Old 08-23-2009, 06:57 AM #1
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Default For those of you who have been told it might be ALS or you have ALS symptoms...

Here is my story. I have kept a journal for years of my symptoms and found this helpful when new issues would manifest. For the past year I have had several different diagnosis. There has been enzyeme defiency because of low B 12, Folic Acid, Iron, Vit D and severe anemia. When all these were up to normal levels I was thought to have to Pompe's disease or some other metabolic muscle disorder, ALS or myasthenia gravis. My first EMG was normal. I was then referred to Duke for a second opinion. When I first went to Duke I was tested for genetic disorders like Stiffman Syndrome and Paraneoplastic Syndrome because of the rippling muscle spams I had just started having. I have been told at least 5 different diagnosis in the past year alone and it has sent my head spinning and not knowing what to believe except that my symptoms are getting worse. Going to Duke has at least given me hope to finding out exactly what is wrong with me. Just remember it's your health, not theirs and if your doctor won't listen to you go to another one. There are diseases and disorders in the human body that many doctor's will never see in their lifetime, that doesn't mean they don't exist.
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Old 08-23-2009, 07:02 AM #2
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Hi longroad,

you posted in another thread that you were diagnosed with paraneoplastic syndrome. is that the case? I believe that this is a neurological syndrome that usually precedes the diagnosis of cancer, correct? have you also been diagnosed with cancer of some sort?

sorry to hear of your illness.

Sandra
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Old 08-23-2009, 07:17 AM #3
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Yes and no. Not everyone who has the paraneoplastic antibodies has cancer. In some case there have been instances where a cancerous tumor has been removed and the antibodies went away, in other cases no cancer has ever been found, but the antibodies are present. I have had cancer screenings and no tumor has been found. They cannot even begin to treat paraneoplastic syndrome until they rule out a cancer because they have to treat the cancer first ( if there is one). I also discovered when I went in to have surgery last week that they have to treat people with paraneoplastic syndrome different and give them a seretonin blocker shot before they go under so they don't crash on the operating table. Luckily for my the they had seen 2 other cases before me and knew how to prep their patient. I wanted to tell my story because there are several disorders that the symptoms can mimic ALS, until properly diagnosed.
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Old 08-23-2009, 08:19 AM #4
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Interesting. I am playing the waiting game myself for a so-far undiagnosed condition with some ALS symptoms: atrophy, pain, off and on muscle twitching, weakness, fatigue, but a clean EMG.

I hope you get some answers soon.

Sandra
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Old 08-23-2009, 08:53 AM #5
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Sandra,
I know exactly what you are going through. Don't give up and don't let the doctors tell you it's in your head. If I still lived in upstate NY I probably would have not been diagnosed yet. I am fortunate to have found good doctors who know they cannot cure me, but want to at least give me a decent quality of life. The waiting game sucks, meanwhile your symptoms continue to worsen and new ones manifest. I hope you get answers soon as well. If you are not near a facility like Duke, the Mayo Clinic, John Hopkins or any major medical facility I would suggest getting to a Neuroscience clinic at a major facility. Your chances of being diagnosed might be quicker and more accurate. Good luck.
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Old 08-23-2009, 11:28 AM #6
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I agree longroad, I finally feel like things are moving in the right direction now that I have an appt with the Mayo Clinic. They sent me an information packet that is so far and above any type of care that I've gotten from a doctor in the last several years. I finally like I'm going to have a healthcare team that I can trust. That's been a huge relief.
The Mayo Clinic requested that I bring a copy of all of my medical records from the past year and when I went to that doctor that laughed at me about the ALS concerns they claimed they couldn't give me the records from my last visit because they "weren't ready yet". I thought that was pretty dispicable because the receptionist was talking to someone behind the glass that wanted to know who was requesting the records and when they pointed to where I was sitting in the waiting room they told me they couldn't supply the records. The doctor had the nerve to tell me that people that have ALS don't look like me and would only give me the tests after she wrote that it was the patients request and now she doesn't even have the courage to give me the paperwork that says as much. There are some pretty terrible doctors out there and finding a good one that you can trust is HUGE.
Wishing you the best!
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Old 08-23-2009, 02:00 PM #7
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Naeco ... in the U.S., the medical records belong to the patient. No doctor has the legal right to withhold them.

