Bobnnat

Ovarian cancer was rare in women aged 25 to 29, who had a rate of 2.4 new cases per 100,000. Thats less than 1 case in every 40,000 women in that age range, Linnox.

All good advice, and I’ll add this. About 6 months ago, I was kneeling on my bed putting pressure on my tight arm. I was in an awkward position, and for about 45 minutes. It was sore when I got up from that position, and a bit later, I noticed that my right upper arm had a tremor every time I raised it in a certain position. It eventually lessened and went away. I had obviously disturbed the nerves and that’s how they reacted. Seems something similar with you. Causes and effect. NOT ALS.

I agree with Ironman. You’ve been on high alert ever since your diagnosis. Rather than accept that it was caught early, I’m assuming Stage 1 and moving on with your life, you’re assuming that every normal or oddity that occurs (to everyone) is sinister in nature. Don’t get me wrong, I understand that and wonder how I, as one with HA would react in such a situation. I guess I would eventually come to the realization that I need to move on with my life, with my loved ones and persevere. After all, what’s the alternative, being miserable every day? We are here for you Ryn. I might also suggest that you visit anxietycommunity .com which is much more active than this site. Between these two sites you should get good and timely responses when you post. Also, like this site in its heyday, the other site is full of good caring people, like Ironman. Bob

Oily residue is common. I get it on occasion. Means nothing. Like Ironman said, when you get a cancer dx they do scans to assure no spread occurred. Plus as long as the margins they took are clear, and I believe they get the path report on that while you’re still under, then spread is not possible. It OK to be sad and scared. BUT and I mean this with peace and love, the pity party will need to come to an end. Sounds like early stage, good cure numbers. Just do what the docs say, of course keep your follow ups, eat well, stay hydrated, take any meds they Rx.

Never received your DM. Either of you feel free. I’ll be looking for it. I’m more on anxietycommunity.com these days. Bob

At 26 CC is less than 1 in 50,000. People who do get it typically have a genetic condition called Lynch syndrome. I’ll spare the details, but if you had that, it would already be very obvious to you and your doc and would have been discovered long ago. I’d suggest do your best to let it go.

Hi JL. Certainly being pregnant brings out the hormones, so be on the lookout for false alarms and HA flare ups. The brain and spinal MRI are the gold standard to diagnose MS, and you had those feelings before 2019 so you’re A-OK. Plus those are commonplace symptoms of anxiety. Congrats on the pending new arrival!

I think you’re correct, sounds like a boil. They are infected ingrown hairs and occur in areas like the groin. If it doesn’t heal in a few days to a week, I’d see a doctor as it may need either an ointment or antibiotic to help it along.

I’ll just add that ALS in a 15 year old would make the medical books worldwide. There is 0.0000000% chance you have that and as Goldy said, 100% chance you have anxiety, which I wouldn’t wish on my worst enemy.

Yes I do. Very common. Annoying but harmless

I as well have been down this rabbit hole, the last time only recently. I had severe twitching in my right bicep area that just wouldn’t go away. I kept strength testing which ended up causing pain. I eventually went to my doctor and she nodded saying she has had MANY patients with twitching, some like me in specific areas, others widespread. She said it typically seems to go away after about 3 months. That calmed me down and sure enough it went away a month or so later. Check out anxietycentre.com or .ca don’t recall which and look up twitching. Listen to the clip of Jim Folk, the site creator describing his experience as an an anxiety patient. Finally, at 37 and female ALS is extremely rare, so the rarest of a rare disease.

For what it’s worth, I saw my doctor with a HA fear a few months back. After examining me she shook her head and rather succinctly said “My God Bob, not everything you see or feel is stage 4 cancer!”. Made me think…at least for a while.

JP please go to this site: anxietycentre.ca Look up your symptoms on that site. It might be easier to go to Google and use these key word: anxiety, whatever symptom you fear, and Folk who is the sites owner you might say. It’s an incredible free site. For I believe $5 per month, payable monthly then stop, you get access to an amazing amount of additional info. At your age ALS is literally 1 in a million, and then add to that bulbar which is an unusual presentation. Please do this for yourself, your wife and child. I know all too well how frustrating it can be for the spouse. My wife has also just had it every time I bring up a fear, even one I’m “convinced” I have. Happy to chat by DM if it would help. Bob

Probably inflamed hair follicle, assuming (forgive me) you have hair down there

I can’t be certain, but I might have been the one who posted that, but I don’t believe it was a stickie. I use statistics a lot to calm my HA, and especially on AZ I posted on that. If you’re interested, it would be easier if you DM me. I’ll be happy to give you all the ways stats can help you. Bob

Plus, the original poster and Wesgirl are in their 20s. You’d be in the medical journals if you had any of those type cancers, unless there is a family history of EARLY such cancers.

