years as a consequence of PRMS, you would have to have a huge burden of CNS disease. There would have been enough burden to cause cerebral atrophy - actually a loss of brain volume. Was atrophy without lesions seen on the MRI? If not, what prompted the doc to chose a diagnosis of cerebral degeneration? If he helped you obtain disability with an unsubstantiated diagnosis, you are both at risk from government claims of fraud and subsequent retroactive loss of disability payments. He faces losing his license.
Loss of all reflexes, though not impossible in MS, would be more common in the category of CIDP, which could also explain all of the symptoms you describe. Spasticity is more common than flaccid paralysis.
The other thing that you have said repeatedly is that you have "hourly relapses, and monthly progression." This is not consistent with MS. You are saying that averaging every hour you develop a new symptom? You also said you had not had the blood and urine tests for MS. There are no such tests as far as I know.
You have lost all faith in the doctors in your region and in the specialty clinics at the Mayo Clinic in Roshester, and another large diagnostic group there in Gainesville. Are you, then going to try another large diagnostic center in hope for a diagnosis? You seemed absolutely convinced it is PRMS, yet in one of your posts you make it clear that you feel that you had significant and prolonged radiation exposure when you were younger. Do you believe that this has caused a new, neverbefore seen neurologic disease which perfectly mimics MS? You said they documented altered, mutated cells. That is really interesting. How did they determine you have mutated cells? Where were these cells?
Wow, I have never heard that passive manipulation (as by your PT) could precipitate a relapse of MS! I cannot imagine what the physiologic mechanism would be. My post-doctoral work was in Immunology. I have never heard that passive manipulation could incite the immune/inflammatory response. Have you read that this actually happens in MS? Do you have that cite? It would have extreme implications for people with MS who go regularly to physical therapy.
As for the vertigo and tinnitus. These are extremely difficult to diagnose if the answer is not immediately obvious. Especially tinnitus cannot even be tested for. Period. It is a subjective complaint that accompanies many injuries, illnesses. There is also no known treatment for it. I also have had tinnitus of multiple qualities for the last 24 years. There are some therapies to help the victims of tinnitus cope, but no known cure or diagnostic test. Vertigo is also hard to tease out. You said your ENG was normal. Did you also have Computed Posturography and testing for Tullio's Phenomenon - that is "postural destabilization" in response to sudden auditory input or pressure changes? If not, you should see another neuro-otologist and be re-evaluated.
Finally, other than the Disease Altering Meds (Interferon, et al) why can they not give you symptomatic treatment? Meds for pain, vertigo, fatigue. This I truly don't understand. Many meds are used "off-label" in neurology. Even if you had PRMS, it is likely that the disease-altering meds would offer little therapeutically, though some at higher doses are showing a little promise. You say you cannot stay on steroids, even-though they help. Why not? There are many diseases where people remain on steroids lifelong to keep their diseases at bay.
Unless you are at the point of giving up, and your presence here says not, I would recommend that you put together a complete, but succinct timeline of your entire disease progression from day one in 10/04 to the present. Explain your course in short paragraphs. This will make reading much easier. Obtain copies of your entire workup. Then, send a condensed version of this info to the heads of Neurology Departments at major universities and medical centers. I did this in the early 90's when I had an seemingly undiagnosable problem and received wonderfully knowledgable and compassionate replies.
Alternatively, take yourself to one of these centers and start anew. Check ahead and make sure they have acces to the newest gneration of MRI machines. My lesions did not show up until they used the GE T3 (which has a 3 Tesla magnet). As tired as you are from negative tests and incompetent doctors, it is clear that now you must be your own best advocate in finding a diagnosis. Having carefully read all of your post, I am not at all convinced that all avenues have been exhausted.
Good luck, Quix
Which evoked potentials did you have? Also if you have true peripheral neuropathy something would have shown on the nerve/muscle studies.
The MRI's you had - what did they image? Were they done with and without contrast? Have you had the opportunity to get an MRI on the new generation of T3 machines?
If you have as much damage as you describe in only two and a half years as a consequence of PRMS, you would have to have a huge burden of CNS disease. There would have been enough burden to cause cerebral atrophy - actually a loss of brain volume. Was atrophy without lesions seen on the MRI? If not, what prompted the doc to chose a diagnosis of cerebral degeneration? If he helped you obtain disability with an unsubstantiated diagnosis, you are both at risk from government claims of fraud and subsequent retroactive loss of disability payments. He faces losing his license.
