NeuroTalk Support Groups - Another Newbie with questions!

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Another Newbie with questions!

Hello I believe I have MG. My symptoms are eye pain with minimal droopy, sjogrens-dry eyes-nose-fatigue, muscle weakness- I've always described it as I can walk-but not climb stairs-weak legs, can do chores but have weak arms etc. Any activity that requires repitition- sweeping, raking, hiking I've told dr's for a year now that the strength is there I'm just not able to access it --sounds like mg to me! Heat wipes me out! Doing dishes makes me weak(really hot h20).Shampooing hair (arms over my head)has been difficult in past. Shortness of breath- parathesia below knees-strange sensations like I'm on a fast moving waterbed only when I'm laying down with relaxed muscles. Blood test for achr are .30 (negative). What does it mean to have binding results? I will be seeing a nuero again on Monday-hoping to convince him! Last nuero noted unusual chronic denerveation! I do not have reflexes at ankles. Any advice would be much appreciated. In the last 6 mos I have been dx with Celiac disease(latent), Sjogren's (negative blood test-positive to Plaquenil) and now possible Mg---Whats goin on?

I'm glad you found our forum relatively early in your quest for a diagnosis.
You'll find lots of great support here!

I am NOT a doctor, but some of your symptoms (sx) are not in the MG realm; specifically dennervation, the strange sensations you've decribed, and the lack of reflexes. I have an MG dx, but have a second, as yet undx'd condition with many of these same sx's. They are currently looking at Peripheral Neuropathies, MS, Lupus, RA amoung other things on me.

Can you tell us what other conditions have been mentioned/tested for on you?

Also, you mention that you have seen more than one neuro? Can you elaborate a little on that?

Unfortunately there are many, many neuro conditions with overlapping sx's which is why, I think, they have so much trouble figuring us out!

Here is a link that can help explain your binding results and possible causes if it was the iron binding test I think it was. There is a type of anemia that can cause many of these symptoms, not to mention a B12 deficiency. Let's hope for the B12 thing, cause caught early and corrected it can be an easy fix!

http://www.nlm.nih.gov/medlineplus/e...cle/003489.htm

Believe me, we all want to get the dx so we can get on with our lives, but you want the right dx or it's all for naught. I'm glad you have a neuro appointment soon.

I would suggest you list ALL your symptoms going back to when you 1st starting feeling something was wrong, all your meds, OTC's and vitamins with dosages going back to the same time frame, any docs you've seen, any tests you've had (try to get copies and then make copies to give your neuro) and any hospitalizations, etc. Put it in your computer and print a copy for the doc appts. Put it in list form, to make it easier for them to scan for pertinent information - spreadsheets work well.

This will save you time and you can update it as needed. It helps them to get a good overall picture, too, and you don't have to worry about forgetting things as much.

Please ask as many questions as you like - we all understand how frustrating this all is! Let us know how your appointment goes and what tests are scheduled, as we have some AWESOME researchers in this forum that have found information that the docs either don't know or "forget" to tell us that can affect test results!

I hope some of this info helps a little, and that your neuro appointment is real productive!:hug:

PS. I LOVE your daughters name:p!

Quote:

Originally Posted by beckysmom (Post 495499)

Hey Becky's mom!

Welcome to neurotalk! There are so many amazing and wonderful people here! You are gonna love it!
-
As for your symptoms: the droopy eyes, muscle weakness, fatigue, problems shampooing, etc, heat intolerant do sound like MG.........

I remember not even being able to lift my head or body out of the bathtub when I was weak - I take SHOWERS now - LOL!

Becky is soooooo right! Please take a list of all of your symptoms to your appt - my GP said she knew what I had once she saw my list -plus it will help alleviate any white coat symdrome forgetfullness.......

I hope you get your dx soon!

Are you on any meds right now? If you are having problems breathing, please, please take it easy! That is one thing you really don;t want to mess with - ever!

It will get better! Truly!

Cant wait to hear from you!
Erin:D

Quote:

Originally Posted by beckysmom (Post 495499)

Hi, Just wanted to drop in, and say that some of your symptoms are pretty general to many other diseases. It's really important to be checked out thoroughly by a Neurologist who has other MG patients.
Some of the test's you should have had are Emg,SFEMG, Tensilon test, Blood Work...etc.. And unfortunately, even then, it may not show up. But if they give you Mestinon, and you feel better, it's more than likely MG.
Best of Wishes, and hope it turns out to be something that is easy to fix.

Maxwell's mom is sooooo right!

I know that after my first little sip of mestinon I felt the results! I was actually able to CHEW and swallow ice.......I cried b/c I was so happy!

I went to my room and told my hubby about it......I was soooooo weak @ that time - it was really awful!

Mestinon is really great stuff as long as you do not take it on an empty stomach - otherwise get ready for terrible upset stomachs!

