Tackling New Anxiety Symptom

[XinaMae535]

I've had my good days here and there, but more of the bad days. I am trying everything: sticking to my anxiety meds, hypnosis, self-hypnosis, progressive muscle relaxation, seeing psychotherapist for fear management. I even made a break through this past weekend and went swimming and sat in the saunas at a hotel. I hadn't done that in months!I can't get past a new symptom here: I've been having pains off and on in my hands. Occasionally, it would come with some middle finger sensations, like pain and also like as if I can't move my middle finger that well (fork holding, flipping through paper, typing, etc). I found out this is called reduced dexterity. I am right handed, btw. Well, now, this pain is more persistent, my left forearm (not upperarm), hand and middle finger feel more and more weak. I take Ibuprofen to help with the pain. It SEEMS like when the pain dies down, the dexterity comes back, but I cannot say for sure. Side note - all labs are normal, except that I have positive homogenous ANA at 1:160. Nerve conduction tests on my arms and hands in January were normal. No EMG done (yet).Last night, I felt this same kind of stuff in my toes on my left foot. Like when I wiggle them, they feel different than my right. I couldn't sleep at all. During the day today, I didn't notice anything in my toes but had this pain/dexterity issue big time in my left arm/hand. I also have pain in my right forearm, much less though. Also when I woke up today, my husband and I noticed that my knuckle on my left hand for my middle finger was red (looked like tiny red veins under my skin showing through) and the top the middle finger had two bright red areas/spots, though they were not painful or swollen.I am trying to convince the part of my brain that controls fear, to accept that ALS does not usually come with pain, and that I should be HAPPY that I have these red areas and pain, and positive ANA, as they indicate probably something else, something auto-immune, common like arthritis or complex lupus (and most auto-immune issues are manageable).UGH, but this part of my brain throws it all back at me and yells, "YEA BUT THERE IS WEAKNESS AND YOU ARE HAVING PROBLEMS MOVING YOUR LEFT FINGERS!!!" and it keeps thinking about times where I read that ALS could cause pain (like in Wikipedia), which I want to try to erase from my memory or hope that I understood the article wrong.and that is all it wants to accept.I've been asking my husband small things like, "carry this, is this also heavy to you?" or "make a muscle in your calf, do you also have this crease?" So he is is super frustrated and started smoking again after quitting for several months :crying: I've also managed to scare my mother with all of this stuff, she partly thinks I am losing it, but she is also worried about what I could have and wants answers.My doctors all tell me everything I have is from my fear and anxiety. I can't believe that!! What about the positive ANA, at a level that would indicate auto-immune? It's been 1:160 since May of last year. What about this redness in my finger, and the worsening of the dexterity?I feel depression creeping in here - feeling hopeless, and guilty that I am putting my family through this. And scared to no end about my symptoms. And being worn out from being scared.The only hope I have right now is that I am finally seeing a Rheumatologist for the positive ANA next week. I may just go to my primary care doctor tomorrow and break down. Not sure I can wait until next week. Sorry about the book here. Thanks to those who read through it all. Many more thanks (in advance) to anyone who replies to help me get over this hump.

 

[jsageurge]

Read your whole post, and your first post. All I can tell you is that I would love the opportunity to wager 10 years salary and my overpriced house in NJ, USA that you don't have ALS. I would then be able to pay for college for my 4 kids, quit my job as a software engineer, and move to a remote, warm and scenic area (with high speed Internet access). I'd spend my remaining time (in this life) relaxing on a beach, meditating, drinking beer, and studying really interesting topics like the mind and consciousness, psychic phenomena, OBEs, NDEs, past-life memories, and ultimately discover the meaning of life. ) I know that isn't going to happen, and you'll continue to worry anyway until enough time passes and you find something else to worry about. But I can dream. ) Cheers,Bill

 

[XinaMae535]

Thank you Bill, also for reading my first post. I keep getting told that actually. My psychotherapist said she would bet her entire practice...my primary care doctor told me she would bet her years of experience...I appreciate all of these gestures, but I guess what I don't understand is...how can you all be so sure? I mean, doesn't ALS come with weakness and twitching, and isn't it a disease that is diagnosed by ruling everything else out (until the disease becomes more apparent, then it can be seen on tests)? So far, none of the docs haven't found anything wrong, besides the ANA. And even there they say that 1:160 can be seen in healthy people. Yet I have these symptoms...I've never in my life wanted anything more than to be diagnosed with a disease (anything except ALS or just plain anxiety), so that I can know, manage it (get real relief from these symptoms) and move on. :crying:

 

[Gracer]

we are so sure becasue you never wrote like "I tried to button the shirt and could not do it becasue fingers were not responsive" or "Holy crap I could not life the cup of tea today however I tried" or 'I found my middle finger does not move however I try". Your description is 'I feel like...it seems to me that..."So you only FEEL not FAIL.so it is not clinical weakness.look, you have ALL SIGNS of possible RA: high antibodies, pain and redness in the joints. Holy crap why give a second thought to ALS?RA not always means you would have hot joints - it involves tightness, stiffness, all sort of unpleasant sensations, limited mobility in the joints etc. it develops slowly and not always has extreme pains. You may have minor bout of RA, may be diagnosed etc. (RA has its own criteria set) - why do you think it is ALS????Psychotherapy is a long journey (it takes years sometimes) so if several weeks or month did not changed your fears, it does not mean you failed on this way.

