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MBD67

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Please forgive me if I'm way off base here. Plus I'm not real good with grammar. I did read the stickies and still am a bit concerned with some things. Thank you so much for reading. Im 53. I was looking for some advice.

For about 4 months I've noticed some phlegm buildup in my throat and it goes weak in the afternoon. Changes in pitch. Not all the time though. They are treating me for acid reflux but I've had it before and know thats not it. I've been super foggy headed as well. Not like me at all.

4 weeks ago I started noticing my thumb drawing up and twitching. Since then I have developed body, muscle twitches all over, even my face. (the worst of it at night) Also, I've not slept hardly any at all in 3 months. Only about 3 solid hours a night if that. Every time I start to feel myself start to drift off something happens in my throat that wakes me straight up. They said I didn't qualify for a sleep study. I can even hear weird noises sometimes from my throat region. I can eat food but it seems like the last fragments of food are sticking in the back of my throat and under tongue. Pills seem to stick as well. Had a swallow test that they said was normal. CT scan of head and throat, normal.

I feel like my whole body is vibrating at times and hands often tremble. I've lost 15 lbs in 3 weeks. I was a very fit individual that lifted weights 5 days a week and crossfit 2 days a week. All my joints are now popping if I try to exercise and I know I've lost muscle structure. I get more winded easier too.

My pcp and others tell me it could be anxiety related. I did see a counselor. I was put on zoloft. It makes me yawn and the yawns feel super weird too. I realize I'm anxious about it but I also know my body and something is not right at all. I have not experienced a super weak limb but each day they seem to get weaker as I'm waking up. They will spasm when I sit down at times. I have dry mouth and eyes.

A Dr gave me the push , pull, etc coordination test and said it went ok and to work on my anxiety. My pcp has said he is referring me to a neurologist but we are from a small town and it could take a while before I can even get an appointment. I'm hoping that it is anxiety related and I can get passed this. I can maybe relate the spasms and weakness to lack of sleep and anxiety. The whole sleep problem is some kind of weird that I can't explain. They have given me several sleep aids and none seem to help.

Thank you again for your consideration in answering me.
 
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MBD67

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Thank you very much for this forum and for allowing us to seek advice. I have found myself finding comfort and much help while reading here.

I would like to get some help and advice from anyone that might can advise me.

I know I have not been diagnosed but I'm not sure what else it might be. Doctors are trying to rule out everything else before they get to the neurological aspect and I understand that. But all this seems to be snowballing since my previous tests and visits.
My voice has been slowly changing for about 4 months and getting weaker (ENT said structure looked good) but no slurring, mucus, lots of muscle loss(all over) Fasciculations all over my body, even face for 2 months, I have the tongue fasciculations bad at night, can't sleep much at all, all joints are popping, some swallowing trouble with smaller bites and pills. Some gurgling when I drink, very shaky, lungs seem to be working much harder and I'm getting out of breath much easier now. That is not normal for me because I was used to several workouts per week with no problem. The only thing I have not had is any failing limb. I feel very weak though and easily fatigued. I am self employed and my business is failing because I'm not able to work like I did before and Dr bills are mounting because of all the visits.
Please forgive me if I'm assuming to much.

My issue is early on, doctors told me it was anxiety.
Finally after the weight loss they did refer me to a neurologist but Im afraid it will be a long time out before I get an appointment and things are changing daily.

I feel like I'm dealing with this all alone trying to navigate these symptoms and figuring out what to do.
If I start having more breathing trouble or swallowing trouble Im not sure what to do? Seems to get worse daily. I also wonder how far along I am in this process or what might be to come? The last pcp visit he just said " I hope you get to feeling better"
No one has really listened to me. They have just said anxiety but I'm pretty sure it is more than that.
I realize this is a very vague, scattered post and might not make much sense but I really don't know what to do or who to turn to. Seems like Doctors have exhausted all resources until I get a Nero appointment which they are none in sight.

Thank you guys for giving your time to people like me that are looking for some opinions and help. Any advice will be greatly appreciated.
Thank you.
 

