I am 30 years old female. Many, many men in my family have died of ALS. My father died 3 years ago at 56. Both his brothers (my uncles) died in their early 30's. My grandfather died of it. Supposedly, many men before them did as well.....but, the years in history before the time my grandfather was alive, they weren't really able to diagnose ALS yet. Or atleast that is what I was told by a doctor when I told her the last 9 men in my family have died of ALS and she acted like I was retarded and told me that wasn't possible and then explained that to me. There haven't been any women to die of it as far as we know. But my sister and I are the first girls on my dad's side since before my great grandfather and my dad never told me much about his family so I know little besides what I just stated.
Around the last week of July 2008 I moved from a house to an apartment. During this move I noticed a dull ache in my right shoulder. I am right handed. I assumed I strained a muscle lifting something and ignored it. The dull ache, just enough that I couldn't completely ignore it, but nothing to keep you up at night continued for aprox. one week and then disappeared to no pain at all. Around the time the ache went away, I realized I was having trouble lifting my arm. I couldn't get my forearm or elbow past shoulder hight. Again I assumed I pulled a muscle or something, although it did concern me that no matter what way I twisted it, pulled on it or stretched it with my left arm I had NO pain. I had no recollection of injury.
Over the next four to six weeks my right arm entirely quit working. My muscles on that side are completely atrophied and I am just skin and bones. It progressed quiclky to include my hand. Although there was issues with my hand at the beginning too. The first lack of ability came from not being able to hang shirts in the closet with that arm because I simply couldn't lift it high enough. At the same time I realized my fingers could move inward and downward like the way you do to grip something, BUT they wouldn't seperate, like spread out and come back together so they are straight and touching. Anyways, now the only thing I can do is move my fingers downward towards my wrist a little. My arm hangs like a limp rag and I have a slight claw look to that hand from not being able to straighten it.
The first diagnosis was brachial plexus neritis. MRI's of head, neck & shoulder showed nothing, including no inflamation or injury. Which I think is interisting since I think "neritis" actually means inflamation, but maybe I'm wrong. I saw two neurologists at this point (they work together) who despite normal MRI's called my experience "garden variety neurology" and were sure it was that my brachial plexus nerves were no longer communicating for some reason. They also did nerve tests of some kind where they stuck me with needles and had me flex, and some wand thing they shocked me with that gave them readings of some kind. These results of these left them at their original diagnosis. Since evidence showed it not to be an injury either, they said it must have been caused by an auto-immune response. At this point they asked me if I'd had any injections. At which point I lied.
I became addicted to heroin and cocaine at 19. Mostly heroin. I spent many years using and some recent years clean. Closely after my dad died I started relapsing about once every few months. When the arm symptoms started I had done it like three times that week. Not in the right arm though, I've always injected in my left. Now I'm sure some of you will blow me off at this point and say screw her, she did it to herself, and thats fine. I completely understand. For those of you that experienced addiction (I was actually born addicted to heroin, but didn't try it myself until 19, which watching what it did to my mother, baffles me still) and do keep reading, thank you.
Of course this immediately confirmed the diagnosis in my head and was overwhelmed with horror and disgust that I had caused this to myself. I have not told the neurologists because it will give my insurance all the more reason not to cover me which they are already trying to do by saying it was a pre-exhisting condition. I have done a lot of research and talked to two other doctors off the record who have told me that regardless of if the bacteria that got in my veins and caused the auto-immune reaction came from my injection or dirt on my skin during a vacination etc. (they said probably makeup I put on my tracks and not cleaning off the makeup before I injected), it wouldn't change the course of treatment. Tests have ruled out a stroke or brain damage cocaine, stuff like that. They put me on prednisone and antibiotics as preventive measures while waiting on test results I already mentioned.
I also saw a infectious disease doc who rulled out lymes disease amongst others.
So I accepted this diagnosis, went back to NA, started seeing my old addiction counselor again and started physical therapy. Problem is this.
I have constant faciliations now. All over. I get sometimes as many as 5-8 going at once all over my body. They keep me up at night. So I made an appointment with top neurologist and professor at the research hospital where I live. She thinks I have als. These are her reasons.
She says if it was the brachial plexus thing, one of two things would have happened by now. My issues with my arm would have either platued weeks ago or started to get better. She says it shouldn't be progressing like it has. I've found stories on the internet with this though who's arms didn't show any improvement for over a year.
She says my reflexes are hyper-responsive indicating I now have upper and lower motor neuron issues going on. But I'm still weaning off the steroids which make me edgy PLUS, the first two neurologists I saw 4 or so weeks before her also noticed I had hyper-reflexes and they laughed about it and made a joke about if I was nervous.