It was I believe Mark Twain who said “90% of the things I worried about in my life never happened; and the other 10% weren’t as bad as I feared they would be”.

Last time I was in to see my doctor I told her I was concerned about some lymph nodes, if that’s what they were. She asked why was I checking them? She said “that’s MY job”. So with your derm, it’s his job, not yours to check your skin, and you simply see him as frequently as he suggests.

I’m copying below a post from the ALS forum, written by an ALS patient. He wanted people like yourself to read this before posting on the site. It is long, but very necessary for you to read this, especially towards the bottom about twitching. Pay particular attention to the ALS doctor who said “I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice”. YOU DO NOT HAVE ALS SymptomsThe major initial symptoms of ALS are clinical weakness, inability to perform certain functions (failure), atrophy detected by a physician, and upper motor signs detected on clinical exam by a neurologist. Some people may have slurred speech. If you don’t have any of these, why are you here? Also there are other reasons for these findings so even if you have one or all it could be something elseClinical Weakness—ALS is about failing, not feeling. ALS is about failure—falling down, being unable to stand on your toes or heels, being unable to button your shirt, being unable to lift your hand, being unable to open a ziplock bag, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb, but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work. First it is one muscle, then another ,then another so the things you can’t do increase. This is why you see progressive weakness mentionedSee also EMG, weakness and atrophyAtrophyAtrophy, or muscle wasting, is a symptom of ALS, but it is best judged by your PCP (primary care physician) or neurologist. If you are trying to judge it yourself, the atrophy must show a measurable difference between left and right sides, or between today and past measurements taken in the same manner (and hopefully by the same person). But remember, no human body is perfectly symmetrical and small differences are normal. Dents, dimples and other indentations in a muscle surface are common and generally meaningless. Also, atrophy generally follows clinical weakness / failureHyperreflexiaHyperreflexia, or overactive reflexes, cannot be judged by you. This determination must be made by your PCP or neurologist. Hyperreflexia is not uncommon and, especially if it is bilateral, is often meaningless. Speaking of reflexes, Hoffman’s sign is found in a number of healthy people so is not necessarily worrisome either. Speech and swallowing issuesMany visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech that others notice because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked "are you drunk?" it is a good sign!Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our undiagnosed visitors. Please look up “globus” and learn that it is a very common complaint especially among the stressed.Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue, stop! There is also a commonly repeated belief that tongue twitches are never benign. This is NOT true- they usually are benign. The source of this information appears to be an out of context quote by an ALS specialist. He had said that tongue twitches were never benign in his experience. He has since clarified he was speaking of tongue twitching in a patient already diagnosed with ALS. In his clarification he added that in the general non- ALS patient tongue twitching was most likely benignOther “Symptoms”—TwitchingIf you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes. If you have twitching without clinical weakness, atrophy or an abnormal neurological exam, your twitching is probably not from ALS, which is a very, very rare disease..This is taken from the post of a member who saw Dr Orla Hardiman a leading ALS specialist. "I asked her about contradictory information about fasics being a precursor of MND. Here is her answer 1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.2. Fasics themselves are no real indicator of MND or any other disease.3. In most cases, fasics are of benign origin.4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice.5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notices them."Check out Benign Fasciculation Syndrome (BFS) for the FAQ. Please note the forum administrator is no longer active so new members can not join. bfsrecovery.com appears to be nonfunctional unfortunately.Also, see Twitching, false alarmPainIf you have pain, aches, tingling, soreness, etc., these point away from ALS. ALS is a disease of the motor nerves, not the sensory nerves. There can be pain in ALS, but it is almost always well into the disease process, when the muscles can no longer hold the joints together or when immobility has caused frozen joints, bedsores, etc.Other Issues - AnxietyAnxiety can be a real problem that can endanger your physical health. It is what leads many folks to this forum, but it is a self-fueling fire—the more anxious you become, the more twitches you will have, the more you obsess with perceived weakness in your arm or leg or hand, the more dents you will find… and the more you will become convinced you have atrophy. If you can’t stop using the internet to diagnose your problems, or if you cannot stay away from this forum, that should tell you something important about your mental health.AGEFor those of you who are under 30:The incidence of ALS is roughly 2 in every 100,000 . . . and of that . . . only 5% are diagnosed prior to the age of 30 . . . and the further away from 30 you are, the more diminished your chances.So let's do some numbers:2/100,000 is 0.002% chance (which is about the same chances of getting hit by lightning according to the Red Cross).Now let's take your age into consideration. Again, only 5% are diagnosed prior to age 30, so to get that percentage, simply take 0.002% and multiply it by 5% (i.e. 0.05). That gives a percentage of 0.0001% or a 1 in million chance . . . and that's at best. Again, the further away from 30 you are, the more diminished your chances".Please also take into account that a high proportion of young onset ALS is familial so if you do not have at least 2 blood relatives with ALS your chances are even less than above statistics suggest.FAMILY HISTORYHaving one relative with ALS does not significantly raise your risk of getting it. For more information read the sticky in the FALS subforum.EMGsDoes a dirty (abnormal) EMG mean I have ALS?EMG, properly done, is the gold standard test for ALS. But an abnormal EMG can indicate hundreds of other, non-fatal, diseases. So listen to your doctor.My EMG was done “too early”EMGs cannot be done too early. 70% of a nerves fibers die before you feel weakness. An EMG will detect that process long before you can feel it.Here is a simplified summary:1. ALS causes nerves to die.2. EMG detects effects of nerves dying.3. For ALS, muscles get weak and atrophy when they lose their nerves (no pun intended).4. Therefore a weak or atrophied muscle due to ALS will absolutely, positively show up on EMG. Clean EMG = No ALSSpecial note on assessing bulbar function: The most common areas EMG'd to assess bulbar function are under the chin or the sternocleidomastoid, and sometimes the tongue. If any of these sites were assessed , yes, you have been tested properly.However, an abnormal EMG does not necessarily mean ALS so a so- called dirty EMG needs to be interpreted by your doctor. There are many other more common things that will cause EMG changes and some of those findings will be PART of what is seen in ALS. Listen to your doctor and do not try to second-guess him/her.Why do I see people saying their EMGs were normal when their ALS started? For those people who are accurately reporting their diagnosis the answer probably is that their ALS started in their Upper Motor Neurons and then progressed to the Lower Motor Neurons. Upper Motor Neuron disease is found on clinical exam so these people were not told they were fine. They had an abnormal exam and the neurologist knew there was something seriously wrong. If your exam was fine ( or just some brisk reflexes which are normal in many cases) this is NOT you.Another EMG question that is frequently asked is if I have ALS in one location but the EMG was done elsewhere in my body would it still show? The answer is maybe, however if you are having symptoms in several areas and the neurologist only tests one if that is negative that is sufficient. There is no need to EMG every muscle that is symptomatic.You must also realize the doctors know their anatomy. Just because you see/ feel something in one specific location does not mean that is exactly where the needle goes. It may be above below or surrounding. If you have symptoms only in your left hand it is possible that an EMG of your right foot would miss something. But if it is your left hand and they examine that extremity don't worry.

