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Old 05-31-2012, 10:35 PM #1
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AnnaMarie AnnaMarie is offline
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Hello, my name is Anna and I'm currently not diagnosed with anything. Here's some history.

In 2009, I began having fatigue and migratory joint pain. My doc thought I might have had RA or SLE but he wanted to rule out other disorders first. I had a Colonoscopy/Endoscopy in December of 2009 and found out that I had Gastritis. Everything else was fine so he referred me to a Rheumy. I was tested for both RA and SLE from 2010 to early 2011. My Rheumy informed me that my Anemia was getting worse which was news to me, I didn't even know my iron was low. He felt that the Anemia might be the cause of my joint pain so he sent me back to my doc. For some reason, the joint pain stopped on its own in mid-2011.

I had a couple months without any fatigue and joint pain until a week before Thanksgiving when I could barely move because of muscle weakness. By December, I was walking with a cane, having difficulty climbing stairs and lifting my arms, my jaw would become weak making it hard to chew. The new year brought more problems. In January, I began having shortness of breath on exertion. My voice started changing in February. My doc informed me that I needed to go back to the Rheumy because my SED Rate was high. The Rheumy said it was elevated but not extremely high and that my muscle weakness needed to be looked at by a Neuro so he referred me to a Neuro-Muscular specialist for an EMG and Nerve Conductive Study. Both came back normal.

In March, I went back to my doc for a routine check-up. I informed him about the EMG and everything and discussed my shortness of breath with him. He did an EKG and PFT, both came back normal. He did another round of labs, checking my AChR and CBC. My AChR came back normal. Unfortunately, my iron's low again.

I had my initial consultation with my Neuro in April where we discussed my symptoms and new issue - difficulty swallowing. It was at that point where he mentioned MG. I was a little confused by this. I thought the "hallmark" of MG was droopy eyelids and double vision, which I don't have. He informed me that there's a small percentage of people with MG that don't have ocular weakness. I told him that my AChR came back normal so he's testing me for MuSK. He said I could still have MG, seronegative.

I saw my appointment Neuro today - MuSK antibody test came back negative. I'm not officially diagnosed with MG but he called in a prescription for Mestinon to see if it works. Last month he checked my reflexes. My ankles, knees and wrist reflexes were strong. My bicep reflex on both arms was "diminished". He checked them today and now not only are my bicep reflexes "diminished" but my knee reflexes are as well. He looked at me concerned and asked me what had changed this month from last month. I told him that my arms died on my April 28th. I couldn't use them, my wrists or my hands for about an hour and 20 minutes. I told him that last week my tongue felt "heavy" and then it happened again on Monday. I also informed him that the muscle weakness is beginning earlier in the day and it's getting worse.

He told me to take the Mestinon and that he's going to schedule me for an MRI. If the Mestinon doesn't work then I don't have MG. If the MRI comes back fine then he's sending me to get a muscle biopsy. So, right now I still don't know what's wrong. I'm picking up the pills tomorrow afternoon. They had to order some cause there wasn't any in stock. I'll start taking it Saturday because I have to take the pill 3 times a day.

I'm exhausted. I don't have any energy to do anything. Everything's too heavy. The parts of me that are affected are my jaw, tongue, voice, throat, neck, legs, arms and shortness of breath. Sorry this is so long.
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Old 06-01-2012, 09:29 AM #2
Brennan068 Brennan068 is offline
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Hi Anna,

Welcome to our little corner of the Internet. There are lots of MGers who are diagnosed based on symptoms alone. Researchers are still finding new anti-bodies that cause the condition and there are no new tests yet. For such a little thing, the neuro-muscular juncture is pretty darn complicated

What doseage did your neuro set your mestinon at? I'd take the first dose as soon as you get the pills from the pharmacy if I were you. If it is MG you'll be quite amazed in about 20-30 minutes from the first pill. Mestinon doesn't build up to its effectiveness. The three times per day thing is because it wears off in your body so quickly.

I hope you find your answers and a treatment for what you're going through.


Best,

Brian.
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AnnaMarie (06-01-2012)
Old 06-01-2012, 09:41 AM #3
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Welcome Anna!

Glad you found us...but sorry you needed to.

If the Mestinon helps, it can be dramatic. Pls. let us know how it goes on Saturday. My fingers are crossed!!
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Old 06-01-2012, 12:10 PM #4
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Welcome, AnnaMarie. I'm sorry you're going through so much.

The first thought that popped into my head was whether you've been tested for Lyme disease because of the migratory pain. Has your vitamin D been tested? That can cause pain too.

Did they put you on a drug for gastritis? Antacids can make anemia worse because iron absorption from food decreases. Are you on an iron supplement? Taking it with vitamin C will help with absorption. Don't take at the same time as calcium/vitamin D.

Have they tested you for pernicious anemia?

Your doctor probably did the very basic PFT. What you need to assess your breathing is FULL PFT's, including MIP and MEP which are specific for neuromuscular diseases like MG. Perhaps you could make an appointment with a pulmonologist.

