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ella

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Hi,
I have read lots of posts and find that there are roughly two categories: one- Als related pragmatic questions and two- people who think they might have ALS and are scared and confused (that would include me).
Here is the question: How did you find your Neurologist go about the process of diagnosing you. Did you first get screened for common and treatable conditions. (MG, Parkinsons, Wilson's) common conditions (Multiple sclerosis, myotonic muscular dystrophy) or did you present with clear cut symptoms, highly suggestive of ALS.
For all of us that arrive at this forum ( and we are lucky to have done so) after frantic Google searches of our symtoms - could it be that there are a myrriad of presentations of neuroligical conditions that GOOGLE never heard of, that we may never be diagnosed?
I probalbly share a common sentiment: I just want to know!
Is there a chance to never get diagnosed, yet get continually worse?
Does no diagnosis mean- get on with your life and stop thinking worst case scenarios?
What would be most helpful for me to know: How long since you first sensed something was wrong (what was it) untill you arrived at your diagnosis? Thank You for all of your kind words and understanding since I joined. Ella
 

ltr

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Hi Ella,

You ask a lot of the same questions I have asked over the last 15 months. I fall into the scared and looking for a diagnosis category, as you do. In my case I have been screened for a few other diagnoses first, such as MS, pheochromocytoma, diabetes, thyroid dysfunction and most common ailments like hypomagnesemia, etc. I find that most of the doctors look for the common problems and when they don't find them they kind of shrug their shoulders. That's why getting to a good neuro or als clinic for these kind of symptoms is a necessity. If they rule out als, then you can get rid of that worry. If they diagnose als, then you can prepare. Some of us just have to know what is happening. I have read some posts from people who are in wheelchairs, yet without diagnosis. Reading about them has helped me to come to terms with the fact that I might not find out, but I still have to live life with the problems I am experiencing. This forum has helped me a lot with that. The week I joined I had spent two full days crying and unable to leave the couch. I have gained hope for my future after joining.

I read that you are taking care of a challenged child at home. I am a single mother of 3, so I can try to relate to how hard it is for you, but I think if you can try to not think of the worst case scenario for now you will feel better. I wrote in your other post about trying to get your appt. sooner. I hope you can do that and begin to feel better. Leslie
 

19PAMELAVGIRARD56

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Ella, I first realized something was wrong when my left arm started twitching and having Charlie horses. I thought it was part of my fibromyalgia so I ignored the symtoms until I lost my muscles in said arm. While waiting for my scheduled M.D. appointment I, like you, went online to research my symtoms. I went to the MDA's website and was reading all the signs and conditions of the numerous neurological diseases until I came to ALS. That was me; there it was. On my scheduled doctor's appointment I didn't mention what I have found via the web. He referred me to a neurologist and again I didn't mention my finding. I figured they're the doctors-they can figure it out. You're right in your assumption that the doctors put you through a process of elimation to rule out every other disease that could mock ALS. It took me over two months of tests to finally be diagnosed with ALS. If you do have it, get in touch with the MDA. They have been very helpful to me. I hope I have answered your questions, and good luck to you. Pam
 

Rhonda

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Hi Ella,
In April 2006 I noticed something different about my right hand, 2 of my fingers felt numb
and I noticed a difference in my speech. To me it seemed like I just woke up one morning and it was there. I went to my PCP that month and she sent me to neuro. the next wk.
He sent me over the next few weeks for 4 Mri's and he also did a emg on my arm & hand. He told me he thought I had MND. I guess I was lucky on the fact that my neuro.
came from Emory ALS clinic so he had some experience in that field. He sent me to Emory to see Dr. Glass who is a ALS specialist. I was diagnosed :( with als in June. I guess not having to wait and wonder was a blessing but the diagnoses was heartbreaking. I wish you all the luck in the world, try to find some peace in the storm while you are waiting. There's a song called (I Will Praise You In This Storm) by Casting Crowns that has got me through on some of my toughest days. Take care of yourself & know we are here for you. Love & Prayers, Rhonda
 

liz

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Hi Ella -

Welcome to the forum.

