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concernedcass

New member
Joined
Jun 12, 2013
Messages
8
Reason
Learn about ALS
Country
CA
State
Ontario
City
New Liskeard
Hi. I would like to give you a history of what I have experienced over the past year and 2 months. (previously healthy, no medical conditions what so ever)
April 22 2012. I went to emerg because I was experiencing dizziness and my upper arms and upper legs were tingling. Multiple tests were done including blood work, ct scan, ekg for my heart, all of which came back normal. I was sent home with a diagnoses of anxiety. OK I could live with that. A couple weeks later, I went to emerg again because the right side of my body (from my face, to my arm, to my leg) went tingly and slightly numb. I thought I was having a stroke. This doctor referred me for an mri, to rule out ms. My family dr said in her opinion the mri was normal (there was one unremarkable spot) nothing of which would cause any of my symtoms. Again, they said stress was the probably cause. Over the next few weeks I experienced extreme weakness in my arms, mostly my right. I also had a lot of pain and a feeling of pressure in the back of my head and neck. I had a lot of headaches. May 2012, I continued these feelings of slight numbness in my face, felt lightheaded and dizzy all the time. June I started having difficulty swallowing and shortness of breath. I even had joint pain at which I was again sent for bloodwork to test for lyme disease and other deficiencies all of which came back normal. June 14 2012, I had chest pain, difficulty swallowing, my tongue felt weird and weak. When I would try and sleep I would wake up and it felt like I forgot how to swallow and had to force myself. In July I saw a chiropractor, I got xrays which showed cervical kyphosis (reverse of natural c curvature in neck)So we thought this could be the source of all my problems. Eventually my tingling went away, but I would still have weakness, arms, legs, mostly my right side of my body. My tongue, throat. Its been almost a year since regular chiro adjustments and I still have weakness. Feb of this year I was having shortness of breath, and the right side of my body felt weak and droopy. I even thought my eye and mouth looked droopy. This continued over the next couple months. I have been very anxious about what could be wrong with me. Currently I am experiencing weakness in my tongue and I find it hard to swallow. I feel like I am slurring my words even though no one has said anything to me. My hands and legs still feel weak (but I can still run, like I just ran 4 km yesterday) My hands feel weak, and sometimes hard to open. So tell me does this sound at all like ALS?
 
I forgot to mention that I did have a lot of twitches all over my body but they came and went. My right eye twitched for months non stop. Also forgot to tell you that I recently was referred to a neurologist and he said everything looked normal. He did however refer me for an mri of my neck to see if there is anything wrong there, still waiting for results.
 
I am gonna answer you so people with ALS do not have to take the time to. No, it does not sound like ALS in my humble opinion. Here is why:
1. Your neuro told you that your exam was normal.
2. You just said you ran a 4k yesterday.
3. The doctors at the ER diagnosed you with anxiety.
4. Tingling and numbness are sensory symptoms and more along the lines of MS not ALS.

I am currently in limboland with my symptoms/diagnosis. And there is no way with my leg weakness/fatigue that I could run a 4k!

How can you have weakness to the point that you are so concerned that you have a motor neuron disease and have run a marathon yesterday? Anyway, you sound like you have some tongue etc symptoms which could be bulbar ALS but your neuro said your exam was normal and you have many other non ALS type symptoms so seems highly unlikely. I would continue to follow up with your doctors. Good luck..
 
Thank you for replying so quickly debd41, My neuro did say everything was perfectly normal but he didn't even really look at my tongue, throat or really even acknowledge those concerns. It does seem to come and go (symptoms lessen but still kind of always there) I have not had any trouble with liquids or anything as some others have described but its still scary. My hands, especially my right seems not to want to work properly. I do not have any twitching as of late.
 
If you read more and ramp up the worrying a bit more you may find that you have all the symptoms you read about. That is how powerful the mind can be. Add in some intense weight training, core exercises and interval training. If you can even run you should take what you can do, do it more and do complementary things to broaden your abilities.

Then again, you can worry incessantly, kick the body into right or flight mode, flood your body with adrenaline/epinephrine, cortisol and then impede blood flow, have muscles get weaker, not eat right, starve the muscles so they get weaker... If you don't focus on what you can do and deal with any deficiencies, you will just defeat the hope and spirit you need. Without the diagnosis you hope you don't have it does not mean stop life while you pursue it. The time lost now will never come back and if you get the awful diagnosis of ALS, you have taken valuable time that you could have put to better use. It sounds easy on paper I know, but live while you investigate.
 
