Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 Hi Everyone: I am a relatively newcomer to this website...and also this nameless motor neuron disease. I have been reading about different doctors and different medications (as well as vitamins) and feel confused and overwhelmed. I don't want to be the kind of patient that roams from doctor to doctor looking for a nonexistent cure and yet, I have a need not to be a passive patient. I read " Lance Armstrong " and how beneficial his active search proved to be. I started with my internist who referred me to a local neurologist who referred me to a neurologist (listed on the ALS website and listed in the New York magazine as a top neurologist) who referred me to Dr. Hiroshi Mitsumoto of Columbia Presbyterian (who's doing research on ALS). Dr. Mitsumoto, after many uncomfortable tests, said that he could not give me a definitive diagnosis other that it is a motor neuron disease and I have to wait and see what develops. Well, when G-d was giving out attributes I skipped the line for " Patience. " I don't know where or what to do! I'm interested in knowing whether anyone else has had the same experience and what they did. Thanx Bebe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 My husband is also seeing Dr. Mitsimoto. He is going for a MR Spectroscopy next week. He has not yet been diagnosed officially. Have you had this test? Any info you could give me would be appreciated. Jo Ann Tobias Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 BeBe, NIH is recruiting patients for a diagnostic study you might be interested in. I understand how frustrating it can be. Being stuck in limbo is no fun. Some neurologist would probably call you PLS and then watch to see if the diagnosis changes. Others aren't comfortable doing that. The criteria for PLS diagnosis involves a wait of 3 to 5 years before making the diagnosis, but that is from symptom onset. ThomsonSolana Beach, CaVisit www.als-pls.organd www.geocities.com/mdmfoo/pls.html Title: Diagnostic Evaluation of Patients with Neuromuscular Diseases Number: 01-N-0149 Summary: This protocol has three purposes: 1) to screen patients with neuromuscular diseases for participation in NINDS's Neuromuscular Diseases Section (NDS) research studies, 2) to train NDS fellows in evaluation of difficult neuromuscular cases, and 3) to provide follow-up for patients who have finished participating in a previous study and not enrolled in another. This study will not use investigational treatments. Patients who 1) have a neuromuscular disorder suitable for a current or future research protocol, 2) present a diagnostic puzzle, or 3) have an unusual manifestation of a more usual neuromuscular condition may be eligible for this study. Neuromuscular disorders may include peripheral neuropathies, myopathies, dystrophies, myasthenia, stiff person syndrome, muscle cramps and pains, myotonias, motor neuron diseases and post-polio syndrome. Participants may undergo the following diagnostic studies: - Blood drawing - No more than 100 ml (less than 4 ounces) of blood will be drawn. - Electromyography (EMG) and nerve conduction studies - EMG measures the electrical activity of muscles by inserting a needle through the skin into a muscle to record the electrical activity. The nerve conduction study evaluates nerve function in the arms and legs by measuring the speed with which nerves conduct electrical impulses. A wire is taped on the skin over a nerve to deliver a small electrical shock and another wire taped to the skin records the impulses. - Muscle and nerve biopsy - Diagnoses and characterizes muscle or nerve problems, such as numbness, weakness, muscle cramps, etc. For the muscle biopsy small piece of muscle tissue about the size of a lima bean is taken from a muscle in the arm or leg for examination under the microscope. For the nerve biopsy a piece of nerve from the ankle is removed. These procedures are done in the operating room under local anesthetic. - Ischemic exercise test - Determines if fatigue after exercise or exercise intolerance and muscle weakness are caused by inability of muscles to effectively use blood sugar-the source of energy for cells. For this test, a small needle is inserted into an arm vein and taped in place, and blood specimens are drawn. Then a tourniquet is placed around the upper arm and the patient squeezes a rubber bulb until he or she either can no longer continue or develops a cramp (this usually occurs within 1- 1 1/2 minutes). After the exercise, the tourniquet is removed and small amounts of blood are drawn through the same needle at various intervals for up to 10 minutes. The total amount of blood drawn for this test will not exceed 40 ml (less than 1- 1 1/2 ounces). Sponsoring Institute: National Institute of Neurological Disorders and Stroke (NINDS) Recruitment Detail Type: Active Accrual Of New Subjects Gender: Male & Female Referral Letter Required: Yes Population Exclusion(s): None Eligibility Criteria: Patients will be eligible by one of the three criteria