Finding Hope After Fear

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BomyBombbom

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Hello people.Boy, am I glad I found this forum. I've been lurking over at the als forums for about a month and I just get more and more freaked out every day. I guess a lot of you guys have been down that road too. To those of you that have managed to stay away though – congratulations, and need I add, keep your abstinence up.Here's my story, if you care to plow through this wall off text:I have been having multiple symptoms that mimic als or ms or god knows what for about four months. It started out with testicle pain(!), then percieved weakness in my right leg and arm, along with burning low back pain and hip pain. An overused tired sensation in the leg. The symptoms flung me into a state of panic. I rushed around to the doctor's and everyone I knew, screaming "cancer!" "Please help!" I couldn't sleep. I couldn't eat. I lost 15 pounds in a month. I got ultrasound, bloodwork, x-rays and lumbar MRI. No cancer. I popped crazy ammounts of benzos for about three weeks until I had to quit because I thought I was going to loose my mind. One night, in the middle of all this, I had sort of like an attack of stange symptoms. Muscle twitching, a burning feeling in muscles in the back, joint aches, stabbing and cramping chest pain, profound sweating. I make it out to sound very dramatic. This is not really the case: I had no fever, and every symptom was mild in itself – it was the fact that they all came at the same time. I got really scared. It happened once or twice more after that, and the chest pains came back every night for about two weeks. The thing that really stuck around, though, was the twitching. Along with the leg symptoms and the right arm, later joined by similar percieverd weakness in the left arm it soon led me to googling als, and naturally freaking out again. Then I noticed my jaw got really tired when I spoke, and I found it hard to articulate certain words. I also felt my soft palate sagging at the back of the mouth creating snoring sounds and a feeling of something stuck in the back of the throat, making speaking even harder. Also there was tooth marks on the sides of my tongue. It's s social handicap I can tell you, and sometimes I feel there's no doubt I have als.But ...My doctor's theory is anxiety, he thinks I'm a big heap of worry and since none of my symptoms are possible to observe by just looking at me, or even doing the basic exam, there's nothing I can say to make him deviate from that track. He did, reluctantly, refer me to a neurologist. But the waiting time here in Sweden is rediculous, and my appointment is several months ahead. In the meantime I have decided to roll with the doc and try out his theory. Which explains my precense here. My new, benign scenario looks like this: PINCHED NERVE: The leg/testicle/back-issues are due to a pinched nerve. During the time the symptoms started I was having sort of a life crisis and was perhaps depressed. This enhanced the symptoms and also made me worry about them more. (My CBT therapist explained this to me: It appears that oftentimes when people have issues in their life that they should take care of, but for some reason find themself powerless to do so, they focus on – or even create – some other issue to focus on instead. This is how somatoform disorders work.) I started doing some back exercises last week and since then at least the back pain disappeared. The leg issue persists unfortunately.ANXIETY: By the time the anxiety had risen to a certain level all kinds of symptoms started to appear. I won't go over them again, but given my mental state at the time I wouldn't rule out the anxiety being behind most of it. BENZOS: Twitches, of course, are debatable. It is unfortunate that I started getting these, and while anxiety perhaps cannot account fot these on it's own, I guess benzo and benzo withdrawal could explain a thing or two. Anyway. Now I have BFS. IMAGINATION: What about the arm weakness? Well, it's mild, and while it's always in the same places and sometimes very convincing, I have days when I don't really think of it al all. I have decided to give it the benefit of the doubt. I'm not really weak. I just get exhausted sometimes.TENSION: Then there's the speech issue. That is more problematic, and also what's giving me the most trouble. But since no one other than me has noticed anything It cannot be that bad. I suppose I get a tired jaw from clenching. Also problems like this tend to get worse when you focus on them. I constantly swallow and clear my throat. That may cause the soft palate to sag. It also doesn't sag all the time. Only from time to time. And the scalloped tounge is from a habit I have noticed – I tend to suck it in between the teeth when I sleep.I also tend to think that the rather global nature of the symptoms (right leg, right arm, left arm, chest, mouth) in four months is not really typical of als, especially since all symptoms are rather mild.So there you have it. My attempt at positive thinking. What do you think? Can I make it stick? Is there anything else you can add that will make me believe in this more? Has anyone had simlar experiences and had the symptoms improve or turned up with a clean neuro exam?
 
