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SRES

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Okay this is the second attempt at writing because my first was interminably long. My question is this: What tests do I ask for next, which direction do I go next with my primary care doctor to rule out ALS or know that it is ALS. I either need to move on away from the "fear of possibility" or if it is ALS, embrace the facts and figure out how to live life going forward.

I am a 47 year-old female in great health until recently—a daily walker getting in a couple of miles a day and going on 8-12 mile hikes once a month with friends.
My most relevant symptoms started in the spring of 2012. I was waking up nightly to very firm contractions in my calves (not painful charley horses) just both calves very tight or sometimes contracting on/ off, on /off. (The year prior to this I'd also been getting intermittent mild pulling sensations in my calves while on walks). During the day, I was getting visible twitches in different spots around my body and began feeling a subtle "electrical" sensation in my feet at times. One day I realized this sensation corresponded to my toes twitching. Seeing my toes moving involuntarily really freaked me out and soon I was down the path of internet searches and learning terms like fasciculation and myokymia, adding up all my past symptoms and worrying about ALS.
In my previous work, I used to call on doctors (including neuros) so I have some medical background and know the system pretty well. I also know what kind of websites are reliable and which are not or are more likely to stir up emotions, so I've been trying to keep my head, but sometimes it's difficult. I DID learn about peripheral nerve hyperexcitability and BFS and have been pinning my hopes on that. But in the last four months things have been getting worse. It's been a real roller coaster ride some days thinking I likely have a horrible neuromuscular disease and another day reassuring myself I've blown it all of out of proportion and it likely has something to do with aging and changing hormones.
Unfortunately I have crappy insurance (catastrophic), so I didn't go to the doctor until December 2012. Blood tests showed no abnormalities (no thyroid issues, no increased inflammation, no diabetes, no renal issues, etc). He referred me to a neuromuscular specialist in town. She performed nerve testing on my left leg (tibial and peroneal nerve). When I expressed concerns about ALS she spent about twenty minutes telling me she did not think I had ALS because if I've had symptoms for over a year I'd likely not be walking or talking by now, etc... (I'd also had some weird throat feelings on and off but wasn't sure if maybe I was just imagining it in my heightened state of awareness). She mentioned that she'd had three colleagues come to her over the years with similar fears and that it's a hard thing to get past sometimes. I tried to take her advice and put it out of my mind, and for awhile I actually felt great relief. I requested a summary of the nerve study. The interpretation stated it was a minimally abnormal study with no widespread evidence of peripheral neuropathy or motor neuron disease. She noted the peroneal nerve amplitude was mildly reduced but a needle examination of the muscle was normal. She suggested I have my vitamin D levels checked.

Within a month of that appointment my symptoms began to ramp up more. Since then the electrical feelings in my feet have become more pronounced and more pervasive in my ankles and calves and sometime behind my knees. The visible twitching isn't as pronounced but I'm almost always feeling something "electrical" going on in my feet and lower legs when at rest and even sometimes when I'm standing. I wake every night with a tight feeling in my legs (though not as firm of contractions as in the past) and feeling the funny electrical feeling in my feet and lower legs. Of course I lay there and worry. In the last few months I've also had some periodic twitching in my butt and the inner thigh muscles, so of course I think, "Crap, this is spreading up my legs."

And now I am now just not walking daily because it seems I'm always getting some weird injury with my ankles especially on my left side. I thought for a while it was possibly age-related tendon and ligament issues – but when I consider it in conjunction with all the twitching, electrical feelings, and tightness in my legs at night I worry. My left ankle hurts a lot now, the inner muscle is swollen and walking aggravates it. I often have a pins and needles sensation on the outer part of my lower calf and a sort of swollen feeling around my ankle (and sometimes under the ball of my foot). Recently I noticed I am often standing on the outer part of my foot and walking that way as well. I just feel like I went from being a normal active woman two years ago to constantly having leg issues, as if I've aged 20 years in two years. I skipped my last hike of the season because I knew with my ankle issues I'd feel like a crippled up mess afterwards.

Sometimes I also feel tiny twitches around my mouth. Over the last month I keep feeling like my uvula is resting on the back of my tongue when my mouth is closed—which it appears to be doing (of course I've checked with a penlight—and doing this kind of stuff makes me feel like some kind of self-obsessed hypochondriac). I wonder, "Well maybe the uvula normally DOES rest on the tongue... or maybe I'm fighting a cold or allergies and my uvula and tonsils are just swollen." Then the feeling lessens some and I put it out of my mind. But now this week I'm really noticing it again. Yesterday I went for a walk after a week off and now today my lower legs feel full and tingly--just weird and sore. This from a person who normally walks two or three miles a day without giving it a second thought.