Thank you for your words of wisdom uptowneddie.
 
I would still appreciate other inputs from other ones if possible. Still having concerns with my tongue. It feels weird in my mouth and I feel like I'm stumbling over my words and its an effort to talk. Tongue is very dry. My right hand also feels tight and stiff. My thumb and pinky feel like they don't want to work properly. Like they r seizing up?
 
most als..ers on here enjoy and feel good , helping and advising......despite great effort required.....so dont feel bad for them......that would not be welcome......johnny
 
I would still appreciate other inputs from other ones if possible. Still having concerns with my tongue. It feels weird in my mouth and I feel like I'm stumbling over my words and its an effort to talk. Tongue is very dry. My right hand also feels tight and stiff. My thumb and pinky feel like they don't want to work properly. Like they r seizing up?

Go to your doctor again. NOTHING you describe sounds like ALS. What have you done to help with the anxiety? What have you done to reduce stress?
 
My husband has bulbar onset ALS and it started with his tongue. In the beginning he was slurring his speech, everyone thought he was drunk (and he doesn't drink). He could not stick his tongue out. If you looked in his mouth, his tongue was rapidly twitching all the time. This did not randomly come and go, it twitched constantly. Now his tongue muscle is pretty much gone, cannot talk, swallowing is getting difficult, he can't eat most foods, chokes on thin liquids, can't sip from a straw or even attempt to blow out a flame or blow up a balloon, and has problems with saliva buildup in his mouth since he has such difficulty swallowing. This, too, causes a lot of choking. So what I'm getting at is, swallowing difficulty came AFTER he lost most of his tongue muscle. And his symptoms didn't randomly come and go from one day to the next. It has been a steady deterioration, ever so slow, ever so devastating. I hope you see that your symptoms don't match up. I pray you find an answer to your ailments. PS. My eye twitched for months from the stress of my husband's diagnosis. It's gone now.
 
Ottawagirl
I have been exercising regularly, mostly running with Pilates once a week. I am just finding it hard to believe that this is just anxiety. I have been healthy and have had a pretty good life so far. Then up until 14 months ago I started having these symptoms one day just hit me. So strange. I am only 28, I am happily married and I have a 6 yr old daughter. Anyways, I will wait and see what my neurologist says next month and go from there. Thank u so much for responding, I go feel better.
ECPara. I am so sorry to hear about your husband. I never knew anything about this disease until I started doing my own research, after my chiro mentioned it to me. I pray that one day there will be a cure! Everyone on this forum sound like truly amazing people with amazing strength and I see how you all support each other. Take care!
 
Hello everyone. I am still so concerned with having ALS. I have to wait until August now to see my neurologist. I am currently still experiencing tongue/throat tightness or stiffness. I can still eat and drink fine although I do feel like I'm going to choke sometimes. My hands, (both) are weak, and I have problems coordinating my fingers, especially my thumbs and pinky fingers. They feel like they just lock up sometimes. I did join an anxiety forum but I still feel this is more than anxiety. Please help!
 
what you want...io be tolg you got the dreaded or told you aint.......when your told you aint you refuse to except..so tell me what you want to hear and i will then confirm what you say...mind you, i aint got a clue...so i wouldnt believe me.....but if you want to........johnny
 
I fear no one here can help you. You have to be willing to help yourself. If you are concerned that something is wrong go to the dr. I really don't believe you have als but you have convinced yourself that you do. It could be something else. Why limit it to als? There are many diseases that mimic each other. Your dr has cleared you of als, move on to something else. It is a process of elimination and it takes time some times a long time.

I think some of it is anxiety and the more you dwell and fret and search the worse it will get. You need to relax, go do things that are enjoying. You are wasting time on this and it is time you will never get back, no matter the outcome of your tests. I wish you peace.
 
Hello everyone! I'm sorry I know I must sound like I'm obsessing and that's because I am. I am just so tired of feeling the way I feel for the past 14 months and still have no answers. But that sounds like a lot of people's stories, not just mine. I know there are a lot of people going through the same thing as me. That's why I am just trying to put it all out there, just trying to get some answers. I thank you to everyone that has helped me already. I will know more in August, I will just try to hang tight until then.
 
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