Lostandalone

Hi lost alone how r u

Hi, how are you any updates?
I’m still twitching like mad. Another emg this week.
No real weeknees but my legs feel rubbery?
They say it’s anxiety, I’m having a hard time believing it.

I still have bathroom issues- but drs can’t figure anything out .

P.S.

I forgot to mention that i seem to be hoarse all of the time and continually have to clear my throat while speaking, which is new. Also, i occasionally have such terrible reflux that it actually flows up into my mouth at night, this is also new and started well after the hoarseness began. I tire easily and become short of breath with minimal exertion, no headaches so far.

Keep me posted with your s/s!

Hi Kim...

I have muscle atrophy between my thumb and index finger on the back of my right hand and i can see fasiculations there that i cannot feel. My right arm is weak and I have frequent aches in both forearms. I have muscle twitches in my elbows and more recently in the palm of my right hand between my thumb and index finger. The front of my neck cramps on both sides, more so with yawns or sneezes. Both legs twitch, even my arches in my feet sometimes. It's worse after exercise at times, other times it doesn't seem to matter. I've only had the one EMG and NCV this spring. I think you can relax more since you have had several negative ones.

Keep your chin up!

April

Hi April,
Yes, it all is scary. I'm doing better emotionally, but still have symptoms. My throat is most notable and hurts to talk which has been going on since mid June with no improvement and worsening. I wake with a headache every morning. I have non-stop twitching and focal twitching in my right knee area and thigh. My finger joints ache with stiffness as well as in my feet/legs. I have been doing gluten free for the past 2 weeks.

What are your new things you are noticing? I will look into the theracurmin as well. I hope you are doing okay as well.

Hey Kim...

I see you are back lately. Are you ok?

It's scary, isn't it? I've been noticing new things lately. Sigh.

I did start theracurmin. I figure it can't hurt, anyway.

J hope you are ok.

Hang in there...

April

Hi Kim,

So glad to hear such reassuring news! I try to stay away from the forum, but continue to allow myself to be drawn back here. I am working with a doctor regarding my positive Lyme titer, she is concerned that i may have co-infections. I also have Lupus (which i have had since my 20's and has been relatively benign), and Hashimoto's disease. The doctor wonders if the fact that I've had autoimmune diseases for over half of my life might be causing some of my symptoms, which is similar to your doc's theory.
I'm going to focus on anti-inflammatory foods and supplements as well. I have no way to send you my email address as i don't have private message privileges, but i will check here from time to time to see if you have updates.

Take Care!

April

Hey Kim,

I'll be thinking of you tomorrow. I hope you get reassuring results from your EMG. Are you going to have a nerve conduction study, too?

I've been trying to do everything i can to challenge myself physically while I still can. I guess that's a great philosophy to embrace regardless as none of us knows what tomorrow will bring.

I also started an antidepressant which has helped tremendously.
I am glad your coping has improved as well.

Loads of luck!
April

Hi Kim...

I continue to have symptoms as well, some of which are worsening with time. I haven't followed back up with the neuro as of yet. Please let me know how your EMG goes on Monday. I am going to start taking theracurmin in addition to my current meds and am looking at an anti-inflammatory diet. I believe it can't hurt.

April

Hi Kim...

Just wondering how you are doing? I've noticed you haven't been on here as much, so I hope that means that you've been improving!

GOD bless you,

April

Hi, sorry this site is a little confusing- I didn’t see you message.
I am still having the same symptoms but had another emg that was clean even though I twitch constantly.
Another private symptom I didn’t post but since our symptoms are the same I will mention- my bathroom habits are messed up at the moment.
Either constipated or exact opposite.
I finally saw a dr last week that said they gluten free for 2 months and well crazy but my twitching has been a little less and I actually had a normal n2 today.
But still very scared. Too much varied info online.
How are you?
I thought about posting on the site how I felt a little better from excluding certain foods but still don’t feel certain. Look up celiac and look and the symptoms.
Crazy similar?

Hi again, Kim,

I just wanted to say I hope you don't end up diagnosed with anything serious. I just re-read what I posted and I realized it was pretty abrupt.

Have you had your thyroid checked? Lyme disease?

Hopeful for the both of us!

April

Hi Kim...

I'm so sorry you didn't feel as if your concerns were properly addressed. I understand exactly how you feel.


I vacuumed a few minutes ago and am now having twitches in my right upper arm, which is the arm I used to push the vacuum. I never had twitching after vacuuming before all this started. The other twitching continues randomly. I know I have decreased endurance and decreased strength, but as I've been a nurse for 25 years now, I was very strong physically and was able to spend 12 hours on my feet without batting an eye. So the difference, while obvious to me, is imperceptible to physicians. As a nurse, I'm also aware that people with health anxiety are often viewed through a different lens. I'm ashamed to admit that I've been guilty of that myself.

I have a strong suspicion that it's only a matter of time until I/we end up in the "newly diagnosed" section. I pray i am wrong on both counts.

Keep in touch!

April

Having a terrible sore throat where hurts to talk. Been to ENT confirmed hyper addiction of larynx and have me in voice therapy. Now why all of a sudden is my voice hoarse and constriction of voicebox? Also, I have had increasing stiffness in fingers. Woke one night with one finger and every day seems to be increasing to other fingers. I am also waking with fingers going numb. The twitching won’t stop and now cramping. Had two Charlie horses in calf last night. I’m scared out of my mind . And what’s most frustrating is everyone seems to be brushing me off and putting all of this on anxiety. Of course I’m anxious but all this isn’t from that. I wish it were. It’s like doctors won’t take you serious if have anxiety.

I’m so fearful and cry all the time. I can’t face this disease. It’s just me and my son.

Kim

My appointment was uneventful. He found some assymetric reflexes that he said were minor but didn’t find any clinical weakness which I know anyway. He said he is more of a clinical neurol and doesn’t do much testing. I was hoping for a full emg to get reassurance. I am so convinced as not sure what else could be causing my increasing issues.