Did your doctor specify how much Mestinon to begin with? A lower dose like 15 mg. or 30 mg. is often recommended. He should've been more specific. Did he talk about any side effects? Take it with food to help with any possible gastric side effects. If you don't have MG, it may make you feel weaker, so it might be a good idea to have someone with you when you start taking it. It kicks in after about 30 minutes and wears off in about 3 hours after taking it, though it's often sooner.

Your symptoms do sound like MG. If you get weak to the point of not being able to move well, breathe well or swallow, it's time to dial 911. Even if you're not diagnosed, the best place for you is in the ER. DO NOT try to drive yourself in!!! EMT's can help facilitate care and get you to a doctor more quickly, which is what you need if you are weaker from MG.

You don't have to have ptosis to have MG. Have you taken pics of your face when you are doing better and when you're worse? You could have it and not know it. A neuro-ophthalmologist can assess that well and if you have double vision.

Write up a medical alert card for you purse that has your name, insurance info, doctor names and numbers, conditions, drugs, emergency contact, etc. Make sure you put down that your neuro thinks you have MG.

If you do have MG, you need to take it easy. Heat will make MG much worse. I hope you will get the answers and the care you need soon. Let us know how it goes with the Mestinon! Take care.

Annie
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Old 06-01-2012, 01:29 PM #5
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Default Took first dosage

Thanks for the welcome everyone.

Brennan068 - My Neuro has me on 60 mg tablets. For today, I take half (30mg) 3 X's day. Tomorrow I take 60 mg 3 X's day and then Sunday I take 90 mg 3 X's day and stay on that dosage.

I did take 1/2 a pill today at 1:10 pm and I feel a little better. My neck is still weak but not as bad. My legs and arms are about the same. I did make it through dinner without any jaw weakness. It got weak right at the last bite of food so that's a major improvement.
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Old 06-01-2012, 03:56 PM #6
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Quote:
Originally Posted by AnnaMarie View Post
Thanks for the welcome everyone.

Brennan068 - My Neuro has me on 60 mg tablets. For today, I take half (30mg) 3 X's day. Tomorrow I take 60 mg 3 X's day and then Sunday I take 90 mg 3 X's day and stay on that dosage.

I did take 1/2 a pill today at 1:10 pm and I feel a little better. My neck is still weak but not as bad. My legs and arms are about the same. I did make it through dinner without any jaw weakness. It got weak right at the last bite of food so that's a major improvement.
Ummm... well, go with your neuro's advice/schedule but that's a really fast ramp up. Typically you'd go with something (like 30 or 60) x 3 for a couple of weeks and see how you tolerate it / how well it is controlling the condition. I was on 60 X 3 for a long time before my neuro bumped me to 90 X 4 (long time as in a couple years and I was noticing symptoms starting to creep back.)

You need to watch for gastro-intestinal issues - these are usually the first signs of too much. If you start to experience any let your neuro know right away.
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Old 06-01-2012, 06:02 PM #7
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I see what you're saying. I'm going to follow his schedule but keep an extremely close eye on my symptoms and how well I'm tolerating the medication.
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Old 06-01-2012, 07:06 PM #8
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I took my 2nd dose of Mestinon 30 mg a little after 7 pm and I must say I feel like crap right now. I don't know if earlier was a fluke or I'm just having a bad run right now but my neck, arms and throat are weaker than before I took it and honestly I've been sitting in front of my computer for about 20 minutes just staring into space, like I'm in a fog. I'm not sure what that means but I'm not feeling too good right now. I'm not sure if I should take it tomorrow or not - maybe take it and see if I feel the same or any different. I need to lay down.
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Old 06-01-2012, 01:35 PM #9
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AnnieB3 - I have been tested for Lyme Disease (2011) and Vitamin D has been checked as well. Both are normal. I don't have migratory joint pain anymore. That stopped in mid-2011. I think the way I wrote it up was a little confusing and I apologize for that. I just have muscle weakness now and only minor muscle aches off and on.

I'm on Zantac for Gastritis. I went through my Colonoscopy/Endoscopy results and I also have a hiatal hernia. I'm not sure how I missed that. I'm see my doc in a few weeks. I'm going to talk with him about it and see if that could be causing the anemia. I do take Iron and Vitamin C for the anemia. I don't know if I've ever been tested for pernicious anemia.

The Neuro did talk about the side effects of Mestinon and informed me that I needed to take with food. As for the eyes, I've been checking myself in the mirror when I get really weak and haven't noticed any changes at all. I live with my sister and she's with me a lot of the time and hasn't noticed any changes with my eyes either. I will continue to keep tabs on it though in case that changes.

I learned the hard way about heat. Thought I was going to die a couple of times. I think because this started last November, it was cooler, so I was unaware of the temperature affecting it but when spring rolled around that changed.

As for the PFT, I believe it was basic but I'll have to look through my medical records to make sure.
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