It's funny you mention the testicle pain. I have had the exact same thing, off and on. In fact for me, that is a much more bothersome symptom than the random twitching and aching. Sometimes it's the side of my right testicle, sometimes it is the side of my left. But it is never the two of them at the same time. I even had an ultrasound and they said there were no physical problems. Just like you, I have chalked it up to either posture or a pinched nerve. Weird.As for the rest of your symptoms, I think you are dead on in how the multitude of symptoms could not possibly be ALS. Remember, ALS is a very rare disease. It presents in a very specific manner and generally in one specific place. You wouldn't just get random jaw soreness, leg twitching, and testicle pain. In your case (the all over body symptoms), instead of ALS, I think you would suspect one of five things. It's probably either cancer, a virus (or post-viral body reaction), anxiety/stress, bad body posture, or a random auto immune condition. And since your bloodwork has already ruled out cancer (which was the most unlikely one anyway), you're left with four more much more palatable choices. That's the sort of logic I have always used to reassure myself when it comes to my symptoms. Once you rule out all the big stuff, what's left is much easier (mentally) to deal with. At that point, you're just trying to get a handle on symptom management.You should read a book or essay on Lou Gehrig (a famous American baseball player who had ALS in the 1930's) sometimes. You will see that his issues were WAY worse than anything we have ever had on this board. He had issues where he couldn't lift his feet while walking. He would just slide them across the ground like he was a zombie. It was immediately noticeable and everyone who saw this knew something was wrong with him. Not to mention the fact that he would repeatedly fall down and had a hard time getting up. Because as the experts (Alonzo, etc) have said many times on this board, ALS doesn't mess around with you. It doesn't just linger in tiny little twitches, it doesn't just show up in a tiny lip spasm. One day you just can't walk to the mailbox. Everyone around you can see it. And it never gets better. So take heart in the fact that your symptoms are A) all over, B) somewhat minor, and C) come and go. Although luckily it sounds like you have already come to that logic on your own.One of the problems with the "ALS panic" stage we all go through is that we have no way to filter the information we read on the internet. We just read something small like "twitches mean ALS" and we all freak out. But we have no idea how a medical person would explain that to us in English. Doctors speak a whole different language than we do. If you want an example of this, here's a story. When my symptoms first started popping up (which are similar to yours), I was convinced that I had MS. I completely self diagnosed myself. I was convinced that I was in the first stage of an MS attack, and that my body was going haywire. I mean, come on, I had read about MS attacks on the internet. I knew exactly what was going on. So I went to my neuro. He said clean MRI = no MS. I argued with him. I said, wait, couldn't this be an MS attack? He said no. I asked, "Well what does an MS attack look like?" He just sighed and said, "Mario, an MS attack would be something like 'I haven't been able to feel my legs for 6 months.'" So that shut me up pretty good. Remember, we have no idea what "medical information on the internet" is supposed to mean if we don't have educational context. If your doctor says you are fine, then you are fine. Even if you do get sore testicles once in a while. :D) Hope this helps!-MarioP.S. And if you're curious, I'm not entirely sure there has been one person on this site who has ever NOT had a clean neuro exam. I have basically the exact same symptoms as you, and all my tests have been fine. I just eventually learned not to care about the twitches. To me, twitches don't equal dying muscle, they equal healing muscle. I think that is my muscles (or potassium channels) just trying to fix themselves. *shrug*
 
Wow, what a response. Thank you! It feels very profound and thought through. After I got through the cancer scare (I thought I had mets on the spine, which an MRI disprooved) I started obsessing about MS too. I've somehow come to the conclusion that I don't have MS. Like you said, symptoms of MS don't really creep up on you like that. II started reading about als almost as a joke. I didn't really know anything about it, only that it was a terrible disease. God, I regret ever doing that. I wonder what symptoms I would have if I hadn't done that. Would they be different? Would they be gone? Would they be the same? Well, as things turned out I have read quite a lot about als since then, and I know enough to know that reading about it only gives me more anxiety. So I try not to. The simple fact is, there is as much reassuring information as there is scary information. I totally agree with you about self diagnosis and Dr Google. The funny thing is we google symptoms for reassurance and a lot of the time we get that. But like a bad gambler we're never satisfied. We spin the wheel again, and then again, until we have finally found all the exceptions and what ifs and worst cases. And there we stand, completely stripped of self confidence and peace of mind.I have actually fund some peace of mind lately. I have a neuro appt late january and my doctor won't hear of my symptoms. So I decided to just let it go, because I cannot let this thing steal 3 more months of my life. It's working somewhat. My anxiety peaks in the mornings but it's gone when I go to bed at night. I sleep well.But this jaw fatigue is driving me crazy. Not only because it's a could be als symptom, but also because it impairs my speech. It has to go away in a couple weeks or I don't know wha to do. TMJ? Maybe, but I have no pain. I just get tired.
 
Well remember, there are muscles in your jaw just like there are muscles everywhere else. If your thighs and legs can get tired, your mouth can get tired too. There's not much difference. It's the muscles you use the most that will be most affected by fatigue. You don't even realize how much you move your mouth until you start to pay attention to it.
 
I thought I would chime in on the testicle pain problem. I've this problem for a long time and would have to bet its unrealted to bfs. There is a condition called prostatitis which in a nut shell is inflamation of the tube that carries fluid from your prostate to your testicle that normally occurs on one side. There are a few causes for it, not trying to give you something else to worry about but this is most often caused by nothing to worrysome. Caffine, spicey food are none to make it worse. The second urologist I saw after seeing a bum for over two years that had me on enough antibiotics to kill a horse (this is the secpnd Dr' words) told me the best way to ease the pain is to 1) cut back / out on caffine (which I havnt, lol)2) cut back on spicey foods 3) soak in a hot bath for atleast 20 mins per night and (not to offend anyone) ejactulate after soaking. The warm water help opens the passages in the prostate and the ejaculation clears the fluid.4) Take ibuprofen (not exceesivly) to help with inflamationYou can try this and see if it helps you, it did me after years of exposing myself to unneeded antibiotics
 