Loss of all reflexes, though not impossible in MS, would be more common in the category of CIDP, which could also explain all of the symptoms you describe. Spasticity is more common than flaccid paralysis.
The other thing that you have said repeatedly is that you have "hourly relapses, and monthly progression." This is not consistent with MS. You are saying that averaging every hour you develop a new symptom? You also said you had not had the blood and urine tests for MS. There are no such tests as far as I know.
You have lost all faith in the doctors in your region and in the specialty clinics at the Mayo Clinic in Roshester, and another large diagnostic group there in Gainesville. Are you, then going to try another large diagnostic center in hope for a diagnosis? You seemed absolutely convinced it is PRMS, yet in one of your posts you make it clear that you feel that you had significant and prolonged radiation exposure when you were younger. Do you believe that this has caused a new, neverbefore seen neurologic disease which perfectly mimics MS? You said they documented altered, mutated cells. That is really interesting. How did they determine you have mutated cells? Where were these cells?
Wow, I have never heard that passive manipulation (as by your PT) could precipitate a relapse of MS! I cannot imagine what the physiologic mechanism would be. My post-doctoral work was in Immunology. I have never heard that passive manipulation could incite the immune/inflammatory response. Have you read that this actually happens in MS? Do you have that cite? It would have extreme implications for people with MS who go regularly to physical therapy.
As for the vertigo and tinnitus. These are extremely difficult to diagnose if the answer is not immediately obvious. Especially tinnitus cannot even be tested for. Period. It is a subjective complaint that accompanies many injuries, illnesses. There is also no known treatment for it. I also have had tinnitus of multiple qualities for the last 24 years. There are some therapies to help the victims of tinnitus cope, but no known cure or diagnostic test. Vertigo is also hard to tease out. You said your ENG was normal. Did you also have Computed Posturography and testing for Tullio's Phenomenon - that is "postural destabilization" in response to sudden auditory input or pressure changes? If not, you should see another neuro-otologist and be re-evaluated.
Finally, other than the Disease Altering Meds (Interferon, et al) why can they not give you symptomatic treatment? Meds for pain, vertigo, fatigue. This I truly don't understand. Many meds are used "off-label" in neurology. Even if you had PRMS, it is likely that the disease-altering meds would offer little therapeutically, though some at higher doses are showing a little promise. You say you cannot stay on steroids, even-though they help. Why not? There are many diseases where people remain on steroids lifelong to keep their diseases at bay.
Unless you are at the point of giving up, and your presence here says not, I would recommend that you put together a complete, but succinct timeline of your entire disease progression from day one in 10/04 to the present. Explain your course in short paragraphs. This will make reading much easier. Obtain copies of your entire workup. Then, send a condensed version of this info to the heads of Neurology Departments at major universities and medical centers. I did this in the early 90's when I had an seemingly undiagnosable problem and received wonderfully knowledgable and compassionate replies.
Alternatively, take yourself to one of these centers and start anew. Check ahead and make sure they have acces to the newest gneration of MRI machines. My lesions did not show up until they used the GE T3 (which has a 3 Tesla magnet). As tired as you are from negative tests and incompetent doctors, it is clear that now you must be your own best advocate in finding a diagnosis. Having carefully read all of your post, I am not at all convinced that all avenues have been exhausted.
Good luck, Quix
Hi Professor,
First, I'm simply curious, what subject did you used to teach?
What is frustrating you about not having a diagnosis other than the one that was given to SS? Is it related to available treatment or is it something else?
Have your doctors been able to find any causes for any of your symptoms, or has every single test (MRI or otherwise) come back normal?
I'm currently trying to understand the cause of a persistent headache (which, I know, doesn't even begin to compare with what you've described), so I certainly understand a little of what the search for an answer is like. Especially if there's hope that finding the answer offers a cure.
S~
First, I'm simply curious, what subject did you used to teach?
What is frustrating you about not having a diagnosis other than the one that was given to SS? Is it related to available treatment or is it something else?
Have your doctors been able to find any causes for any of your symptoms, or has every single test (MRI or otherwise) come back normal?
I'm currently trying to understand the cause of a persistent headache (which, I know, doesn't even begin to compare with what you've described), so I certainly understand a little of what the search for an answer is like. Especially if there's hope that finding the answer offers a cure.
