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Garycarter11

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Oct 22, 2012
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Learn about ALS
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IL
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Springfield
Ok well i have never posted here before but i have read a lot if the threads. I honestly do not hope to offend anyone i just am looking for some help i am in a dark place right now. I know this is a terrible disease and i pray for those that have been disgnosed. I am in my mid- late 20s and i know it would br very rare for someone my age to contract this i am just looking for an answer to my symptoms. I have been to aboutbfs.com and i know that is more common than als However just because those are true doesn't mean I don't have als. I am only 27 and I know it's extremely rare for someone my age to get this but it's not impossible. My symptoms first started out mainly as gastro problems mainly daily diarrhea and also some short term memory loss and some loss of coordination in my left arm and left leg. I feel like it is hard to completely flex my left calf, I lost about ten pounds and also some decreased coordination in my feet. Do gastro problems have anything to do with ALS? I lost my job about 6 months ago so I have no health insurance, but I went to the community health care clinic to see a doctor about a month ago who didn't seem very interested in my symptoms, blamed them on my anxiety, but sent me to have complete blood panel, WBC count, sed rate, the whole 9 yards, but no EMG. The only thing that came back was slightly low potassium. I stumbled across something on DrGoogle that said als victims often have low potassium. I almost wish something would've came back because all this did was confirm my als fears even more. Every joint in my body pops constantly it started with just my neck but now even my jaw pops when I'm chewing or open and close my mouth. This is probably my scariest symptom along with my cramping hand but I also have occasional muscle twitches and although I'm naturally thin it seems like I have muscle wasting. I certainly feel more fatigued than usual but I'm still able to do things like stand on one foot, hop on one foot, of push-ups pull ups and even ran 3 miles last night but don't feel as strong as I used too. I also seem to notice its harder to move my tongue throughout my mouth and if i stick my tongue out or try to touch my nose it quivers and makes my ears ring. I also recently started having hand cramps which sent me into a tailspin because I know hands and feet are usually the first togo. The hand cramps are mainly in my right hand and hurt most if I try to fan out my fingers. I noticed a slight foot drop in my left foot a couple months ago but it rarely happens maybe once a week and i assume that would be getting worse by now. I feel like i bump into things too often and have constant saliva in my mouth not neccesarily drooling more like feeling like i need to wipe the corner of my mouth. I know i sm hyper vigilant about my body and i am noticing any little thing that may have gone unoticed in the past. I know way more than I should about this disease because I keep researching things to disprove I have this but it just makes it worse. If I first started noticing these symptoms a few months ago would I still be able to bike, do push ups , etc. I can't afford an emg with no insurance please someone tell me I'm ok I have a 4 year old girl and I'm petrified that I won't get to see her grow up. I can't even make long term plans right now because I feel like I am going to be dying soon. I have daily panic attacks even though I've been taking Paxil for a month. Severely depressed right and again I sincerely apologize if I offend anyone with als I am not trolling, not doing this for kicks, I'm very very scared just like you guys probably were when you first started noticing symptoms. It's sad that I feel like my best case scenario is MS or Parkinson's, but I just feel like too many things are pointing to als. It's the first thing I think about when I wake up and last thing I think about before I go to bed. Thanks for your time and help to anyone that responds and god bless. Sorry about my grammar/punctuation as I am typing this from my phone.
 
Absolutely none of your symptoms point to ALS. I know you don't have insurance but you need to find a doctor that will figure out what is getting you and treat it. It's not ALS though.
 
With all due respect, do you even know what ALS is? Not a thing you've mentioned here has anything to do with ALS, and it doesn't take an ALS patient or a neurologist to tell you that with certainty. Gastro problems, coordination issues, extreme anxiety, panic attacks -- not ALS. You've got a mean case of the anxiety, as your doctor told you, and that is a real and debilitating condition in its own right. Please work on addressing it, for the sake of your child and family, if nothing else. You can't possibly be functioning if you spend your entire day convinced you're on your death bed. I know the lack of insurance complicates things, but you should be able to find some resources in your community that work on a sliding scale. Universities often offer very affordable counseling services because it's students doing the counseling. I utilized such a program several years ago during a rough stretch in my life, and the quality of the service I got was great. Whatever you do, stop the self-diagnosing, as you're doing a really bad job of it. Leave that to the professionals. No doctor in his right mind would perform an EMG on you because there's literally no reason to suspect a neuromuscular problem. Good luck and take care.
 