My symptoms started one morning when I noticed a peculiar weakness in my right thumb and forefinger while trying to write with a pen. That continued and when I showed my GP about two months later she said it was arthritis. It continued and got worse with remaining right hand fingers (but nowhere else) involved, more impairment with fine motor coordination. So after about six more months I said to her this is not arthritis it has to be something else and she said maybe carpal tunnel and sent me to a neurologist. From the start, he thought I was a puzzle but nothing seriously wrong. First diagnosed monomelic amyotrophy after lots of test (MRI, neck xrays, EMG). A weird diagnosed because it mostly occurs in young Asian men. Second visit no change so given 6 month follow up appt. About 6 weeks before that appt. I started having trouble with left hand and right leg weakening so when I got to this appt. he suspected MND, sent me to a specialist for 2nd opinion, repeated EMGs but on more limbs then ALS diagnosis confirmed. From first symptom to diagnosed took 2 years. Glad I wasn't worrying about ALS that whole time.

Liz
 

CindyM

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If you count the time I first noticed numbness and tingling in my hands, I've been at this for eighteen months now. Like Liz, I went along with arthritis and pinched nerves and carpel tunnel and took treatment for all. It was my Physical Therapist and my Chiropractor who first raised an alarm. Then the neurologist told me he was very concerned. A second neuro actually called me at home and, me being off at a conference, told Lee that they were all worried about me.

I finally figured out that the thing the Docs were worried about was probably serious, and started looking up stuff on the internet in July of 06. I guessed MS and asked my PC if this is what I had. That was the first time anyone mentioned ALS to me. My first reaction was fear, of course, but then I sat down and made a financial and life plan for this condition and that helps me to feel in control. I figure, even if I turn out to be healthy and able to live a long life, there is nothing wrong with having all your affairs in order.
 

joejoe

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My first symptoms started in november of 2004,and finally got a diagnosed in Jan of 2007. 2yrs,2mos a very long haul.My advice keep your head on straight and keep living.Joe
 

CindyM

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Good advice JoeJoe. And thanks for sharing. I was about to consider myself an overwrought ninny if they don't find anything on my next emg when I go on Tuesday.

May I ask how things are now? Are you still working? Had to give up a lot of tasks? Just curious. Please don't feel the need to unburden if you don't wish to.
Cindy
 

Mike27

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ella said:
Here is the question: How did you find your Neurologist go about the process of diagnosing you. Did you first get screened for common and treatable conditions. (MG, Parkinsons, Wilson's) common conditions (Multiple sclerosis, myotonic muscular dystrophy) or did you present with clear cut symptoms, highly suggestive of ALS.
Hi and welcome Ella,
For me, like others here, I had a couple of symptoms of some nerve problems. My GP thought I might have pinched some nerves from carrying a rucksack in my army days. He sent me to a Neuro.

The Neuro ran some tests and started eliminating certain conditions. There is no direct test for ALS, rather it's more a process of elimination. When he said it might be MND (or ALS) I immediately began to look it up in medical journals. This led to nothing more than scaring the absolute crap out of me! (Apologies for language) I won't tell you to not investigate the problem, I'm saying be careful.

An important point is to seek second opinions. After my Neuro said it was MND, he sent me to another to confirm. Then I requested another, and a fourth.
The thing is that there are so many diseases that mimic or are very similar (in certain aspects) to ALS that it is important to be sure.
Is there a chance to never get diagnosed, yet get continually worse?
To be honest, I highly doubt it. If there is something wrong a good Neuro will find out the problem.
Does no diagnosis mean- get on with your life and stop thinking worst case scenarios?
This is the most difficult thing of all, whether it's ALS, cancer, diabetes or anyother disease.
Everyone will go through the grieving process, it's human nature. But once you accept that a disease is a part of your life, you can stop the battle against it and adapt to any change as it comes.

If a man loses a leg in an accident, he has two choices. He can either feel sorry for his situation and sink into a well of depression on something he can't control anyway, or he can adapt.
ALS is the same for us. We adapt as our bodies change and carry on with the realization that this is only a bump in our lives, it isn't the whole life.

I'm of a belief that we are spiritual souls having a human experience. Disease, unfortunatley, is a part of it, but it doesn't have to be the whole part.

I hope this helped somewhat.

Cheers and good luck!
 

quadbliss

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Beautifully articulated Mike!;)
 
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