I went back to my doctor last month (Sept 2013) and asked about other possibilities--including could this still be ALS? He ran similar blood tests and a few others including a Vit D and a test to look for an inflammatory markers, but again everything appears to be in normal ranges. I have not gone back to discuss the results (received them in the mail)—again it's my crappy insurance—I figure I can read blood test results and save myself a $200 visit.

So after sharing all this background information can anyone advise what to do next? I realize I have to be my own advocate... that not all doctors even know what tests to run—that even "specialists" sometimes may not be that skilled or are too quick to diagnosis because they're trained to go with the most obvious. And I realize too that it's still possible this could be something else, or several things going on at once that are not related. I also don't want to lead my doctors to an incorrect diagnosis, but I can't afford wasted appointments with the type of insurance coverage I have either, so I'm trying to be smart about what tests are important and what are not. I just need to figure this out and get this monkey off my back (or accept it).

I am very sorry this still ended up so long. I hesitate even posting as somehow it feels like by doing so I am crossing a line toward a step I don't want to take. Thank you so much for taking the time to read my post and reply with your thoughts. I'm not asking for a diagnosis, just suggestions for what to do next, what types of tests to suggest, or what other possibilities to look for... Again, my sincerest thanks for your time.
 
If you want to pursue your symptoms I think you have to return to your doctor. Make a concise list of your symptoms and the order in which they appeared. Make sure your doctor has all the records from the neuro visit including the report of the EMG. Ask him where you go from there. Ask him what he thinks it could be and what it is not. If he says he does not know then ask him in what direction you should go what specialist what tests. Yes, I understand about the insurance issue but you can't get appropriate answers without seeing a doctor again. Can you get better insurance in January? This is the time of year you can usually change.

You write a lot about things you feel which is usually not the way ALS starts but you have already been told by a neuromuscular specialist it was not ALS and apparently your pcp did not see any red flags in September either. Take comfort in that but if you are not well you need to see someone. In the meantime the more you worry the worse you will feel
Wishing you the best
Nikki
 
If the anxiety and worry is too much, Nikki is right, and I'll just put my vote behind her. Anxiety can be crippling. I have talked to folks whose health anxiety had them locked up in their room, their jobs lost, their families in disarray. It is that important. I'd add to what she said that a decent counselor can be helpful and cheap.

If, however, you are managing and it isn't cutting into your life:

Financially, as a functionally uninsured person, waiting a year would be the best thing you could do. BFS tends to clear up or at least seriously tone down about then, and if you do have some freakish but slow progressive disease, there will be something to look at then. Most tests you would be interested in getting are only good for a year or two. Either way, you'll probably have to get them done again then. In the meantime, go to a PCP if you encounter any dangerous or disabling symptoms, obviously.
 
Thank you both so much for taking the time to reply. Nikki, the idea of a concise list is extremely helpful. I tend to get caught up in the personal side and become too verbose. :) I know very well that doctors have extremely limited time and constantly have to sift the facts from a lot of unimportant details. So your reminder of a dated, concise list provided a light bulb moment. Thank you.

As far as this possibly being BFS and anxiety... I would love for it to be that. In my reading I often came across that ALS does not usually start with twitching so that is reassuring. But an explanation on the BFS site kind of made me worried when the moderator compared twitching in BFS vs. ALS....

"ALS twitches and symptoms usually start in a hand or a foot and will migrate from that point forward progressively and continually... They will NOT be random twitches like BFS... ALS starts in one spot and progresses continually through your body, not at random..."

I've had random twitching as well, but the electrical feeling (low buzz) started in my feet (4/2012) and have become a near constant there and in my ankles and calves now. The visible toe twitching is less frequent, but in the last few months I've been getting sporadic muscle twitches in the larger muscles of my calves, thighs, and glutes.

I'd just really like to understand why this is happening. I do wonder if changing hormones (I'm 47) has anything to do with it. I've read that estrogen and progesterone are "neuroprotective." Interestingly enough the incidence of ALS is higher in men until women reach menopause and then it evens out. As is typical I woke up with extremely tight calves today. I think once I fall asleep my calves just stay in a contracted state all night.

Anyway thank you BOTH for taking the time to respond, I sincerely appreciate it.
 
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