S~
You definatly have seen a wide variety of DRs.
MS effects the central nervous system ,it slowly peels off the myelin coating of the nerves,thus when this happens,it allows the myelin to brake through the blood brain barrier, which causes the lesions.
MS effects the nerves,in return can cause havoc with the muscles as in spascticity.
MS and neuromuscular diseases are of seperate entities.
Many MRI machines are not quite capable of seeing all the lesions.Some go years before a DX.
The DX process can be extremely complicated or a person being DX'd in days.It all depends where the lesions are,how big they are,technology.
Has any of your neuro's tried treating the symptoms and going from there?A LP is not a bad test.It can give great insight to which may be occurring.
MS effects the central nervous system ,it slowly peels off the myelin coating of the nerves,thus when this happens,it allows the myelin to brake through the blood brain barrier, which causes the lesions.
MS effects the nerves,in return can cause havoc with the muscles as in spascticity.
MS and neuromuscular diseases are of seperate entities.
Many MRI machines are not quite capable of seeing all the lesions.Some go years before a DX.
The DX process can be extremely complicated or a person being DX'd in days.It all depends where the lesions are,how big they are,technology.
Has any of your neuro's tried treating the symptoms and going from there?A LP is not a bad test.It can give great insight to which may be occurring.
(1) I live near Orlando, FL. (2) I have not had a spinal tap. I have heard pro's and con's. (3) In my case, Lyme Disease MS has not been ruled in or out. I am not confident that Central Florida medicine can diagnose Lyme Disease MS as the diagnostic procedures here are very poor from what I have experienced, and from what I have heard from many people. In some cases, not all, Lyme Disease can cause MS, true. I have met one person with a Lyme Disease MS. But I have not yet met a neurologist here that knows that Lyme Disease can cause MS in some people. (4) When my symptoms first started in October 2004, no one knew what I had. Over a period of two years from my own research, being the book worm that I am, I discovered that I have 100% of the symptoms of Progressive-Relapsing MS, a classic text book case. My Functional Capacity Evaluation done in four hours by a physical therapy team proved that I very likely have MS but the PT's cannot diagnose MS. This was a very comprehensive twenty page objective FCE report. The FCE rated me 100% disabled from the neck below. The FCE was done shortly after my symptoms started. I am now far worse. I am not saying I have MS but I am saying I have 100% of the symptoms of PR-MS and the FCE validates this. My neurologists here do not know what a FCE is, so they did not pay any attention to it. I know MS is very difficult to diagnose but it is disturbing to me that a lot of people with neuromuscular diseases are not diagnosed. While MS has some symptoms that other diseases also have, I have everything that MS can ever cause, even very rare MS symptoms. I have not been diagnosed with MS optic neuritis but I have all of the symptoms, mainly right eye. I don't know of anyone in Florida that can diagnose this MS symptom. No disease can be ruled out if you have 100% of the symptoms of that disease! However, no neurologist I have met knows most or all of the symptoms of any neuromuscular disease, especially MS, (and this includes MS specialists), nor do they care about any symptoms that the patient mentions to the neurologist. The neurologists I have seen do not diagnose by symptoms only. In fact, the neurologists I have seen agree with me that I have 100% of the symptoms of MS, (how can they dispute what I say?), but they insist that I must have something else then MS that exactly duplicates 100% of the symptoms of MS, since my MRI's are always negative. When I asked the neurologists what other neuromuscular disease exactly replicates 100% of MS, they all state that they don't know. But they all state that they believe that one such neuromuscular disease must exist out there, somewhere. (5) My physical therapists, whom are experienced in a wide variety of neuromuscular diseases, are very convinced that I have MS. Again, PT's cannot diagnose. In fact, if my physical therapist lays me on my back, by manipulating my legs, he can bring on MS relapses. If I don't have MS, how can this be explained? I have hourly relapses, with monthly progression. Why? (I am sorry that I am Type A, very formal, a quite dignified, scholarly gentleman, and very intellectual. That is why I am called Professor Hall!) (6) I go to two different MS support groups a month and all of the MS symptoms I have heard from people in the groups, exactly match mine. How can this be explained? Maybe I have something else that exactly duplicates 100% of MS but I don't know what it can be. Do you? However, my MS cannot be ruled in because in Central