Nikki J

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Have you had pulmonary function tests? Your pcp could order. you can’t diagnose ALS that way but if they are normal it would rule out a number of respiratory issues including the breathing issue being an ALS symptom.

A swallow study would also be helpful.

i realize it is more difficult to schedule things these days but those 2 tests could tell you a lot
 

MBD67

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Thank you for this response. About 3 weeks ago I did have a swallow study that they said was normal but I know when things feel like they are stuck. Its usually on the tail end of eating. The smaller left over pieces don't go all the way down and seem to hang. I have not had a pulmonary test I know of. The breathing trouble seem to show up all of a sudden 4 days ago. Simple walking is getting me short of breath.
 

MBD67

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Please forgive me if I'm doing this wrong. Feel free to put me in my place. I totally understand. I still have all issues I listed in previous posts. I won't post those again.
I am having a time getting a Neurologist appointment. They all just say I have your referral. Long waiting list. Trying to navigate these symptoms on my own is tough.
In the meantime does anyone have advice on calming down the fasciculations? They have really ramped up all over including my face. I am taking magnesium but can't tell any difference. Thank you for any advice anyone might have.
 

Nikki J

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The more you worry the worse they will be. The usual advice is to make sure you are hydrated, well rested, limiting caffeine and managing stress.

try to ignore them As best you can. sorry it is hard to get seen
 

MBD67

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Thank you again for your kind response. I try to relax (Dr put me on zoloft) but the fasciculations keep me up most of the night and make it hard to rest.
I agree I do need more sleep for sure. Its hard to find a right sleep combination.
Dr gave me valium and xanax for insomnia but i read if it is a neurological issue those are not good so I tried Tylenol pm. Still not much help but a bit better. I actually don't drink hardly any caffeine. I probably could increase my water intake some though.
I try not to stress to much but its hard not to sometimes. To many things going on at once. I would contribute it to stress if not for all over muscle loss. The fasciculations started on my face today heavier than usual which is bothersome. I hope this is all stress related but I'm just not sure. Thank you again for your good advice. You are very kind to answer my question.
 

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Tylenol PM uses the active ingredient in Benadryl (diphenhydramine) for sleep. If you want that to knock you out, I'd just take diphenhydramine by itself rather than put acetaminophen in your system if you don't need it. However, diphenhydramine is not good to take long-term, so a non-drug strategy is preferred.

Xanax and Valium are in the same class of drugs -- benzodiazepines -- which are more dangerous (sedating) and not something to take two of, so I certainly wouldn't take them just to sleep, nor in combination with the diphenhydramine.

Either of these classes of drugs can dry you out, swallowing-wise. You can see a counselor on video and I would recommend trying that while you wait for neurology. There is nothing to lose by talking this through.

Best,
Laurie
 

MBD67

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Hard to believe. The earliest I can get an appointment in Charlottesville is in May. Waiting on calls from other referrals. Things are definitely progressing fast. Not sure from day to day what will get worse.
I have all over muscle, fasciculations. Visible muscle loss everywhere, body jerks. Almost every joint I have is cracking. As of now I have not had any failure but I feel weaker daily. I'm still trying to work but if feels like any day I could have some type failure.
Again, I'm sorry for continuing to post or seem like I am panicking but I have no help from any Dr to guide me through or let me know what is going on. I just hope one of these referrals get an earlier appointment. Thank you guys again for giving us this outlet to at least be heard.
 

lgelb

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It is much more likely you have a muscle problem than a motor neuron problem. I understand that medical appointments are hard to come by but if you can speak with a counselor by video, which is usually less difficult to do, you will have someone to discuss all this with in a more organized way.
 

MBD67

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Thank you so much for your response. You are very kind. I have been seeing a counselor to try and help.
I would like to think it was just a muscle problem.
I have been a weightlifter for many years. I weighed around 182 lbs 4 months ago and now I'm under 160. Tons of muscle loss. I can put strain on any muscle and you can just see them fluttering bad. My tongue worries me too and the all day head to toe fasciculations.
It seems I get weaker by the day. I know I'm not a Dr and should not try to be but with no Dr helping me I have to research myself and what I find is not looking good.
I really appreciate you and your insight. I just have that gut feeling something is bad wrong and I wish I didnt. I'm not sure what would come first, wasting or failure? I have had so much muscle loss I have a feeling failure could happen any day. All my joints are cracking and popping. Thank you again for offering your knowledge to me.
I am sure open for much more . You guys give me your ears and advice. Much more than I'm getting from my health system. Thank you.
 