And last of all she says I'm weaker then I should be on my left side. Now the only tests she did to come to her conclusion of that were manual physical tests. Like she made me hold my elbow out to the side and try and keep her from pushing my arm down. Various things like that. I totally disagreed with her when she said that. She said for someone at my age, weight and physical condition (I've always been in shape) I should be able to resist her more then I am. My thoughts are that being I just went from being a normally right handed person 5 months ago to having to use ONLY my left hand for everything, IF it is weaker then it should be, it's probably just fatigued.
BUT then I shared her thoughts on me being weak on my left side with my physical therapist since he'd been seeing me almost four weeks, two times a week, and asked his opinion. On my first appointment he made me squeezes this handle thing a few different ways that had a pressure meter. He went and got that and had me do the same tests and to my disappointment agreed there was a definite drop. Not a lot but enough to be worth noting.
I called the family and found out Dad did test positive for the SOD-1 gene. So my blood was shipped off like a week ago and I should know in like 2 more weeks if I test positive for the gene.
Does anyone know if it's normal to not have pain in the early stages of als? I get some pain in my bad arm but it's only from it having no support. If I'm on my feet all day and don't sling it at all, it will ache as if my bones are being stretched apart. But no pain if I keep it supported.
Also, my dad and two brothers all died within one year of their first symptoms. I know the normal average is 2-5 years, but based off my family history, don't you think I would be further alon by now?
And doesn't sclerosis mean "hardening". My arm muscles hard at all. They're all gone.
I noticed that you haven't had any replies to your post. I am sorry I haven't had any experience with either conditions. I feel very sorry for you having to go through this. I hope you have some support. I think the worsed part is the waiting and not knowing. I wish you all the best, I hope you get good news soon. Please let me know how your going, I will be thinking of you.
Thanks for sharing. I've been checking this forum every few hours since my post. I wish I knew more. Now I don't even know if I'm going to get the results with out paying the gene testing center first. They want $1100 to do it. I don't even have $300 let alone $1100. The ALS place here sent me something saying they'd cover 70% of it if I signed up for this thing through them, so I'm going to mail that off tomorrow. I just wish I knew.
Oh my God. Can someone please give me even a thought on this?!!! Are there any doctors on this board? Can anyone direct me to a different board on the internet that I can post this on and maybe get a response? Anything? Turns out the gene testing center not only won't give me the test results before they get the $1100, they won't even test it untill they have the money. The ALS chapter here will cover 70% of it for me but I have to pay the testing center first and then they will re-imburse me. I don't have $1100. I was running my own business, renting a room and working as an aesthetician/laser technician before my hand quit working. But I was only a year into it, smack in the middle of paying off what it cost gto open my business, not making any money. Now I owe on a business I no longer have and make $8 because it was the only place I could find that
a) would hire a one armed girl
b) gave day one benefits.
I'm sorry. Enough pitty party crap. I wish you all the best. I'm going to search for another board and hopefully have more luck there.
I wish so much that I could help you. Do you have any family or friends who could loan you the money? I did a little research on brachial plexus neuritis. If I read it right it said there is a form that is an auto-immune disease that often eventually effects both arms. Recovery can take from months to years. Of course I'm just reading that from the internet. I can tell you though that I get a lot of muscle twitches when I'm anxious, they hang around for quite a while after I calm down. I can't help you with your insurance, it all works differently here. We are covered for pre-existing conditions if we are insured for 1 year or if the condition hadn't started showing symptoms before the insurance started. I think if I were you I'd go back to one of the Neurologists and ask them to please pursue a difinitive diagnosis. You can't keep going through this. Have you told your Mum or sister what you're going through? I'm sure they'd want to help. Hang in there, you are in my thoughts.
Although I am not an expert on ALS, I just wanted to let you know I am thinking of you and wishing the best for you. I am currently undergoing evaluation to determine some neurological problems I am having (hyperactive reflexes, myoclonus), and have been told by a neurologist that it is most likely in my brain and could be either ALS or MS. So I completely understand how you are feeling right now.
One thing I have discovered is that not all doctors are created equally and you won't click with all doctors out there. If you are working with one that you are not comfortable with for some reason, go to a different one ASAP! Your health is too important to not get the right support and treatment.
Another thing in relation to your past drug use - always hold your head high. We are all human and we ALL have vices, and the fact that you aren't perfect doesn't mean that you are any less of a person than anyone else. You're a special person and deserve to be treated with dignity and respect.
Please post back here once you have any new information - I would love to hear what you find out. Take care!