listed : Have an identifiable neuromuscular disorder that may be suitable for a specific current of future protocol; Present a diagnostic puzzle in spite of the previously performed diagnostic work-up; or Have unusual manifestation of a more usual neuromuscular condition. Patients should be referred by their doctor who will obtain our report and will continue patient care. Special Instructions: Currently Not Provided Contacts: Patient Recruitment and Public Liaison OfficeBuilding 6110 Cloister CourtBethesda, land 20892-4754Toll Free: 1-TTY: (local),1- (toll free)Fax: Electronic Mail:prpl@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 BeBe: I almost had the same experience as you, however, when the neurologist could not find out what was wrong with me, I kept going back to to my original doctor and made sure he knew I was not going to leave it alone till I found out what I had. And eventually I did find a neurologist who was able to give me a diagnosis. Took me 2 1/2 years, but don't get discouraged, as there are so many doctor's who have never heard of PLS and here in New Hampshire, the MDA never heard of it. Can you imagine that? Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 I've found persistence pays off. It is depressing to not know what's going on or to feel that the doctor doesn't know what's going on. In my 8-year search for a diagnosis I could believe in, I learned that doctors are like the rest of us - they really usually only know what they've experienced. It's frustrating, especially since PLS is so rare and really no one thing works for everyone. I actually had heavy Prednisone treatments which knocked out the severe muscle spasms I had - but increased anxiety and fear of falling. Can't take it at all now. I was recently diagnosed with Paget's Disease, too. Went to a rheumatologist who knew less about it than I did! Research and education is the best thing I've done for myself - I now have to find someone who knows something about Pagets and determine if treatment is advisable. This doc just said to forget about it - it wouldn't spread and was really nothing. All the lit I read said it does spread, and the spot is on my left pelvic bone. I have an artificial hip on that side (birth defect) so am concerned that it could cause me problems. The lit I read said it could - the doc said no. What do you believe? I believe I need to get another opinion from someone who knows something more about it. I don't believe that it has to be treated but I want someone who's familiar with the new methods of treatment to tell me yes or no. That's how I've approached PLS - it does get me down sometimes but I am so much better than lots of folks in this group because my symptoms seem relatively mild so I try to count my blessings and keep positive. Re: Digest Number 1149 > Hi Everyone: > I am a relatively newcomer to this website...and also this nameless motor > neuron disease. I have been reading about different doctors and different > medications (as well as vitamins) and feel confused and overwhelmed. > I don't want to be the kind of patient that roams from doctor to doctor > looking for a nonexistent cure and yet, I have a need not to be a passive > patient. I read " Lance Armstrong " and how beneficial his active search proved > to be. > I started with my internist who referred me to a local neurologist who > referred me to a neurologist (listed on the ALS website and listed in the > New York magazine as a top neurologist) who referred me to Dr. Hiroshi > Mitsumoto of Columbia Presbyterian (who's doing research on ALS). Dr. > Mitsumoto, after many uncomfortable tests, said that he could not give me a > definitive diagnosis other that it is a motor neuron disease and I have to > wait and see what develops. > Well, when G-d was giving out attributes I skipped the line for " Patience. " I > don't know where or what to do! > I'm interested in knowing whether anyone else has had the same experience and > what they did. > Thanx > Bebe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Bebe, It took me almost 10 years to get diagnosed. I should qualify that by saying that I made the rounds of neurologists for about the first 2-3 years of my symptoms. All acknowledged that I had a neurological problem, but none of them gave it a name. Since there is really no one test that proves the diagnosis, I think that the time lapse and seeing what happens as far as progression in symptoms helps determine the " nature of the beast " . Then after 10 years (for me) the diagnosis was made. I know how hard it is to wait. I've been there--done that. Don't give up. The group will help support you. Dolores Re: Digest Number 1149 > Hi Everyone: > I am a relatively newcomer to this website...and also this nameless motor > neuron disease. I have been reading about different doctors and different > medications (as well as vitamins) and feel confused and overwhelmed. > I don't want to be the kind of patient that roams from doctor to doctor > looking for a nonexistent cure and yet, I have