Hi,
I just had an EMG.
I wonder: Do any of you experience sudden muscle stiffness /heaviness in say your buttocks to back of legs that then goes away?

Anyone out there with LEMS? I Have trouble around the eyes and neck, legs but NOT with eyes as such. Have a tingling sensation, rather like soda in arms and legs and upper back region.

It'll take a month at least before I see the neuro about my symptoms. Am really worried.

ANY input would be comforting. Thanks to all those who welcomed me in the Newbie part of the forum

Hi inquisit!

Welcome to the neighborhood!

Sorry but I have not noticed these types of feelings. My symptoms are mainly weakness in my neck, arms and legs and extreme fatigue. On my bad days the weakness is where I can barely walk. Ex. I started browning hamburger meat tonight and had to stop....my arm was too weak to finish.
I've never noticed just one particular area like that.

When will you get the results from your EMG?



JJ

Welcome!

I can't say I have experienced what you describe. Try not to worry to much though (easy to say! I know). Waiting for the results can be so stressful.

Take care,
Sue

Inquisit, Welcome. I'm sorry you're worried. I would be too if I had sensations of soda pop fizzling in my back or arms - or anywhere! I can't imagine what that would be. Have they done an MRI of your lower back?

If you think you need to see your neuro or someone else sooner, either call his office and say so (they always have emergency appts.) or go to the ER. Do not let their busy schedule get in the way of your health needs!

I don't know anyone personally who has LEMS. It has similar characteristics of MG but people can also have a higher risk of some cancers. When was the last time you had a chest x-ray?

With any of the myasthenias (MG, LEMS or CMS), you can have sudden weakness from overdoing things. Can you remember if you did more with your legs/back (and butt) before that happened?

I hope you will get answers and help soon. It's scary to have something wrong and not know what you can do about it yet. Please seek out help sooner if you need to!

Annie

Inquisit,

Welcome! I don't know if this is the same 'feeling' or not....but before Mestinon, I used to feel like a had 'little bugs' rapidly crawling under my skin. Not all the time, but when it happened it could literally make me think I had a 'little bug' crawling up my arm or leg and I would look quickly to brush it off!!

Anyway, it has stopped since I started Mestinon and we think the sensation was lymph moving. When my muscles weren't properly supporting my 'skin' lymph - I used to get a lot of 'puffiness'. Sometimes to the point of fibrotic swelling (that was treated with compression devices).

Anyway - ALL of that is gone (it took a few months) since Mestinon. Coincidence? Don't think so....my neuro told me to expect this when I was given my first script.

Sue

Yes! Yes! Yes! I have those sensations as well! After NUMEROUS MRI's and x-rays, my neuro still has no idea what is going on...I also have serious pain that keeps me bed ridden some days - in the hospital I was given morphine every 3 HOURS to keep it @ bay, but it has subsided since I started Neurotin (sp?)........what a RELIEF!

I now walk like an 80 yr. old, but @ least the pain has gone AWAY - I do still get the stiffness - hence the walking like an 80 yr. old - and I still have the tingling sensation but have learned to kind of ignore it......

What meds are you on?

If I ever do find out what is going on I will let you know!

BTW - welcome to neurotalk! As you have already seen, there are so many amazing and truly caring people here who know what you are going through! You are going to love it here!

MG effects all of us in different ways - that is why it is nicknamed the "Snowflake" disease....some of us have "mild" - if you can call it that, ocular MG, while others have acute MG - not fun! Regardless of the DX, all of us suffer quite a bit with MG - that is why I love this site! People do not judge you b/c they KNOW what you are going through.....

Anyway, I just wanted to welcome you and let you know that YOU are NOT ALONE!

If you find out what is causing the problem, please let me know!

Big hugs!
Erin

Hey inquisit,

Welcome to the group! I can't say I've experienced the symptoms you described. If it continues maybe you could call your neuro and get an earlier appointment. Sorry I couldn't be more helpful. Take care and let us know how you're doing.

Hugs,
Pat

Thank you for the positive support and hearty welcome! God knows I need it. I still haven't got a diagnosis, the neuro doesn't take phone calls and it wil be another three weeks before they've done all the calculating on my EMG, and an additional number of weeks before I see the neuro after that.

At the moment I'm feeling rather low, because I have a hard time with breathing and to visit an emergency ward at a hospital you should be half dead. Since I don't have a dX they can't do anything anyways.....

I'll just have to drag on. The muscles around my eyes are really bothersome, as they feel weak or tight or something like it. Today I had a really hard time dragging myself home from work, my legs wanted me to lie down. I'm 53 and I read that if it's MG, I will have the worst case since it presented itself fairly late in my life. Bugger.

I dont have a diagnosis either! So dont panic. I had one then it was removed a year later as I'm negative on all blood tests and SFEMG and EMG. I hope for the day that someone just gives me an effective treatment, I don't call what they want to call it, Purple Pixie Disease is fine by me! LOL I just want to be treated and get better.

I know what you mean about going to A&E (ER to our American/Canadian etc Friends). Ive been in 6 times so far this year, not all with breathing problems. I get fed up with the "haven't you got a diagnosis yet" or "hasn't he made up his mind yet?". I hate the fact you lay on a hospital trolley for 4 hours until they decide you better be moved to a ward or discharged. I have spent 3 visits in a hospital bed for 5 days with no treatment. It gets frustrating, but it must also be the same for the staff as theres really no reason to keep me there unless you are actually going to do something.

With MG you just don't know how your going to be or how the disease will progress. Just because you are 53 doesn't mean that you will have the worst type. What you will learn on your journey is the medical profession know quite a bit about MG but they dont know it all! As patients we are the ones that know how it affects us.

I hope this helps
Love
Rach

Hey Inquisit,

Any breathing difficulties should be taken seriously. You said your neuro doesn't take phone calls, but can you call his office and have someone there relay a message to him? If it continues or gets worse you should be seen by a doctor.

I think I have an idea how your eyes are feeling. It's hard to describe some of these symptoms. Have you tried putting a cool cloth on your eyes and just resting them for a while? It may help. Resting may help your legs and other symptoms as well...listen to your body. I've said this before...if your push MG it will win every time.

As far as your age goes...I'm 57. I was diagnosed when I was 49 after having symptoms for at least 3years, and had a thymectomy at 50. I was in pretty bad shape at that time, but I'm doing so much better now. With the right neuro and treatment you will be feeling much better...it just takes time. It's always very hard in the beginning, but try to keep a positive attitude. I know that's easier said than done. Just know we are all here for you. In the meantime take care, feel better and keep posting!

Hugs,
Pat