Yeah luckily I've never been on antibiotics or anything else. I don't really believe in drugs, so for me that has never been a problem. The testicle thing is annoying but yeah like you said it's probably even not related to BFS. I have also heard of something called "nutcracker syndrome", which is related to pinched arteries, thus restricting bloodflow and causing pain. In any case, this isn't really related to BFS (it's more posture related than anything) so I'll shut up now. :)
 
The testicle thing is gone now. After I took an ultrasound it disappeared. I think it was the back pain radiating. I haven't felt the back pain in a while either. I had this really freaky burning low back pain which felt very sinister and malignant. Once I started worrying about als I clung to that back pain like a baby to a mother's tit because it was conflicting with the als scenario. But then I started doing a back exercise using a machine in the gym and the burning pain hasn't returned since. Leaving me with pure als symptoms just to spite me. It actually make me laugh.
 
Hope I don't get in trouble for bumping this very old thread... but I HAVE to chime in about the testicle issue. This has been hammering me for about 3 weeks. It woke me up in the middle of the night... kind of a sharp throbbing pain in the right testicle. When I woke up my right hip, knee and foot were very sore. I swear I could feel twitches in my testicular area too. Anyways, this was rather persistent for about 10 days. Then, I had two great days that were essentially pain free. Prior to those few good days, I went out after work for a few drinks, wife and I had sex. All good. Then, it came back on the left side 2 days later. I said enough was enough and made an appointment with my doctor. By the time I got in 5 days later, the pain had drastically reduced. When it's at its worst, I can't even sit. Very difficult to drive. I'm basically reclined all the way back. All I can do is stand or lay down to prevent any pressure / discomfort. Thankfully I have couches at work. My doctor did a testicular exam a few days ago... couldn't find anything abnormal. I was examining myself very often and couldn't find anything wrong either. She didn't give it a name, but said it could be anything from a bladder infection, to a kidney stone I may have passed, to just general inflammation. Said something serious wouldn't wax and wane this dramatically. I had a good few past days. But, today the pain is pretty gnarly and more widespread... lower abdomen, obliques, groin area in general. Also recently did a blood panel and my ANA came back negative... so she doesn't think lupus (I've had thyroid pain, lymph node pain, kidney / adrenal area pain, testicular pain). The muscle twitching and pain doesn't bother me, but when I feel like my organs are being attacked I get worried. Anyways, stress feels like it sets it off too. I think we should all quit our jobs, pool our savings, move to an island, and start a de-stress community.
 
Its so interesting how this sh*t starts the same with a lot of us. Like you it hit me all at once. I remember being at Subway and literally not having the cognitive / verbal ability to articulate what toppings I wanted on my sandwich. I couldn't get the words out. Scared the hell out of me. Simultaneously i was dropping things all the time. Same day, same moment at Subway - picked up my bag of chips and just dropped them on the floor. Then a couple weeks of severe joint pain. Like you - i started out with something in the groin - mine was a painful enlarged lymph node just to the right of my testicle - and along with that pain in the testicle. Then the twitching. On a dime. And it never went away. Something breaks. Maybe something viral. Bacterial. Its hard to know. I had all normal MRI's and tests too, except for CMV (cytomegalovirus) recent infection. I had recently been with a girl who I wouldn't say was the most sexually innocent. Not by a long shot. And there was some fluid exchange. Probably a lot. And then all of this. But honestly who knows. If it was CMV then everyone here should also have CMV and that hasn't been the case. In any case, you're in good company. Rest assured that you're going to be out living your life in awhile and popping in here just to see what's new with everyone - because you're perfectly fine 5 years from now. Something in our anxiety system / pituitary axis / hypothalamus breaks. This possibly results in nonstop assault of stress hormones that have only one effect: Damaging numerous systems in your body. They are only supposed to be secreted for a short burst. Not every 10 minutes for weeks and weeks. They damage nerves, muscles, the brain, the gut, the heart, and every system in our bodies. Truly the one thing you can worry about with BFS: That your worrying is going to kill you earlier than anything else will. Stress plays an insane role in long term chronic disease. It creates an inflammatory, damaged state that promotes cancer and every other disease in the book 10-20 years down the line. So eliminating your stress needs to be your number one priority right now. My signature link is a monstrous mess of ways that I went about doing this for myself. If you want to subject yourself to my inability to keep sh*t concise :)But rest assured you're fine. Now begin a life changing protocol of stress reduction and create an environment of complete *calm* for yourself. Ride out the endless waves of new symptoms that WILL come ... and go ... and give your body time to heal. Expect that every 3 weeks you're going to have a new symptom that is EXACTLY what "X" disease presents as. BFS is the "great imitator". That's why its such a mind f... We get symptoms that are identical to major diseases, and its like we cycle through them on a bi-monthly basis. They come ... screw with your head for a couple weeks ... and then disappear. Meanwhile your doctor thinks you're a nutjob. But screw doctors. If they were worth their degree, they'd be doing something more than treating us like hypochondriacs. There is a lot you can do starting today. -B
 

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