Vast symptoms... worried about Bulbar onset.

[KimT]

Hi Missy,

That's pretty good news! In the meantime, take good care of yourself, including sleep.

You remain in my prayers.

 

[MissyK]

Fear is creeping back in. The bottom of my left foot has been twitching non stop for a few days now, my feet and hands hurt. Fingers almost feel like they need to be popped... hard to explain. My left hand and arm are weaker than my right and simple things like trying to unroll the toilet paper with my left hand is becoming a challenge. I don't know where to go from here. My appointments at Mayo Clinic are not until mid July.

I can go back to the neurologist who diagnosed my glossopharyngeal neuralgia before going to Mayo but have to have repeat MRI of my brain and one of my thoracic spine begore she'll see me again. I hate to have the addition Gadolinium if it's unnecessary since I've had it 3 times in the past 5 months already

Of course I still have all of the symptoms in my opening post. Just stressing from the onset of these new ones.

Thoughts?

 

[KimT]

Hi Missy,

All I can say is that if I start noticing a new symptom, it will make everything worse. I was totally convinced that I had bulbar issues two years ago. I went to Mayo and they did a swallow and scope and all was well. Then last year I thought my tongue was twitching. Back to the ENT, another scope, another barium swallow test. ENT said it was just GERD acting up.

It was then when I decided to start addressing my other health issues besides ALS.

I don't think you have ALS but I do think you have some issues to resolve. In the meantime, I hope and pray you enjoy the Summer with your beautiful children. You know, it's not a bad idea to consider counseling. I go. I have friends with various health issues or anxiety/depression who get counseling.

Don't let fear steal your life.

 

[MissyK]

Thank you, Kim. I think counseling is a great idea. I've been sick for over 8 months now and it is really taking a toll on me and my family. With my hands and feet now being sore and slightly weak, fear is consuming me again. I wish someone would do an EMG to help set my mind at ease. I will add "find a therapist" to my list of things to do today.
Thank you for always listening and replying ♡♡♡

 

[MissyK]

I hate Google... I searched to see what could be making my hands and feet hurt and the 3rd thing that popped up was NMD. I swore I'd quit Googling after the ALS specialist said he didn't think that is what I'm dealing with. Now I'm worried he just blew a lot of my symptoms off because I told him I've got horrible anxiety currently. I wish he'd at least have done nerve conduction testing and an EMG. I feel so lost. I was told if I could get into the University of Utah Neuroscience Center, I wouldn't need to go to Mayo. I was seen at U of U and sent back to all of my docs who are stumped. Now I continue to wait to get into Mayo.

What would you all do? Should I call back chief of neurology and request to be seen again or to be given a referral to one of his associates to help find the answers? I hate to keep medicating with Xanax to sleep at night. By July I'm going to be addicted to the darn stuff. Strange thing is... the Neuro at Mayo requires an EMG before being seen. Nobody hete has ordered one.

By the way, I left a message with a therapist and am waiting for a call back to set up an appt.

 

[KarenNWendyn]

This is going to sound crazy, but can you take some sort of vacation where you completely get away for a week or two? It might help get your mind off all this, maybe.

I know when I was going through the diagnostic process, it was hard for me to shake the obtrusive thoughts. I think the best thing is to do things you enjoy. If you can’t get away, could you set up dates with friends or fun things you can do with your kids?

Whatever is going on, you can’t change it. But what you can do is try to change your attitude towards it. Counseling is a great idea, but so is doing things you enjoy. Meditation is also effective, as is listening to your favorite music, singing, doing creative things, and doing active things. This approach will serve you well no matter what is on the other end of your ultimate evaluation.

 

[Nikki J]

I would go back and talk with my internist. I go understand your issue about repeated gadolinium though it is supposed to clear your body quickly. Is there a solid reason for the repeats? If there is you probably just have to do it but that would be one thing to discuss.

It is not that unusual for a place like Mayo to ask for an EMG first. You can talk to your internist about that as well. I don’t know anything about the ALS specialist you saw but the fact that an EMG was not ordered means they were really confident on the not ALS. The next place you go try to ask what is wrong with me and what tests do I need to find out.

The diagnostic path can be very long and tricky so counseling will be a great support for you. Good for you for reaching out for that.

