Muscle Biopsy tomorrow - eeeeEEeeeee

mvoyvodich · 11-03-2010, 04:44 PM

I'm healing well and on the mend.

Quote:

Originally Posted by mvoyvodich

Thanks for the positive vibes. It went great.

MomYaYa · 11-03-2010, 11:21 PM

How long until you get the results? I had a muscle biopsy in my deltoid. At that time they said they were considering both MG or Mitochondrial Myopathy. They did it in March I think. I don't remember much (I suffer terrible memory problems.. anyone else??) but I do remember that it took me about 4 days to recover from the anesthesia. I have terrible reactions to it and it just really knocks me flat. I hate anesthesia. I remember my arm hurting, but honestly can't remember it lasting. My family would tell you different probably. lol

Ultimately mine was no use since it gave us no answers.

Annie59 · 11-04-2010, 10:27 AM

I related to so much you said in path tho I am not sure if there was a point that it started like your virus. What surprised me was that you do have breathing problems and obviuosly severe MG problems yet you are able to still work. It does sound like the mestion does work well for you. Is this what you feel is what gets you thru work? Does the mestinon help your body all over in a consistant way? I had problems with it affecting different part of my body more or less. An example is that I couldnt return to my job because when I had the first crisis it hit my breathing. Yet at 60mg 3-4 times a day it didnt help it enough to talk all day as I would need to at work on the phones. I they let me try 75mg doses but the 2nd or 3rd day my speech went very strange. It was kinda slurred and I had to work so hard to form words. They made me go back to 60mg which ended my partime job.

How do you think you balance your meds, work, symptoms?

Annie59

Quote:

Originally Posted by mvoyvodich

Hi Rachel,

Yes I had the SFEMG and it was also negative. Yes, I was diagnosed with symptoms and treated with Mestinon alone. My symptoms started with having a hard time walking up the stairs and progress drastically over the next couple of months after I got a cold/virus to being very weak in my face muscles (droopy eyes, couldn't really make facial expressions, etc), jaw, neck, back, arms and leg muscles. I gained a horse voice and had issues breathing (shortness of breath). No pain. I just got weaker everyday until they started me on the Mestinon. It was pretty scary at the time bcuz I wasn't strong enough to drive, brush my teeth, put on my clothes or cook for myself. I lived alone at the time, so my mom was visiting often to help out. Now I can do all of those things, but still get exhausted/fatigued. If I don't rest immediately then the fatigue quickly turns into weakness. I'd say I'm about 85% of who I used to be in terms of energy when I'm having a good day, which might not be too bad since I used to be pretty hyper...LOL. However a good day consists of not working and doing minimal stretching to use my muscles. As soon as I work out, even lightly, I knock out for the rest of the day. I get weak and sleep. I can do a total of 12 minutes on the sit down bicycle, going fairly slow; but, when I'm done, like I said, I'm shot. Working is a real challenge too. I am beat after 8 hrs and pretty much go home to bed to rest for the remainder of the evening in preparation for the next day.

Oh and one more thing, then and now, I cannot take heat (sun heat, heater, or super hot water). My body gets overheated very easily and then it makes me super weak.

craftyRCC · 11-04-2010, 10:38 AM

"M"

It's funny how so many of us share the same problems, yet it's so different for us just the same!

I'm very fortunate, If the weather and muscles are cooperating I can manage a 1.5 to 2 mile walk daily, I have an awful time getting up stairs regardless of the distance or amount of activity...and needing to rest afterwards is a given for all of us!!

I've found that extreme heat and humidity and sometimes even the colder temperatures make the weakness worse as well.

Right now the work thing isn't a problem for me, I took early retirement several years ago to care for my chronically ill mother, I was able to stay home after she passed away. I may have to return to work, not sure how I'm going to swing that. I used to work as a jail nurse, and easily worked 50 or more hours a week. Now I'm lucky if I can pour my own cup of coffee in the morning! Will see what happens when I'm on a full dose of Mestinon. My neuro has started me on a low dose until I see him again in a few weeks. It helps some but I know it will need to be increased.

Thanks again for sharing, good luck with the biopsy!

Rachel

roguepuppet · 11-19-2010, 10:34 PM

actually, my recent research shows that 50% of SCS patients get some relief with mestinon, but that it does not last. How long have you been on the mestinon? Has there been any change in your response to dose?

I have recently put the question of a CMS to my neuro, as there is some evidence for other cases in my family, which is unusual for MG. Waiting for his response

pingpongman · 11-20-2010, 09:53 AM

Roguepuppet I have a family history of MG. We believe my Grandfather had it. We know for sure my Mom and 2 of her sisters had it. Now I have it and my baby sister has it. So when they say you can't inherit it I just chuckle.
Mike

Quote:

Originally Posted by roguepuppet

actually, my recent research shows that 50% of SCS patients get some relief with mestinon, but that it does not last. How long have you been on the mestinon? Has there been any change in your response to dose?

I have recently put the question of a CMS to my neuro, as there is some evidence for other cases in my family, which is unusual for MG. Waiting for his response

AnnieB3 · 11-20-2010, 11:59 AM

Roguepuppet, Would you please share that research that shows slow channel syndromes respond to Mestinon?

Annie

roguepuppet · 11-21-2010, 01:08 PM

pingpongman interesting family history, thanks for sharing. are you guys seronegative or positive?

pingpongman · 11-21-2010, 01:25 PM

I'm not sure what you are talking about. We are both pretty new at this. One has positive binding and the other modulating antibodies. She is going to Univ of North Carolina in Jan to finally see someone that knows what they are doing.
Mike

Quote:

Originally Posted by roguepuppet

pingpongman interesting family history, thanks for sharing. are you guys seronegative or positive?

AnnieB3 · 11-21-2010, 04:19 PM

Okay, Roguepuppet, I will answer my own question. Cholinesterase Inhibitors may create a short term response for the Slow Channel Syndromes but they don't in the long term, not unlike the responses those with ALS have. Due to the very nature of the Slow Channel Syndrome - the channel being open too long and too much acetylcholine getting to the muscle - it is not as effective as Quinidine Sulfate. And Fluoxetine, a drug that can have serious side effects, does an even better job.

I put this information here in case someone may want to read about these congenital myasthenic syndromes.

http://neuromuscular.wustl.edu/synmg.html

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