Old 03-24-2015, 12:17 PM #1 (permalink)
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Default Is it possible that I was misdiagnosed 13 years ago? Please help

Hello everyone. My name is Ana. I am new to the forum, but I lingered for a long time at the old braintalk.org forums 13 years ago.
This is my story: In 2001, during a trip to Italy, I noticed that I couldn't pull my luggage. My shoulders and arms felt as if they had lost their strength. Following that, other symptoms showed up: muscle pains, twitches, some slurring of my speech, and clumsiness. I felt that my hands and feet were "thinning", so I started seeing all kinds of doctors for a diagnosis. I saw some of the top neuros in US, 3 of them in Miami, and one in Baltimore. At that time, they did many tests: nerve conduction studies, EMGs, etc, and nothing. I was diagnosed with depression, and given paxil Before the symptoms, I didn't have a reason in the world to be depressed, but after, I have to say, I did feel frustrated and depressed. After much struggle trying to get a diagnosis, I quit seeing doctors in 2003, and decided to let "whatever this was" show itself. My symptoms continued for some time, and then slowed down, having cramps, muscle pains and clumsiness from time to time, but not debilitating. My balance has always been somewhat off, and sometimes I have trouble pronouncing some words. My life was quite normal otherwise.
Fast forward to September 2014, I started developing a new symptom: double vision. In the beginning I thought I had a bad prescription, then it was clear that was not the reason. I visited a neuro ophtalmologist for answers, but he couldn't find any eye disease. Since September, gradually, my muscle twitches have come back, along with the muscle pains, just as before; burning pain throughout my body, pins and needles, and more loss of balance. I am also yawning a lot, and I have abnormal reflexes in my knees. I am very worried. I've heard from some people that they are misdiagnosed for a few years, but their progression has continued until they're finally diagnosed, but I have not heard of anyone whose symptoms went dormant for so many years and then flared. Please share your experiences with me. Thank you. Ana
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Old 03-24-2015, 01:51 PM #2 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

It may be time to revisit a neuromuscular specialist. That way the proper tests can be run. It is a good thing your symptoms haven't progressed for so long, as the average for ALS is 2 to 5 years. But we are not doctors and can't diagnose you.

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Old 03-24-2015, 01:51 PM #3 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

Good news - you still do NOT have any ALS symptoms.

So sorry you would worry about this disease for so long despite all that medical advice and help. You need to go back to your doctors rather than here.
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Old 03-24-2015, 02:39 PM #4 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

I agree with Tillie--I just don't see any ALS in your future.
Your September 2014 symptoms reminded me more of a brain tumor, but I really shouldn't talk as I'm not a doctor. Anyway, I think you really don't have ALS.
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Old 03-24-2015, 04:03 PM #5 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

Doesn't sounds anything like ALS in my opinion. I have never heard of ALS going "dormant". Thirteen years ago? There was no misdiagnosis back then, you would be dead by now if you were misdiagnosed. Sounds more like your anxiety is back, but check with a doctor to see what's going on. Good luck!
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Old 03-24-2015, 06:02 PM #6 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

Thank you for your replies. I had an MRI that ruled out a brain tumor. I am definitely back to the specialist, but wanted to hear if anyone had heard of a similar patient. Now, just like 13 years ago, I have no reason to be anxious. Actually, my life had never been so much in check as it is now. That's why my symptoms are so scary. I know for certain the symptoms are real, I see double and I see the twitching in my arms. I will wait for the doctor opinion and try to be calm, and hope that I don't have to stop driving because of the double vision
Thank you for the inputs. I too hope I don't have ALS
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Old 03-24-2015, 06:13 PM #7 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

Quote:
Originally Posted by 13yearsago View Post
I too hope I don't have ALS
My last reply on this thread.

We don't 'hope' honey, we know you don't as you don't have any ALS symptoms. Good luck in sorting it out with doctors.

It is best to stay off here now as you will only convince yourself of something you cannot have as not even PLS behaves this way. No one has heard of a similar 'patient' in other words.

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Old 03-24-2015, 07:31 PM #8 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

I think of multiple sclerosis or myasthenia gravis with the flares and vision. You need a good neurologist who specializes in neuromuscular diseases! However, its not als!
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Old 03-25-2015, 06:59 AM #9 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

Thank you for the replies. Yesterday I got in contact with an old friend from 13 years ago that has had ALS for 28 years. He was diagnosed when he was 27. He's completely paralyzed, and on a vent. According to him, in the beginning, his progression was so fast that he was paralyzed in just a few years. Then it stopped for years. He says that his ALS comes and goes. I realize that this is not a typical case, but for what I've read, there's nothing really "typical" about ALS. 13 years ago, when I had symptoms every day, I read every article, reasearch, case study that I could, and I talked to many people. I worked at the time in a university medical campus, with access to many doctors, and know some of the most reputable neurologists. ALS is so hard to diagnose because doctors have to follow protocol given the patients nerve conductive studies and EMGs and of course, muscle waste and progression, but what I'm trying to get to is that I believe that it's possible to be a very slow progressor and if the EMG doesn't pick it up, I doubt that you would be diagnosed with the disease. And remember that at some point, I just quit on seeing doctors. Praying that the EMG doesn't pickup anything this time either. Thank you all for your time. It makes me feel a little better to be on this forum. Thank you and God bless.

Mod note. Please read down and see poster clarifies statement that als comes and goes. It meant progression stops and goes. That is, the PALS has plateaus which is a known phenomenon

Last edited by Nikki J : 03-26-2015 at 06:26 AM Reason: Clarification
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Old 03-25-2015, 07:14 AM #10 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

He was paralyzed and then got better? Or hit a plateau. If he has documented ALS that has improved for a time and is documented tell him to contact Dr Bedlack at Duke he is researching this
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Old 03-25-2015, 02:12 PM #11 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

Nikki it says the person in question is completely paralysed on a vent. This is the only reason this person is alive and has no bearing on the symptoms the OP reports.

Can you close this thread? This is not a reply to the OP, just clearing up what was posted for Nikki.
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Old 03-25-2015, 02:35 PM #12 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

I know what it says but apparently there is a claim that a person was paralyzed then improved and was not paralyzed then became paralyzed again. I am giving op a chance to clarify this frankly unbelievable claim of knowledge of another person claiming this. If it is so it should be in the literature and I do not think it is. Someone who is currently vented has clearly been receiving medical care so they did not fly under the radar. Any clinician would be reporting and publishing this
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Old 03-25-2015, 03:38 PM #13 (permalink)
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Thanks Nikki, as always you are very fair and moderate a moderator ... it is an unbelievable claim
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Old 03-26-2015, 12:57 AM #14 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

Perhaps there is a misunderstanding as to what I said. The PALS that I know was diagnosed and progressed rapidly at the beginning, to the point of being on a wheelchair, then paralyzed, then vented. He says that after that his symptoms slowed down, and he didn't notice progress for a number of years. In his own words "My ALS comes and goes" I believe what he means is that his pattern is one of fast progression, then he hits a plateau, and it goes like that as a cycle. His name is Dave, and he is from West Virginia. He does have the care of his loving family. He was determined to see his children grow and he sure did. Both his children are married and have their own children now. He's one of the few that I met from 13 years ago who is still alive.
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Old 03-26-2015, 05:33 AM #15 (permalink)
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Default Re: Is it possible that I was misdiagnosed 13 years ago? Please help

Thank for the clarification. Plateaus definitely happen. What does not happen is getting better which is what it sounded like to me.
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