Could it just be neuropathy? Very scared.

[reallyscared]

Hello.

I am very scared about having ALS. Funny thing,,,,my aunt had Parkinsons and two of my children have autism. I think they are somehow related.

Anyway, I already have neuropathy in my feet. Lately though, I have been tripping over my own feet. I have started twitching (maybe nerves?). After looking up symptoms I realized that for months I have been putting my car into park while waiting for red lights and in traffic jams because my calf feels tired.

I saw my neurologist yesterday and he didn't say anything about what he thinks it is. I was too scared to ask. The EMG is in TWO WEEKS! I feel like I'll go crazy until then. I previously had an EMG three years ago that was slightly abnormal.

Please tell me honestly what you think. I'm so scared. I don't know how my autistic kids would do without me and I want to see my daughter graduate high school is 7 years.

 

[Alyoop]

Reallyscared. I think there is a very good chance that the neuropathy that you have previously been diagnosed with, has progressed. Best answer to your symptoms by far. No need to look for another neurological illness when you have one already. It does not sound like ALS so you can relax.
Enjoy your kids.
Aly

 

[Lavender Lady]

I understand your fear I have 2 boys at home. Truly until you get answers just enjoy today, don't waist it on worry. Worry is about something you have no control over and may never come to pass. I had to wait 1 month after an abnormal EMG to see a specialist to get answers. 2 weeks will be here soon. Hang in there.

 

[pumpdoc]

Who are you seeing
? if i may ask.

 

[reallyscared]

Dr. Romine at Scripps Torrey Pines

 

[trfogey]

Please tell me honestly what you think.

What I honestly think is that you looked up twitching on a famous Internet search engine. Next, you eliminated or simply ignored the vast majority of explanations given by that search for twitching, because you didn't think those conditions covered everything that you think is wrong with you. Next, you became fixated on ALS because the descriptions you read about ALS-related twitching and the other related symptoms of the disease were far too vague to be of any practical use, and you could easily convince yourself that you had additional symptoms of ALS like weakness and cramps.

Finally, you did another search for ALS and twitching and discovered this forum and, since you are too freaked out by the possibility of having a disease like ALS to ask the doctor whether or not you really have it, you're here, digging around the site looking at other people's lists of symptoms to see if they match yours. Most likely, you've found a couple of folks that did list symptoms sort of like yours, but it's not clear from the archives whether or not the person was ever diagnosed with ALS. So now you are posting, because that couple of people had just enough difference in their symptoms that they weren't exactly like you, so all the advice given to them in their threads might not apply to your specific case.

How did I do?

For the record, your symptoms don't sound like ALS. You should stop trying to search for information about your personal medical conditions on the Internet until you have received an actual diagnosis from a real live doctor who is well-trained, experienced, and has both you and your test results to examine in making that diagnosis, rather than a vague description of some odd happenings in your life. Finally, if your fear of your condition is so great that you don't ask questions that you need answers for from the person who has them and, given what you have described about your condition here, would likely have relieved your fears about having a disease that you so obviously dread, then you really need to seek professional help to cope with that fear. Excessive anxiety about one's health is a self-inflicted crippling that no one should go through on their own.

Good luck.

 

[LizT]

im sorry these things are happening to you, but i agree with what has already been said. why did you even go to your Neuro if you were too scared to ask anything? Doesnt make much sense to come onto the internet and try to have us diagnose you when we dont have medical degrees and cant examine you.

 

[reallyscared]

I didn't ask because I thought he would say "Let's see what the test results show" right? So, I'd rather be without a terrible disease for two weeks than hear him say it might be.

Also, sticky said not to put words or thoughts into the doctors mouth and let him diagnose me. Yes, I am looking at ALS because I want to be prepared with questions about this if the subject comes up (as well as worsening neuropathy). Believe me, with two special needs kids, I am not looking to be seriously ill. Gosh, I thought this was the place to look for answers. I will not post again I guess unless I get the diagnosis.

Thanks

 

[trfogey]

Gosh, I thought this was the place to look for answers. I will not post again I guess unless I get the diagnosis.

This is a place to post to get answers to some questions. Mostly answers to questions about the practical aspect of living with ALS, but we often explain how the diagnostic process works, what the results of certain tests mean, where to find a neurologist that specializes in neuromuscular disorders, etc. In this particular part of the board we spend a lot of time explaining the symptoms of ALS to people who have become frightened by things that they have read online about this rare disease and think that they might have it. Sometimes we succeed in relieving fears, sometimes not, but we do try.

You didn't ask any questions. You told us a story and asked us what we honestly thought, presumably about the story you told. We did that. Apparently you were expecting some other type of response. Maybe you could clarify what it is that you were expecting.

If you have questions, you are welcome to post them. We may or may not be able to answer them. If we can answer them, we likely will answer them. It depends on what the questions are.

 

[reallyscared]

Hi all,

I am going for my EMG tomorrow. I was wondering if you guys have any other questions that would be important. I want to ask about Lyme (lived most of my life in the NE), MS and FBS or worsening neuropathy and its consequences. I don't want to forget anything because he is hard to schedule with.

I have been praying for all of you these last two weeks and I really appreciate you taking the time to help us who are scared.

 

[Gusflower]

Good luck. Yes definently look into Lyme. It can (with it s co-infections) be very much like Bulbar or Classic ALS with all that comes with it. Atrophy etc.

 

[reallyscared]

Good news! The EMG was normal. The nerve conduction test was slightly abnormal. No ALS! What a weight lifted.

The neuro only tested one leg. Do you think that was sufficient?

He suggested more blood tests for Lyme, heavy metal, thyroid, and celiac. The protein one was good.

I thank you all for your support and prayers. I will continue praying for each one of you daily!

 

[nreppuhn]

Glad to hear your tests went well and that there is no ALS!

I have peripherial neuropathy in both my legs -- it comes and goes (mostly goes now, which is a plus) -- but when it is acting up, my legs twitch and jerk like nobody's business. The longer the neuropathy stays, the weaker and more tired my legs will feel as well. The ran all the tests on my (Lyme, heavy metal, MRIs to check for MS, etc) and never found anything -- just benign neuropathy (which accounts for the second largest precentage next to diabetes).

Hopefully they will get an answer for you -- I will be praying they do. In the mean time, B vitamins (especially B12, B6 and B1) and stopping drinking diet pop (no joke) has helped my symptoms tremendously -- might be something to talk to your doc about as well.

 

[Alyoop]

reallyscared, the answer to your question about the EMG and having one leg done....... if your Neurologist just did one leg then that is what he required to get an answer. So I am very happy that it was fine.
Aly

 

[reallyscared]

Thank you Aly! I feel like I was born today!

I hope they find a cure for this horrendous disease as well as autism (for my two children). Best to you.