Hang in there! It does get better!

Big, big hugs!
Erin:D

Hi Again, Was curious about something you said. You said that it's like the energy is there, just can't move your muscles. When I get weak, and remember we're all different, this is why it is known as the Snowflake disease, as we may all have the same disease, but it affects us differently, hence, no two are alike symbol.
Anyways, when I get weak, I know the Energy isn't there, and I better get indoor, or go lay down, or my body will fall down, and it doesn't seem to matter where. Stairs are an energy killer for me, and so is doing laundry. (folding mostly)
Sometimes, I'll be reading a book, and every 15 minutes or less, will have to close my eyes for 20 minutes or so, as my lids want to close, as though I am about to fall into a deep sleep, with out the sleep feeling, just heavy lids.

Now, having said that, I should tell you some of my other medical problems, I am a Narcoleptic, I have Dysautonomia,Mild Pulmonary Hypertension, Raynauds, Prednisone induced Diabetes, stage 3 kidney disease, acid relux, anyways, those are the biggies. So, I do have cross symptoms, but the above is definitely MG related.
Also, If I'm active today, I'm usually weak and tired for a few days afterwards. I have a saying.."NO Good Day goes unpunished" And it's true with MG. An Expert in MG once said, "the only thing predictable about Myasthenia Gravis is it's Unpredictability" I wish i could remember his name, but it escapes me now. He was at the MG conference, I believe 3 years ago.

Could you make a list of all your symptoms? I'll try and help as much as I can. Since being diagnosed in 2004, I find myself reading, and keep myself updated as much as possible on this disease.
Best of Wishes.
Oh, and Erin is right, take Mestinon, mine are in pill form, with food, other wise, you'll be sending someone to the home depot for a good strap, to strap that toilet to your behinder..At least this is the effect it has on me. I have a prescription to combat that part.
One last thing, before going on any MG meds, especially Prednisone, please please, educate yourself first. I was first put on in before I even left the Hospital, never heard of it, didn't know anything about it, until months later, which is too late, really. Although, it has saved my life, it comes with tons of baggage. You can Never just Stop Prednisone, ever. Very dangerous to do so.
And for some, the body can't get off of it. I've been on prednsione since 2004, and right now, my body can't get off of it. I crash terribly. I'm so thankful for it, as it did save my life, but on the other hand, not a big fan of it at all.
Love Lizzie
Keep asking questions.

Sorry, I keep forgetting. No Reflexes usually is Not a sign of a neuro disease, quite the opposite. If your legs are really flying when they hit your knee, that is indictive with neuro muscular diseases. And it can be a sign of B-12 problems. No reflexes, can be a sign of pinched nerve, or nerve damage.
Love Lizzie

Symptoms and MG?

My muscular weakness I can describe as easy fatigueability, I have strength but waning. I can walk around the block but cannot hike or climb stairs without profound muscle weakness. I can lift myself from a sitting position but no way could I do a deep knee bend. I can lift my arms over head but need to rest them to re-energize. Within minutes my muscles can re-energize but now they are more fatigued, this can continue for awhile then I'm just wiped out noodly. My legs whilst short hikes- I can't hop down just 6 inches I can't trust the strength in my legs to give enough support. Heat absolutely wipes me out--I avoid it like the plague. Shortness of breath has been aleviated by the plaquenil prescribed for sjogrens.I'm allergic to molds certain trees and dust mites. My diet consist of gluten casein mold-free diet. And I still have problems with diarrhea-weakness brain fog. My last nuero appt I was told that I have Leaky Gut- Multiple chemical Sensitivity-Liver toxicity= my nuero is alternative medicine- the problem is curing these problems doesn't appear to be working and actually my problems only get worse.

something to think about!!

This may not mean a thing, but my neuro doc told me I didn't have Lambert-eaton because my reflexes are intact....they are absent in LE......just a thought.....still trying to educate myself re neuro-muscular diseases...
Dottie

Your symptoms sound just like mine before I was dx'ed..........I couldn't climb the 3 stairs to my front door - I fell in fact.....I was easily fatigued and can't do any deep bend exercises to this day - lol! I couldn't even blow dry my hair - my energy would just give out on me..........

Just please,please take it as EASY as possible until you are on meds.......pred can really help, but it does come with some side effects - granted I am still grateful b/c I am able to lead a pretty normal life - gotta love that!

MG will wax and wane, but it does get better! Back in the 60's, it was pretty awful, but modern medical advances have made it able to most of us to lead pretty normal lives- I mean I won't be climbing Everest anytime soon, but I am HERE and can take care of my fellas!:D

IT does get better! You will feel better! You will need a great neuro, but I promise you that once you get dx'ed and your meds, you will love it!

Big hugs!
ERin:D

Quote:

Originally Posted by beckysmom (Post 497761)