Hi Danielle, You are fine. I suggest you look at that sticky referenced on page 1 of this thread, the one on the ALS support site. Amongst other comforting things, he mentions that the disease is about not being able to “do” things, and not about physical feelings or sensations. That includes tingling, numbness, twitches etc. If you couldn’t pick up your foot or arm, or couldn’t hold a cup, or turn a key in a lock that might be a concern. If you could not rise from a seated position, or climb up or down stairs without falling, that might be problematic. But everything you mention are sensations which have nothing to do with ALS. The more you worry about this, or any perceived health issue, the more anxiety will make you believe you have some bad thing. Anxiety can mimic symptoms of diseases. You are fine; your question regarding the EMG is a moot point..it doesn’t matter. Bob

Oy! I think you’ve mentioned about 98% of the stuff we freak out about! I counted 13 out of the 24 that I’ve actively worried about over the years. Thanks for the reminders 🥵

If you haven’t already read the link from the ALS site posted by Bright Phoenix, please do so. It should help immeasurably.

I hear you Joe. Same with me, although it’s usually one issue then another after I’m able to get over the first fear. Over the past year or more it’s been non stop. I get a few days of worry free time, then another hits. Most are relatively short lived but some are doozies. While this escalation seems timing wise to correlate with COVID, interestingly I never had any major freak outs about that, especially since I’ve been fully vaxed. Like you, I’ve tried CBT to little avail. I’ve been on increasing doses of Luvox, but so far nothing, although my GP wants me to keep at it. With side effects minimal, I’m OK with that, but like you, I’m mentally exhausted from it all. Sorry I can’t help, but rest assured you’re far from alone. Bob

Hi Holls and wow, congratulations on number 4! Our number 3 was also a “surprise” but she’s my now 10 year old little baby girl! By now perhaps your flight has been taken; if not, I echo everyone’s comments. In the 90’s I flew all over the country for my job, and loved it. Let us know how it went.