This doctor sounds like such a jerk, I'd be tempted to go up the food chain ... maybe the state medical board, etc., to complain and force the release of the records. (And I bet when you get them, they will read very differently. What doctors put in writing and what they tell patients are sometimes very different things.)

I can't believe the doctor said you don't "look" like you have ALS. But then, the guy who diagnosed me said he knew I had ALS before he came in the room, because he heard me talking and I "sounded" like I had ALS. I also sounded like I was drunk, like I'd had a stroke, like I had Parkinson's, like I had Myasthenia Gravis, etc., etc.

Good luck with the real experts.
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Old 08-23-2009, 04:07 PM #8
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Thanks Beth. I'm going to try to get the records again next week before my appt at the Mayo but I have serious doubts they'll be willing to give them to me, unless I go up the chain like you mentioned. The reason I don't think I'll get them is because she showed me where she wrote that she was listing it as a "patient request" on her paperwork - I guess as a way of throwing it in my face at the time. So I seriously doubt they'll give me a record of that without putting up a big fight. It sucks because I really just wanted the records for no other reason than to have a complete list of my medical care up to this point. But if they don't release the records I'll probably go up the chain just for the chance that it might help someone else from having to go through the same thing in the future.
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Old 08-25-2009, 09:35 AM #9
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They have absolutely no right to refuse you your medical records. The Mayo Clinic or whoever else you get a second opinoin is going to request them as well. I would get a lawyers's advice and see what they tell you to do. Go directly to the office manager and if that doesn't work start your way up the ladder. I make sure that I have all my medical records ( for everything), and a copies of all my x-rays as well ( includiing my mammograms) just for my own personal records, in case I go to a different doctor so I can take them with me. I also keep my own journal of my symptoms because I have found that even the best doctors do not put down everything the patient tells them in their report, or everything they see for that matter. On on visit after a reflex test my leg kicked and I ask my doctor if she saw it and she said yes, I then told her that I had no control over that. When I got a copy of her office notes I saw that she had stated no "involuntary movements noticed". I was a little baffeled because she saw it, I asked her if she noticed it and she said she did, but made no mention of it in her office notes. Good luck and keep fighting for your rights, you shouldn't have to, but for some reason people think they can push others around. Bonnie
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Old 08-27-2009, 07:08 PM #10
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You were right about that Doctor. The report was nothing like my actual visit. They actually wrote that I was "pleasant and cooperative with no acute distress". This was the same visit where I said I was struggling to stay off of disability at work! Maybe I would have gotten my point across if I kicked them in the teeth.

I've learned a lot from this whole experience. From now on, I'm going to be a lot more diligent about finding a good doctor.
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Old 08-27-2009, 07:28 PM #11
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i would just take copies of blood work,regular testing , but,no doc notes i do not like the way comments are wored as i did a breathing test as i do have copd, but i saw the report and i was angry it stated that i was uncorparated lol- i had to walk with the co 2 reader on finger, and pulse rate i did this test every 3 months, and one time i was having a bad day breathing and thinking ahhhh this will show what i really do- i couldnt complete the walk chest was to heavy so -instead a saying patient felt she could do no more and could not complete test they put patient was uncopperated. ( i know spelled wrong so sorry ) so i would just bring regular test results,also it wont cloud other doc's thinking
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Old 09-01-2009, 09:32 AM #12
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I know the feeling. Since I have been aspirating fluids the bases of my lungs have collasped. Last year when I had a breathing test done I was told I was not doing it right because I could not get the numbers they wanted. Comapssionate medical professionals are a rare find these days. If they are ever in our shoes they will be in for a rude awakening.
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