My Father's Death and My Fears

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KC13

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All, I recently buried my father who died of *** at 79 after a (thankfully) brief (12 month) struggle with the monster. I don't want to be next, but let me tell you why I think I might be. My story: I am a 40 yo white male. Always had some anxiety issues, (very) stressful jobs, and migraines. About 10 years ago when I was getting out of the military, my left eyelid twitched for about 4 weeks. Docs couldn't figure it out and it eventually stopped, though the outside of my left eye socket has never felt the same (numb?). About 4 years ago was going through brutal divorce/custody thing, started getting nerve pain, tingling, numbness on left side of face (trigem nerve, etc.), down left arm extending to left pinky, down left thigh, left side of knee, down left calf, to left foot. Seemed to change/morph from day to day in terms of intensity and presentation. Migraines picked up as well. Had full neuro workup with 2 x MRI, EMG, and some other nerve conductivity test. All normal (to include some 'normal' slightly bulging discs), started Neurontin 800mg 3x / day. Tried some other things, but with favorable resolution of divorce, nerve pain dissipated. Tapered off Neurontin, kept some on hand as left side nerve 'stuff' would flare up from time to time clearly (to me) associated with stress (job changes, issues at work, in life, etc.). About 6 months ago, left side nerve stuff came back more consistently. An additional symptom, discomfort/tightness in throat started. About 3 months ago, random rare twitching (crawlers and thumpers) and a stiffness/'banding' discomfort started in lower left leg/foot. It has migrated up to calf, then knee. Seems to change daily, but ALWAYS there now. Sometimes left foot feels numb, sometimes tingly, sometimes 'heavy.' Have had buzzing in lips. Have had light cramping in abdomen and back, also in biceps and quads. Painful knotting cramps from time to time in calves. Am back on Neurontin 800mg 3x/day. (Note: Migraines had been avg 1-2 / month, stopped when the latest neuro stuff kicked in - odd?) I admit to measuring (no difference, no apparent change). I admit to strength testing (no weakness, no apparent change) and I admit to standing on left leg and right leg to see if can balance (seems to be harder on left leg than right). I have taken great comfort in this forum, both 4 years ago, and recently. Thank you 1000x over. SO....Having said that, I cannot explain away the left lower leg 'stuff' that NEVER completely goes away. Every day my symptoms are different, both in the leg and otherwise, but the left lower leg (sometimes radiating up into thigh) is ALWAYS feeling 'tight' in one way or another. (Today, for instance, the left side of my face, into my eye socket, down to my lips, down my jaw is 'fired up' with nerve pain and the pressure/stiffness is in the left side of my left calf, extending up into my knee).Please help....Thanks again,Me
 
Me,Have you gone back and gotten a good clinical exam? That is the first thing I would recommend. Not because I am concerned but because you are. The fact that you had this 4 years ago and it dissipated and the fact that it morphs and is all over the place speaks more to this and anxiety related issues combined with some brutal migraines than ALS but I do understand your fear after your dad. The migraines can cause a lot of the facial symptoms you are concerned about. As far as the leg and the twitching I do beleive it is BFS. I have had that banding sensation in my leg around my ankle as a matter of fact. I think the best thing you can do is get a good examination so you can put your mind at ease.Be well,Kit
 
Kit is the doctor so I always agree with her. Also according to kit, neurontin does very little if anything for anxiety. I would suggest starting a good ssri with permission from your doctor obviously. If it is stress and anxiety you should see some major releif in a couple weeks. Even if it isn't 100% anxiety at least some reduction in that area would help you cope with the other stuff. Anxiety can make a symtom that is a 4 turn into a 10 real fast. I know, I live it.
 
Yes, the reassurance from your Doctor or Neurologist will help you tremendously.But I have to agree with Kit, it doesnt sound like you "need" that for anything more than the reassurance. It sounds to me...exactly like you are having what we like to call...a flare up. They suck, they're scary...but maybe you can take just a little bit of comfort in knowing that we all have them from time to time...some flare ups are worse than others...but they can all be very scary and shove us right back to "Anxiety Square One".
 
You don't sound like you will be the exception. Sounds like a typical stress-induced flare-up. If it makes you feel any better, most of us think we are going to be the one person on the board to be diagnosed with the dreaded disease. I know I often have that thought. It's one you have to combat with a hefty dose of reality. You've had twitching for a very long time and by now, you really wouldn't be able to walk. You also have the stress of burying your father after a struggle with the very disease you fear. If that doesn't get you twitching, nothing will! You will be fine, just like the rest of us!I am very sorry to hear about your loss. That has to be incredibly difficult for you and your family.
 
Hey. Read your post and I can understand that these symptoms seem unsettling to you. I've had many of the symptoms you describe, including the throat issue, the long term eye twitch. Read my "oldtimer" post for a runthrough. A neuro told me he thought my anxiety had set off a chain reaction in my nerves which cause all sorts of problems. Most of my symptoms have quieted down now that I've learned to control my anxiety.In any case, whatever is going on with you, your symptoms are not ALS-like at all. All the sensory symptoms point far away from ALS. Plus you have no weakness.
 
The legs are not the same on a human, and one leg is usually stronger than the other. Moreso, the use of the legs isnt the same, nor the balance. What I have learned on this board is that the inherited forms of ALS is pretty rare. (Dont know any stats though). And after 4 years of twitcing without weaknesses, you would be like a world record or something it it was sinister. My best bid is, that you are not a Guiness-book-of-record suffferer. But I fully understand that you pay more attention to your body than average. But fear not. The odds are pretty darn good in your favour.
 
Just adding to what the others have already brilliantly said; complex migraines can cause all KINDS of crazy neurological symptoms. We once had a patient in the hospital with unilateral weakness, he was worked-up and they couldn't figure out the cause. Everything seemed to point to a stroke, but there was no radiographical evidence, no risk factors, he was quite young, and everything neurologically pointed AWAY from that conclusion. He was finally diagnosed with complex migraine. His symptoms just subsided, spontaneously and completely, which is less consistent with a stroke, clinically. Obviously, there is treatment for migraines, as well as bfs, so, as kit suggested, a visit to your doctor is a good next step. Blessings, Sue
 
I want to send a (very) belated THANK YOU!!! :D) with everyone who replied. I have read the replies over and over, even as the tightness in my left ankle, calf, and/or knee and/or thigh remains a constant and the other symptoms (cramping, burning sensation, nerve pain, etc.) morph daily. (As I type this, my left ankle has the banding sensation, my trigem nerve is burning a bit, and my left arm hurts down the side into wrist and down into my pinky and the finger next to it. I have been having trouble typing and seem to be dropping things quite a bit. However, I was actually out dancing for a few hours the other night and though it clearly 'irritated' my left leg and the symptoms were worse the day after, I took comfort in the fact that after 7 months of all of this, if it was ***, I wouldnt probably be dancing like an 18 yo for hours. I will schedule an appointment with my neuro soon, per Kit's advice. Anyway, thanks again. This place is wonderful because of those of you who give so selflessly.
 
I've posted this before. I think there is a link between stresses on the body and the body starting to not function normally.It sounds like your symptoms mostly fire off when you are under a lot of pressure/anxiety/stress/etc.I am sure seeing your father pass away with *** has gotten to you. Maybe if you can come to grips with that, your symptoms will decrease or stop.Have you considered talking to a priest or if that is not your cup of tea, a grief therapy of some type?-43RichyThe43rd
 

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