Doesn't sound a thing like ALS.

Please look for the thread here on the forums about health anxiety. It will explain a lot.

Luke's suggestion of counseling at a University is a good one. Please keep up with the Paxil and contact your prescriber if it doesn't do the trick. You may need a dosage adjustment or a change in meds if you don't get some good relief.

Please take your mind off of ALS.
 
Ok well thanks for your input. The thing that is bothering me is that there still isnt a rational explanation for these symptoms. I realize that gastro problems arent a main sympton of ALS I just thought that maybe they were some kind of secondary symptom. What about the hand cramps? Do the cramps come before or after wasting/weakness. It feels like the hand cramp hasnt gotten better and its been a week or so now, and it feels like it hurts the most when I try to do the kind of things that ALS home tests have you do, like unscrewing lids, or picking up a thick book with index and thumb. I am also concerned about the popping joints because I had the SED rate test, which shouldve have showed if I had something like Rhematoid Arthritis or something along those lines. In my mind the joints are popping because the muscles are weakening/wasting which is putting more pressure on the joints and making them pop. A month ago it was a slight neck pop, now its everything from ankles, knees, jaws. I have never had health anxiety in the past, but I do understand that I exhibit these symptoms. Ive never been a person who wants to get sick, hell I even had a collapsed lung once for 4 days and didnt go to the doctor because I thought it was a sore rib, and when I finally went the doctor looked at me like I was insane, and said it was a good thing I finally came in. I definitely have a new understanding of neuro diseases whether I have one or not, they should have some kind of neuro disease month like they do breast cancer month. I feel like these things dont get the attention they deserve. Again thanks for your time and comments, hopefully I will be able to get past this.
 
If I understood correctly, your question to the forum was if your symptoms sound like ALS. You have received the answer. How else may we help you?
 
Try not to take a bunch of symptoms and try and bunch them all together. As Luke said, it's not ALS. When you break it all down and stop trying to create a " syndrome", then it's possible to get help for them, or it will help you to realize how minor they are.

Break up your symptoms eg Gastrics issues and get them sorted. just might help.
 
Well crazy thing just happened the community health care place called me today and said the doctor that I saw a month ago has referred me to see a neurologist. Apparently since I don't have insurance it takes longer to set up an appointment but I have one a week from tomorrow (Halloween). I assumed that since he didnt refer me that day that he wasnt doing so. Apparently the doctor saw something for him to refer me to a neuro so I'm not completely crazy. Kind of stinks as I was almost feeling good after you guys telling me I was way off base, but now I am back to worrying again. Well either way I will know in a week one way or another but it's going to be a long week.
 
Dear,

This is meant with the utmost of sincerity and concern. First, there are several reasons for hands to cramp and spasm. Carpal tunnel is the most common reason, and it's diagnosed with an NCV which is done by a neurologist.

Very few neuro actually specialize in ALS, many have not seen it outside of their schooling and residency. Popping joints are not an early thing in ALS, either.

Digestion issues have nothing to do with ALS either.

There could be something going on, but ALS isn't it. Low potassium can also cause cramps and twitches, as can a lot of other things.

Hopefully, you will get to the bottom of this, but do try Luke's suggestion of treating the anxiety before it makes you sick.

Good wishes
 
Thank you very much I appreciate your help I greatly appreciate your input.
 
That's good that you have a referal. Why don't you try and write all the questions you have down before you go. It's easier to remember when you are at the appointment. Alternatively, take someone with you, who is also armed with the questions. That way, if nerves take over, you have something to refer to. It's frustrating to leave an appointment with a list of unanswered questions. I am sure we have all done that in the past.

I hope it goes well and you get some help with your issues.
 
Glad to hear about the referral. You're doing the right thing by getting the help you need. We don't think you're crazy, but when you title a thread "Multiple ALS symptoms" and then go on to describe symptoms that aren't associated with ALS, you had many of us scratching our heads. You should find that reaction comforting though. Good luck with the appointment and let us know how it goes.
 
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