Post Edited By Moderator (Gretchen1) : 3/20/2009 4:44:03 PM (GMT-6)
ha ha....I fell out when I came back to check this thread, I promise you I know how to spell O P R A H...lol!!!
(head pain and a 5month old baby-see what happens! ha ha)
Hehehe, I thought the same thing. He did not discuss the fact that he uses some MM for pain management.
I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!
Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)
Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV
We have no crashers here.....only new friends. You are always welcome here. You asked "Is it possible to go years with MS without ever getting a diagnosis?" YES!! It takes most people years to get a diagnosis. It is a very tricky disease to diagnose due to the fact that it mimics so many other diseases.
Good luck and you are always welcome here.
Gretchen is right, many people with MS wait years to be diagnosed. It took me four years, but I know others have waited longer. It is a very frustrating process and the key is to be persistent. Sometimes it takes visits with many different doctors before you find one who is willing to take you seriously and pursue all avenues to figure out what is going on with you. One thing you can do is keep track of your symptoms: type, frequency, etc. so that your doctor has something to work with. You might not have MS, but obviously something is going on, and you need to keep pursuing this until you get some answers. God bless.
Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).
You are right, being persistent is easier said than done. I am definitely better at saying it.
I just thought you might be interested...I was pestering doctors for two years about my symptoms, to no avail. I finally gave up when my neurologist only wanted to treat my migraines-and continued to ignore my walking difficulty and cerebellar atrophy (hello! My brain is deteriorating!).
I went two years without seeing a doctor, even for the flu. Eventually I found a family doctor I liked and she forced me to see a new neurologist when I developed foot drop. I am so grateful. The new neurologist ordered a spinal MRI and within a month I had a diagnosis, orders for med's to slow down the MS, and med's to help improve my symptoms.
My point is, I know it stinks when you can't get answers, but you will never get them if you give up. It may take 20 different doctors (I pray it's far less), but eventually you will get this figured out.
Have you tried going to your primary care doctor (PCM) when your symptoms flare up? You should be able to get a regular doctor appointment fairly quickly, then you will have a witness for your symptoms. Your PCM may also be able to get you in quicker with the neurologist by calling doctor to doctor. I was able to get an appointment in two weeks when my regular doctor called and set it up.
diana30 I have been meaning to reply to your post but have had a small medical crisis I have been dealing with. Wednesday night I started having severe mid back pain, seen my Docs nurse clinician yesterday and ended up in ER, now they are at odds as to whether I have a Kidney infection or the thorasic disc in my back are causing me problems. The full cultures are not back yet but I am on antibotics, and the Solumedrol pac is on hold! It is funny though because, I have been having swallowing problems the last two weeks along with the numbness and tingling in my legs and feet, heck even the constipation has been back ( I know that might sound funny but I have ulcertive colitis, and constipation is one thing I don't ever have problems with! Except when I start have all the other neuro stuff!) Anyway now I have such terrible pain in kidney area I can't hardly walk or stand, heck any movement is a real problem!!. I don't know if any of this is connected or not, but the pain sure came out of no where, and I hadn't even done anything that would cause it! Such is life I guess!
I have made an appointment with my neurologist its the 29th of April, he is new I seen him the first time the end of December. He is the one who sent me to Rush movement disorder clinic in Chicago. He was right I don't have Parkinsons, and they have weaned me off the Parkinsons meds that I have been on for the last two years. He has their report now so maybe he will have some suggestion as to what needs to be done next.
I have had MRI's done of my back before, none real recently, I do have degenerative disc disease, nothing has ever been said about anything else though. I do know the Doctors at Rush said I should have new ones done on my brain, and my spine because the others are so old. With my thorasic MRI being the newest and that is at least 3 years old. I have had only one of my brain and that was near ten years ago, and there was a dispute over that, the neuropsych said I had had mini strokes, and the neurologist said the spots weren't anything, the guy reading the MRI left it open, as to what it was. As he said mini strokes with a question mark and suggesting the Doctors determine what it is. ??????
I checked out that web site, it kind of disturbed me a little, so much of that stuff listed I have, the leg and feet spasms at night, those are pure H*** and I did not know about urinary incontinence I know the treatment for sleep apnea took care of my nocturia, but during the day when the urge strikes to go I better go right that split second because if I don't well let's just put it this way,.... I go! One of the things that really bothers me is I get these symptoms and then they go away, they always come back though, but you just never know when! I don't know how most people are but for me I start questioning myself sometimes, I mean over the years a couple of the Docs I've had either blew me off like my symptoms weren't important, or they made me feel like I was nut case and it ws all in my head! Like that Doc I just told you about! Maybe I didn't say that right but hopefully you know what I mean! Anyway I sure hope my new neuro will be able to help me!
Thanks again for all the info Gretchen1
I am glad you have an appointment with the new neuro. You might be surprised, doctors have gotten smarter since the time when you saw your first neuro, so the right doctor should know what tests to run and how to interpret them. A piece of advice-get copies of ALL test results. You have already learned that all doctors interpret things differently, so it is always a good idea to have the reports at your disposable for the sake of second/third opinions. It can also help you know when to be persistent. If you know that there is a specific area of questionability on your MRI, you will know to keep pestering doctors to find out the cause.
I was thinking about your previous posts, and I can't remember where I saw it, but I did read about someone with MS who had trouble swallowing. He had to eat a small bite of applesauce before meals to let his body know it was time to eat. I don't quite understand it, but it was a doctor who told him how to deal with it.
With regards to your sleep apnea, it is possible that it is caused by MS, but then, you might just have sleep apnea. It is very confusing, even doctors can't figure out how everything is related. One thing I have learned is that some of us just seem to have every health problem under the sun. Some of them can be related specifically to MS, but some of them can't. I have: sleep apnea, degenerative disc disease, Hashimoto's Thyroiditis, IBS-D, MS...need I go on? I work with my family doctor and my neuro, soon to be a urologist and an endocrinologist as well; we try to figure out what things are caused by the MS, and the other stuff we just treat as separate entities.