You need someone to work with that you can trust to help you to diagnosis. You said your internist was not happy with neuro 1. Is there another neurologist in the area they can recommend?

 

[MissyK]

She recommended the Chief of Neurology, who specializes in ALS. She felt if I went to him, I wouldn't need to go to Mayo as the U of U neuroscience center is one of the top 5 in the nation. I'm not sure if another neurologist up there will see me or not. The chief of Neurology did my internist a favor by squeezing me in. I think he only felt ruling out ALS was what she wanted.

I honestly felt better mentally after seeing him, but was frustrated that he had no answers for me nor was concerned with figuring anything out. Now with my hands and feet being so stiff and sore and my arms and legs hurting some too, I can't help but worry about ALS again. I worry he didn't take my symptoms completely serious after me telling him I've been a nervous wreck and started on Prozac and take Xanax as needed.

I will send my Internist a message and see what she recommends. Last time I saw her she said to stay away from Neuro #1 and to avoid the MRIs she ordered as Gadolinium is controversial.

I should never have googled as now I'm fearing ALS again majorly with my hands and feet. I have a toddler who needs me around.

I may have to undergo the MRIs to get further testing done locally if she can't get me into anyone else

 

[KimT]

Missy,

If you need simple closure on ALS, get an EMG. From your posts, I believe that it'll take an EMG to put your mind to rest. If that's the case, get it done.

It is possible that you have more than one thing going on and I understand how this can make you anxious.

Didn't the neuromuscular doc say you could come back?

When and if you go to Mayo they work as a team to diagnose. You might see three or four specialists and they work together to diagnose and treat.

In the meantime, it's important to get good sleep, reduce stress (I know...easier said than done), drink plenty of water, reduce or eliminate caffeine, and do things you enjoy.

 

[MissyK]

I saw my internist on Friday. She was very upset that an EMG has not been done thus far and ordered one. It will be done in 2 weeks. I need answers rapidly as I'm getting weaker by the day. This evening I went shopping to the mall... my legs and feet ached like I had a bad case of the flu. My left arm was so tired that it shook while holding on to the steering wheel on the drive home. Many times while shopping I felt like I couldn't go on... I had an exhaustion than I can't even explain. By the time I arrived home my tongue was burning, lips numb, and headache, and every muscle was in my body, including those around my rib cage, were weak and sore. I couldn't even get the cap off of the jug of milk. What in the world is going on?? The muscles under my tongue and my teeth ache as well.

 

[Bestfriends14]

Glad to hear that you're getting an EMG so quickly. With all your sensory issues, I'm not sure what is going on, but it points away from ALS, which is great. The EMG will help ease your mind as well. This will at least eliminate ALS as a possibility and hopefully get your docs on a better path to diagnosis.

Good luck and please update once you've had your EMG.

 

[MissyK]

With ALS would I have achy legs?

The numbness around my lips may be stress related.

I woke this morning miserable... almost as sore and weak as last night

 

[MissyK]

I have atypical Glossopharyngeal Neuralgia which is tolerable presently, but gets more painful the more tired I am as well. That may be what is causing my tongue pain. Although, it should only be painful on the effected side and my entire tongue hurts.

There is definitely something malfunctioning.... my feet and calves are twitching and cramping up really easy. Especially my right.

I'm about to go insane. If I do nothing, I notice every twitch, cramp, etc. If I am somewhat active to try and distract myself, I wear out and get so sore and weak. I can't win

If my EMG is abnormal, could it mean other things besides ALS??

Thank you wonderful people for holding my hand during all of this. I don't know what I would do without you all ♡♡♡

 

[Nikki J]

There are many reason for an abnormal EMG yes and some abnormalities are distinctly not ALS. There are also ALS mimics. A normal EMG should send you looking elsewhere- abnormal it will depend what it shows but even looking like ALS there would be other things to look at

 

[MissyK]

Karen,
I plan to rent a place in Corona Del Mar for a couple of weeks at the begining of June. We were there for a surgery I had in March. I wasn't up to sightseeing but loved what little I did see. I thought renting a home near the beach would be good for me. My hubby can't get away from work but two of my teenage boys can come along to help.me with my toddler ♡