Florida, a vast majority of neurologists diagnose MS by seeing lesions on MRI's. They usually do not do blood tests and spinal taps. Thus, the neurologists here diagnose by concurring with the radiologist's positive MRI report. Often times, lesions are too tiny to be seen on MRI's. MRI's were never designed to diagnose MS. Instead, MRI's were designed to diagnose strokes, brain cancer, TIA's, and other easy to see brain disorders. If you cannot have MRI's, (such as having metal in the body), you cannot be diagnosed with MS in Florida. As far as I am concerned, MRI's are a very poor way to diagnose MS since so often, the MRI's cannot pick up the lesions. Lesions can come and go. Obviously I have lesions on the brain because I have symptoms associated with lesions on the brain. The neurologists here dispute any diagnosis of MS without a positive MRI, even if you have 100% of the symptoms of MS. (7) The neurologists I see are frustrated with me, in part, because I have gone through ten years of college to teach my beloved students. I can no longer work. The neurologists don't like it when you approach them in an educated fashion. The neurologists I have seen all feel intimidated and threatened by me when I calmly ask logical and sensible questions in my business suit. The neurologists I have seen like stupid, naive, and uneducated patients that they can manipulate. That is, they really like gullable patients, who don't do any neuromuscular research, who do not ask any questions, and who blindly obey the neurologists. (8) Do colds exist? In most cases, you cannot diagnose colds with diagnostic imaging and with lab tests. So, how can the neurologists say that I don't have MS because the MRI's cannot pick up lesions yet the neurologists claim colds exist? (9) I had MRI's and all kinds of testing done by an ENT yet I could never be diagnosed with 24/7 vertigo and ringing of both ears. This is incredible to me. Apparently, Florida cannot diagnose these two disorders. My ringing of the ears is loud and varies in different tones. (10) All of my diagnostic imaging and labs have been negative, including nerve conduction, (although I have noticeable neuropathy on my legs and feet),. MRI's, (although I have specific symptoms associated with brain lesions), ENG's, EEG's, (even though one time, I had a small seizure during one EEG test), and so forth. In my case, every known illness and every known disease, and every known neuromuscular disease has been ruled out, except MS. MS has not been ruled in or out. (Again, Lyme Disease MS was never looked at) (11) My MD came up with my cerebral degenerative diagnosis as an educated guess to satisfy social security, which demanded a diagnosis. (12) I have been to one MS clinic that was absolutely worthless. I have never known before that a certain doctor could be so stupid and get paid. If I acted as incompetent as what I have seen of my medical doctors, I would have been immediately fired as a tenured professor. I cannot believe what I have experienced. Unreal. This is a sad commentary on the field of neurology, espcially in Florida.
Professor Hall
Professor Hall
Your story is overwhelming,you stated that your MRI's came back normal,how did your neuro come up with cerebral degeneration?
How was your optical neuritis diagnosed,usually after time lesions will appear on MRI scans.
Have you had a Lumbar Puncture as this can rule disorders out.
For the vertigo and ringing in your ears have you seen a ENT or a neurOtologist?
Have you had a EMG/NCS to check for neuropathy or a myopathy.
You definatly have neurological symptoms and I'd demand a lyme test,especially Igenix(sp) a lab in California,they test through spinal fluid.
It took me 2 years to get a DX of MS and had every test under and over the sun done.
I just finished my second treatment of Solu-medrol IV infusions in 3 months,I'm hoping to get my MS under control ,as it has effected my legs a great deal.
Professor you keep searching for a DX.Keep pressing this neuro or demand a referral to a MS Clinic or a high tech neurological center.
My prayers are with you.
How was your optical neuritis diagnosed,usually after time lesions will appear on MRI scans.
Have you had a Lumbar Puncture as this can rule disorders out.
For the vertigo and ringing in your ears have you seen a ENT or a neurOtologist?
Have you had a EMG/NCS to check for neuropathy or a myopathy.
You definatly have neurological symptoms and I'd demand a lyme test,especially Igenix(sp) a lab in California,they test through spinal fluid.
It took me 2 years to get a DX of MS and had every test under and over the sun done.
I just finished my second treatment of Solu-medrol IV infusions in 3 months,I'm hoping to get my MS under control ,as it has effected my legs a great deal.
Professor you keep searching for a DX.Keep pressing this neuro or demand a referral to a MS Clinic or a high tech neurological center.
My prayers are with you.
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