The Waiting is The Hardest Part

[burton 3232]

"Every day you see one more card"
A big hiya to all and thank you for this forum. Means the world to everyone struggling, diagnosed or not. And this forum is a BIG help, so thank you sincerely esp. to PALS and caregivers.

I've read the stickys, gonna break all the rules sorry. Just trying to get through like you are. I have questions and advice both, so here goes:
I'm 60, male, healthy I thought until now.
Recently have fasics in both calves, shortness of breath (when swimming at the Y on heavy exertion), stabbing pain for a few seconds all over body. My left foot feels like it's going to drop, but that may be anxiety, not sure. I've been lurking on this board for a while, so I know that stabbing pain is more of a MS symptom than ALS. Other symptoms have improved: tight forearm muscles on both sides. I know this is not typical of ALS, to improve.

Anxiety through roof. Fear I was exposed to pesticides 4 years ago.
Because I used to smoke dope. Not like the kids today with street drugs: in the classical sense, cannabis.
4 years ago (in NY) a new product came around, 'Dank' brand cartridges. A cartridge is concentrated cannabis oil. Bright packaging, good taste, reasonable price. I stupidly thought they were a legit company. They are not. 'Dank' was just packaging sold to whoever, some being unscrupulous people filling cartridges (carts) with unregulated oil. Some kids died from vitamin E acetate that went into these carts, some got popcorn lung. So they are not harmless cannabis carts like I thought I was buying. Turns out, 84% of cannabis flower is contaminated with either pesticides, herbicides or fungicides. And when you concentrate the flower into cannabis oil, you concentrate the contaminates.

So here's the one more card: pot is not harmless. It is legal but unregulated in NY. There are no dispensaries, meaning it's still a street drug here. You can buy it at the gas station down the street. I did often. And even in the best of regulated states (like Oregon), much of it has pesticides. Esp. the concentrates. So consider that if you are using cannabis or CBD for you pain or anxiety. I highly, highly suggest organic cannabis. And I also recommend ingesting it rather than smoking it, just a word to the wise. It's really not the same pot that you smoked as a teenager, trust me.

All this has caused extreme anxiety as I now have some very guarded symptoms. I have a neurologist appt. on 7/6. I can deal with the symptoms, but not the anxiety. Had to go to my primary and ask for Xanax. Denied. Went back, told her I was in crisis. She gave me a script for 10 days. A blessing - immediately took the edge off. All of a sudden I can eat and sleep again. But she said my anxiety was at a level where I need professional help, and put it back on me to find help elsewhere. So tomorrow I am going to a local clinic to see if I can get a script.

So out of Xanax. Had to resort to drinking to keep heart rate down. Not ideal, but was close to panic. Don't judge, I have good character and don't want to drink but really the stress was causing chest pains, racing heart, sweating, hyper-ventilating. It was literally killing me, I could feel it. Found that White Claw seltzer is low sugar, low calorie and I don't get drunk, just able to sit in my own skin.

My questions:
1- does ALS present with bilateral calve twitching? Most posts I've seen here and on YouTube say that it is usually localized to one muscle.
2- what should I ask for at my appointment? An EMG for sure. NCV? My primary put in for an MRI - denied by my insurance. But they called me and said they would reconsider if the neurologist also requests it. So probably that too, no?
3- how do you deal with this terrible anxiety? Feel kinda self-conscious for asking for Xanax, but it really helped me. Isn't that the point of meds?

Thanks in advance for your help, ... Burton
"We take it on faith, we take it to the heart, the waiting is the hardest part" - TP

 

[Nikki J]

Calf twitching is not most common site for benign fasciculation syndrome. Twitching without clinical weakness is not a red flag for ALS wherever it is.

You should ask the doctor what is wrong with me? You can ask if they recommend an emg ( ncs is almost always done with an emg). What was the mri for? Question of MS? It is up to the doctor to recommend whatever tests needed to confirm their diagnosis or narrow their differential. They will base this on your history and their exam

I think your doctor probably wanted you to seek counseling to develop improved coping mechanisms. It is a fact that stress and anxiety make neurological symptoms worse whatever the cause. This is especially true of twitching. I strongly encourage you to get counseling. Neither alcohol nor xanax are long term solutions

You have an appointment this week. Try to do some healthy things to get control before it. I expect it will be reassuring

 

[burton 3232]

Thanks for your input Nikki ... very helpful and encouraging ...

 

[burton 3232]

So a quick follow up: I had the top half (arms) EMG done, went for my legs today, the machine was broken. Rescheduled. I don't mind so much, except for the anxiety. I've been drinking heavily to calm down, and finally got a script for Alprozalam (Xanax) from my neurologist. Thank holy mother of goddess. So sick of drinking.
While we were rescheduling, I saw that my arm results were normal as my neuro had my file open and was reading it. Not a diagnosis, but it looked promising.
I was denied an MRI by Fidelis, so will fight for that as I'm still worried about MS. I don't have health anxiety or hypochondria as they used to call it, but anxiety about my health. I have scary symptoms, as most here do. My calves are twitching right now, also stabbing pain everywhere. If the neuro tells me it's anxiety, I will believe him. And get on with my life.
Will report back after I get the results from my leg EMG. But wanted to reassure people in this forum that even though you feel desperate, it may just be anxiety. Have been doing a lot of research on YouTube about anxiety, and it's unbelievable how many shitty symptoms it causes that mirror major illness. So, bottom line, don't give up the ship .... and get a script for Xanax before you drive yourself crazy ...

 

[lgelb]

Thanks for following up, Burton. I'm glad to hear that you will be able to take the favorable result re MS that I expect and run with it.

Painful stabbing in a lot of places can relate to sleep and stress, for sure. A regimen like classical stretch, Pilates, [not heavy as you may have been, more mindful than speed or distance] swimming, etc. can really help.

Just a couple of safety notes for those who may read your recommendation for Xanax: If you have any history of overdoing anything, you should not ask for that rx. You should not drink and Xanax at the same time, nor drive, nor operate any machinery with a potential to cause injury if you are not used to everything you are taking.

My personal belief is that very few of the "worried about ALS" people actually need Xanax to function. I'm not doubting your story, but I'm doubting that it applies as broadly as you may think. As you say, you had a bad run with some stuff that really affects the brain. I would certainly consider counseling to get re-centered, given your level of anxiety, and you could get some help from that person with the mind/body connection that is likely contributing to your discomfort.

Best,
Laurie

 

[burton 3232]

So to close out, I have my results of the EMG. Slight sensory neuropathy in my left leg, carpal tunnel compression in my right wrist. I asked specifically "Do I have ALS?" He said no. I asked if I needed an MRI of head and spine, he said no.

I don't really understand why I would have fasics in both calves, and stabbing pain all over. But fascics are quite unusual in MS (esp. early MS). And stabbing pain is sensory and not typical of ALS. The BFSyndrome board specifically states that the calves are the most common place for fascics. Could just be from anxiety, not sure.

At any rate, I am going to take this diagnosis and run with it. I had the exact 2 symptoms 4 years ago, and they both went away, so perhaps with some clean living, I can get out from under them again.

I will make a donation to the ALS society, and a big thank you to all PALS and CALS on this board who have helped so many over the years.

Blessings to all, best wishes ...Burton

 

[ShiftKicker]

Burton, thank you so much for coming back to provide some closure for future readers here. The twitching and pain, while not related to ALS/MS must be such a niggling prompt to worry if something might be awry. Hopefully with the reassurance from neuro and electrodiagnostic testing that sense of worry will gradually subside along with your symptoms.

Take care