a need not to be a passive > patient. I read " Lance Armstrong " and how beneficial his active search proved > to be. > I started with my internist who referred me to a local neurologist who > referred me to a neurologist (listed on the ALS website and listed in the > New York magazine as a top neurologist) who referred me to Dr. Hiroshi > Mitsumoto of Columbia Presbyterian (who's doing research on ALS). Dr. > Mitsumoto, after many uncomfortable tests, said that he could not give me a > definitive diagnosis other that it is a motor neuron disease and I have to > wait and see what develops. > Well, when G-d was giving out attributes I skipped the line for " Patience. " I > don't know where or what to do! > I'm interested in knowing whether anyone else has had the same experience and > what they did. > Thanx > Bebe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Jo Ann, Good choice in neuros--Dr. Mitsimoto is a major honcho ALS researcher. An MR spectroscopy is very much like an MRI. In an MRI, you are placed on a table in a long pipe--barely able to fit in. When the machine is turned on, electromagnets are activated. The magnetic field is turned back and forth around (and inside) you. The alternating magnetic field causes the cells in your body to emit very weak radio waves that are picked up by the machine. The machine then converts the radio signals that it receives into a series of images showing the inside of your body. By contrast, an MRS machine converts those radio signals into an image showing the chemical composition of the different areas of your body being scanned. The radiologist reading the images produced will be looking for abnormalities in certain areas of the brain and/or spine to help rule out (or help to confirm) a PLS diagnosis. Bottom line: Your husband is going in an MRI type machine again. But the data it produces will be very useful to his neuro. Although I have had numerous MRI's, I have never had an MRS. A number of PLSers in this group have had MRS's. Did any of you feel that they were useful? Mark Weber > My husband is also seeing Dr. Mitsimoto. He is going for a MR Spectroscopy > next week. He has not yet been diagnosed officially. Have you had this > test? Any info you could give me would be appreciated. Jo Ann Tobias Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Jo Ann, I think I forgot to say that the MR Spectroscopy is used to detect upper motor neuron loss. ThomsonSolana Beach, CaVisit www.als-pls.organd www.geocities.com/mdmfoo/pls.html Re: Digest Number 1149 My husband is also seeing Dr. Mitsimoto. He is going for a MR Spectroscopy next week. He has not yet been diagnosed officially. Have you had this test? Any info you could give me would be appreciated. Jo Ann Tobias Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 I have to agree with you 100%. Doctor's are only people like we are, and experience is the best teacher. Fortunately my neurologist has had 3 other cases of PLS, and I consider myself lucky to have found him. I like you consider myself lucky to have had a mild case of PLS for over 20 years. I hope the reason being a doctor who understood what I had, and was able to guide me (with no false hopes) as to just live my life the best I could and listen to my body, and so far so good. I know how difficult it is to accept our fate, but to me it's something we have to do to exist. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Bebe, I had to go to 13 different doctors to get a DX. I then had to go to Mayo Clinic to get that DX but it was worth it as they could not find any thing wrong with me. At last just read what everyone else does and ask question. I am the type of person that does not take medication very well and can not take strong drugs. Jane Anne King Re: Digest Number 1149 Hi Everyone:I am a relatively newcomer to this website...and also this nameless motor neuron disease. I have been reading about different doctors and different medications (as well as vitamins) and feel confused and overwhelmed.I don't want to be the kind of patient that roams from doctor to doctor looking for a nonexistent cure and yet, I have a need not to be a passive patient. I read "Lance Armstrong" and how beneficial his active search proved to be. I started with my internist who referred me to a local neurologist who referred me to a neurologist (listed on the ALS website and listed in the New York magazine as a top neurologist) who referred me to Dr. Hiroshi Mitsumoto of Columbia Presbyterian (who's doing research on ALS). Dr. Mitsumoto, after many uncomfortable tests, said that he could not give me a definitive diagnosis other that it is a motor neuron disease and I have to wait and see what develops. Well, when G-d was giving out attributes I skipped the line for "Patience." I don't know where or what to do!I'm interested in knowing whether anyone else has had the same experience and what they did.ThanxBebe Quote Link to comment Share on other sites More sharing options...
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