MBD67

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I just wanted to give an update. Thank you guys very much for all the previous advice. I met with a neurologist today. They worked me in after hearing of my symptoms. I am still feeling all the twitching all over from head to toe. I told him about my tongue and face fasciculations but he didn't see to concerned. I had lost 20lbs( lots of muscle) and he said he bets it was a lack of protein. I'm sure that is quite possible. He did an EMG.
He asked where most of my twitching was? I explain all over.
He decided to do the EMG and nerve conduction on upper body. He said no ALS after he was done. I'm not sure how to read the report so ill attach pictures.
From what I understand from you guys its not necessary to do lower body since upper looked ok?
I will try and put my anxiety aside and move on. Although relieved, I still was wondering why all the continued fasciculations and very visual muscle loss. l'll accept the Dr's report and see if they go away. I will not seek a 2nd opinion unless anyone feels I should.
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Thank you very much for allowing me to seek your advice.
 

lgelb

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As the doc said, no evidence of ALS here. If you are really protein-deficient, that can cause a variety of symptoms beyond weight/muscle loss, so if that is a possibility, I would see a sports nutritionist online and discuss your food/activity diary.
 

MBD67

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I really understand if I'm told to go away or stop being anxious. I'm just trying to understand something and get advice on what my next steps might be.
I'm 3 months in since my first fasciculations. About 6 months since my throat started randomly changing pitch and phlegm buildup.

After my EMG/ nerve conduction (both arms, hands, neck) last Thursday I was told it was negative. (I posted results in an earlier post). They never really explained much and it didn't last to long. I had a since of relief after the appointment.
The Dr seemed to not look into my concerns about my tongue, face/neck fasciculations or muscle loss. The Dr's nurse even told me I should feel good because I also had a clear CT scan. I even realize a CT scan does nothing to help diagnose neurological situations.
I feel like if this was ALS it would be more of a bulbar because of my throat and tongue symptoms ( no slurring or loss of strength though) Would an arm EMG help figure that out?
He did do another push, pull, balance etc test. All was fine there.
Now comes my continued concern.

The last few days has been some of the worst days I've had of fasciculations all over and body tremors.
Also stinging in my lips, throat sounds and weird sensations on face and throat while trying to sleep. Wobbly legs while walking downstairs. I still have decent strength. My joints are also cracking more, hurt from time to time and muscles still disappearing all over. I have a nightly fasciculation below my belly button that lasts a long time.
I know I should be relieved with the good EMG but Im not feeling much sense of relief now. Since EMG was negative
I feel my Dr will not be able to do anymore referrals unless something gets way worse. Believe me, I don't want to seem like I'm chasing a disease but I can't wrap my mind around what might me causing all this so I have to investigate myself.
I understand many have ask you guys these same questions and i do apologize for repeating them. Without having anyone to guide me through this process I feel your advice at least helps guide me in some way. Thank you very much for your consideration in trying to help me.
Yours thoughts, whatever they may be, are truly appreciated. Thank you very much.
 

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You don't have signs of ALS (you have been cleared via clinical exam AND emg), so this forum is not the place for you. While the folk here are sympathetic, there are a few reasons why you should leave it behind- the biggest one, other than you not having ALS, is that remaining here only serves to add to your anxiety about it.

People seem to think a recommendation to find a counselor, therapist or other such support is a dismissal. In your case, I sincerely hope you do ask your doctor for a referral, as this type of help while you also track down what is wrong can be invaluable. In your post, you spoke of not having anyone other than this forum to guide you- these are the exact type of people you want to stand beside you for support while you search. I can not recommend it enough as they will have insight, can help you navigate your medical system and help you while you continue to seek help for your physical symptoms.
 
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