 

[XinaMae535]

Thanks!! I appreciate you all more than you know! Even if you yell at me to get me back to reality Ok, not yelling but you know what I mean, I hope!I guess I think it's ALS because:1) I've been twitching, since July last year.2) I am now beginning to feel dexterity loss in my left hand, starting mostly with my middle finger, but in general my movements are 'off' - like I said before, with holding my phone, a fork, typing...and when I try to pick up my laptop with my left hand (using my thumb and fingers), it's harder to do than my right. And I know a person with ALS can't do this at all, but I keep thinking, "they had to start out somewhere - like before they couldn't do it at all, they probably noticed their movements were off, and then it got worse to where they couldn't do it at all". So maybe I don't have ALS yet, but I am scared that it's beginning.3) There is a quote from a doctor on here that said he believes if a person has been twitching for 8 months with no weakness, then he would rule out ALS. I am right at that 8 month mark and am starting to have weakness (the reduction of dexterity in my hand).4) I kept telling myself before if I had pain, that I could rule out ALS, but I read that there can be pain associated with it, and there is pain management for ALS patients, so that threw that out of the window for me.Deep down somewhere, on some days, I truly believe I do not have ALS, and that I must have something along the lines of auto-immune, but those times don't happen enough. I am going to stick to all of my therapy and do what does my body good, because what else can I do? Hoping time will go by fast which will allow me to see that the weakness is not getting worse, and until I get a real diagnosis for something to explain this. Right now I get excited if I can sleep because it is the only time where I don't have this fear. I wake up though and realize I still have this nightmare of waiting and am immediately so upset.

 

[Gracer]

Xina,ALS victims need pain management, as far as I understand, in two cases:1. in case if UMN signs prevail and they develop spastic paralysis because it should be really painful due to incredibly high muscle tonus. it leads to contracutre (affected part of the body becomes specifically crooked, takes distorted position, and this is impossible to miss or confuse with something else).2. on well developed stages when body position is really distorted and they have compensatory overload in still healthy muscle groups.none of that seem to be your case.dexterity reduction, coupled with pain in the affected joint or digit, rather indicates inflammatory disease like RA (however I am not a doctor but I have enough common sense and less fears compared to you so I am trying to put together your high ANA, pains and redness). Also in really coming ALS (not suspected) people usually have PROMINENT and quickly increasing neurological deficite, and not in on-off mode but quite steadily and quickly progressed to the loss of usage.if you had normal neuroconduction test a month ago, hardly you could be limited only with feeling' not having real failures, should it be a rapid ALS progression.taking relatively heavy objects like laptop PC with thumb and finger trying to keep it so is one of the worse things you can do for yourself as our fingers usually are not for such excercises (unless you are a pickpocketer or ninja). use your full arm muscles for lifting items over 500 grams and your joints would be safe.hope this may help

 

[XinaMae535]

Gracely,I did not realize all of that regarding pain management. I was probably too upset to google more about it. It makes sense to me that those are the reasons they need pain management. It makes me so utterly sad that people who have ALS have to go through....everything they have to go through. I wrote before that I want to be an activist for A'** research, once I am out of this hole (and with therapist approval), because it's so so so horrible. For me, the worst disease that exists, mainly because there is no stopping it.You said:"Also in really coming ALS (not suspected) people usually have PROMINENT and quickly increasing neurological deficite, and not in on-off mode but quite steadily and quickly progressed to the loss of usage. ....if you had normal neuroconduction test a month ago, hardly you could be limited only with feeling' not having real failures, should it be a rapid ALS progression."I was also not aware of this. I knew it progressed quickly and should always get worse, but I have read some stories where some cases of ALS are slow progressing. I should stop really looking up individual cases, and realize 1) ALS in itself is rare 2) if in my age, even rarer 3) if in my age and then a special case where it slowly progresses, then even more rare. For RA - the redness comes and goes, and only in certain spots, but I definitely have like a radiating pain in my forearms, wrists and fingers, also my left hip (which I previously combined with my left thigh pain/hardness, which I still have. Maybe it's the other way around, that really my hip that is causing my thigh symptoms). So left hip/joint would probably fall within a joint/arthritis/imflammation type disorder. When I take ibuprofen, the pain dies down and I've notice that movements are better. I can't wait to see the Rheumatologist on Monday. I know he will need to take more tests and I will have more waiting, but it's totally worth it if he can come up with what is really going on with me.I had to laugh at your ninja comment! HAHAHA!!!! I know, it's stupid to test the strength like that. It really is. I need to stop.And for JoshSon - you are so rihght about the lifebuoey! I will break from here, but will check in to see if someone replies to my topic about German doctors and support for loved ones of BFS sufferers.You are all so my heros, taking time out of your lives to write back to me with your very supportive words, advice and knowledge! Thank you again and again!