Status
Not open for further replies.

katiejasper

Member
Joined
Jan 22, 2012
Messages
14
Country
CA
State
BC
City
sechelt
Hi everyone

I posted about 2 months ago with strange symptoms. The feedback I got was that it didn't sound like ALS at all, but I have progressed more and need some advice.

I am a 32 year old female with very strange symptoms for the last 2.5 months. I have an almost 3 year old and a 4 month old, so life has been pretty busy the last few months.

A week before christmas my left thumb began twitching. Figured it was from computer use (I'm a designer) or from holding my colicky baby for hours a day. Then after a few glasses of champagne on New Years Eve, I woke up New Years day achy from head to toe, with twitching all over and nauseous. Felt like the worst flu I've ever had. This lasted weeks with a trip to the hospital after 5 days. They diagnosed me with "exhaustion" and dehydration pumped me full of fluids. Did some blood tests and told me to get some rest and eat. Symptoms just kept getting worse and was very tired and achy. My left thumb and right quad began feeling weak and the twitching continued on those areas as well as all over. Legs, arms and even back. I was hopeful that it was just BFS and a bad flu. A trip to the doctor for more blood work. All seemed ok. She tested for calcium, mag, thyroid, b12, CRP etc...did a quick neuro test etc.

Another trip to the doctor as my right calf appeared smaller than the left. I brought up my concern with ALS and she said it's very rare and i'm too young, but referred me to a MS neuro.

2 weeks ago I had my neuro apt. She did strength test etc. I described the symptoms, told her that my thumb was awkward and weak and had been twitching 2 months, and that the calf was smaller than the other. The right knee has been painful and both knees are all bony and joints are popping. She said not to worry about that or about the twitching. She did measurements of the calfs and said that that was a concern. I showed her my forearms which appear bonier than usual (when I flex my hands down, there is an indentation on both arms). She didnt seem concerned. She concluded that she was not worried about MS (no vision problems) or ALS (she said too young) but has referred me for an EMG. She didn't seemed at all concerned with my symtoms and said to just keep eating and exercising as much as possible.

Since the neuro apt I have had a hard time swallowing my spit on and off, it seems like my throat is closing, and the weakness in my knees and legs hasn't gotten any better. though some days are better than others though. Mornings I'm more stiff and limp more. I am still able to go for slow walks with my sons, but have a bit of an awkward walk because of the pains in my knees. My hands seem awkward sometimes like it's hard to sign my name and turn knobs etc... but this again, is on and off. I have to wait another 8 week for the EMG apt.

After MUCH much research, in hopes of finding an answer to my symptoms, I keep winding back in the ALS boat. I have lost weight though I have tried to up my caloric intake. People keep commenting on how I'm getting skinny. My hands are bonier than they were and the veins are protruding more.

Now my right shoulder is aching. From what I've read about ALS, my symtoms aren't exactly typical, but a lot of cases aren't. It seems it usually starts in one location and goes from there. Mine started as a twitching weak thumb and opposite leg, forearms and now shoulder? I am still strong. I went to the gym twice last week and lifted weights, but I feel weak if that makes any sense.

I am so worried and am trying to spend as much time with my little boys as I can't get ALS out of my head. I have convinced myself I have it and I know I need to just let the doctors do their jobs. I know I shouldnt self diagnose but Im just trying to be proactive. If anyone has any insight in to what this could be I would be very grateful.

Thank you kindly!
 
Sorry I forgot to mention, i also have tingling or pins and needles feelings from time to time and the twitching comes and gos. Thank you!
 
If you won't listen to your neurologist -- who you paid for a trained professional opinion -- why should any of us non-professionals waste our time and energy on you? If you want to end the fear and worry that you have about ALS, then stop fearing and worrying about ALS. You started it. Only you can stop it.

Despite what you think and your "designer" Web "skills" and your hours of "research", you don't know more than your neurologist about what's wrong with you and it's juvenile egocentrism for you to think so. You are earning the misery that you are feeling with your rejection of good medical advice. When you decide that you've had enough of the misery, just come to your senses, admit that you've been wrong (which you have been and still are), and move on, putting ALS way out of your mind -- back to the crazy place you got it from.

Good luck to you.
 
Last edited:
Hey Trfogey,

I guess you're having a bad day huh ?

Remember when you didn't know how much fun that was ?

Lighten up pal...

Fight On,
Shane the Pain
 
No, Shane, I'm having a perfectly good day. If you disagree with the advice I've given the poster here, feel free to offer your alternative advice to her.
 
No one here is going to be able to diagnose you. It is a support site, not a medical research or clinical site. The PALS don't even try to assess each other's challenges as they arise. Instead they share hints and tips to make it through each individual experience. And, regrettably join together as losses occur either in terms of functional losses or, well.

You've listed a massive number of symptoms, but yet you are still able to get out and walk with your children, open doors and perform basic tasks. I dare say that most PALS on this site would be envious to have those capabilities back. I think the only reasonable thing you can do is to work with your health care team to understand what's happening and hopefully find effective treatments. I also think that anyone potentially facing a chronic or serious illness should enlist a psychologist or other mental health professional to work through the inevitable emotional issues.

You have a choice to move forward with a positive outlook or to chuck it all in and assume the worse. I hope, for yourself and your family, you choose to smile today and press on constructively. In any case, patience and perseverance are your friends.
 
A great post Fitz! Thanks for saying so well.
 
Thank you all for the good advice and for taking the time to respond!
 
Tr, its good to have you back.

And fiitzroy, nice way to put it.

Katie, I hope yoou take the advice above and speend the time with your children and not the computer.
 
So you said your neurologis tested for weakness but you did not mention the findings from her strength test? I will say (with great trepidation) that your Dr's comment about being too young for ALS does not ring true. That does not mean that you have ALS. Obviously we are not Dr's and can not diagnose you bit to claim that exploring the internet and who knows what sites is equivalent to research is far from being helpful to your anxiety.

Let them do the EMG, I will maintain that if your Neuro does not seem concerned you should not be either. I will also reiterate that the absence of clinical weakness would clearly point away from ALS.

Good luck and please stop obsessing about ALS.
 
The neurologist had me do some squats and tested my hands etc but she didn't say much, but didn't seem concerned. The only thing she said that concerned her was that my right calf was measuring smaller than my left. She said "that does concern me" so set up an apt for the EMG. I know that while it would be rare to get it at 32, it can happen. I am trying to think positive and am going to stop searching the internet for answers and spend that valuable time with my sons. Thank you everyone.
 
Praying that it's something treatable.
 
Thank you so much Ms. Pie! That means a lot! xox
Now back to seizing the day and playing trains with my boys :)
 
If she was not concerned by the squats and hand strength tests then that is a great sign. There are numerous reasons why one calf is smaller then the other the least of which is ALS and it is quite possible that you calves are simply not symmetrical.

Good luck!
 
Last edited:
Status
Not open for further replies.
Back
Top