Damage From no treatment

StephC · 09-24-2012, 07:37 AM

Alice

Thanks for the (as always) thoughtful response. I realized although I like my neuro, truth is only thing he actually told me was he said I think you have MG beyond that anything I know about it is what I read which is quite amazing to me.

Also another thing I noted about neuro in general is they do tests, exams that suggest to me that unless I am literally incapacitated at time of the exam, ar sort of useless...ie..sure I can walk, touch my nose and puff my cheeks but that doesn't mean I am ok. Perhaps something that actually compares your performance to your own baseline would be more helpful?

Steph

Stellatum · 09-24-2012, 08:02 AM

My neurologist tests me (for example) by having me push on his arm, and my strength always seems normal. But the neurologist who finally diagnosed me (I had to travel) used the same tests, but he kept me pushing much longer. At that point in my illness, I wasn't noticing weakness in my arms, so I was surprised when the muscles gave out--in a way I had never experienced before. Now that's a neurologist who knows what he's doing! He said, "Hmm. That's pretty good. It's not normal, but it's pretty good." I was so glad to hear those words, because it was the first time a doctor had anything to go on besides my description of symptoms.

Abby

Anacrusis · 09-24-2012, 08:48 AM

Quote:

Originally Posted by StephC

Anacrusis

I hope that means you are feeling better!
Steph

Well certainly today I feel extremely normal! I hope this lasts and am not getting overexcited about nothing! Hard to believe a few weeks ago I was choking on my spit during SFEMG – But surely cold temperatures can not possibly give such dramatic improvements? It´s as if suddenly no´damage´ is present even after all these years. I doubt that I will ever return to my original pre-myasthenia activity level but if I can find an electric cooling jacket, take Mestinon when needed and stay away from antibiotics then I think I´m good! (I do know you can´t do that with other medications)

Hope you get the minimum spreading of MG and maximum effects from your medications, Steph

By the way - I landed probably the one neuro on the planet who didn´t test me for fatigable weakness.....and I wondered why a neuro wouldn´t ask which were your weakest muscles

when that is the whole point of your visit.

teresakoch · 09-24-2012, 09:11 AM

The fact of the matter is that only around 600 people in the US are diagnosed with MG per year - it's not a common disease by any stretch of the imagination. The best neuros out there are the ones who are willing to LEARN about the disease and listen to their patients.

If you are lucky enough to live in/near a larger population center, chances are that at least one neuro in the area has had experience with more than one MG patient.

And yes, it is hard for a doctor to know what our day-to-day lives are like when they only see us for 1 hour (or less) every 3-6 months. If we "appear" fine at the office visit, they will naturally assume that we are like that all the time.

Some people have found that - as hard as it is on their body - it is sometimes best to not take their medication before their office visit. Some of them find that an appointment later in the day (when muscles are weaker) "helps" as well. Keeping a daily journal can help, too - it gives their doctor better insight into what's going on day-to-day.

Most doctors want to help us as much as possible, but they can only work with the information they are given/what they see. They're only human, and they don't have the time to do the in-depth research that we can do - they have more patients than just us, and most of them have families who want to spend time with them after their work day is done.

A good doctor is one who is willing to work WITH their patients, and who understands that we have access to information that might be helpful to our individual situation.

Anacrusis · 09-24-2012, 09:44 AM

Quote:

Originally Posted by teresakoch

A good doctor is one who is willing to work WITH their patients, and who understands that we have access to information that might be helpful to our individual situation.

Totally and utterly agree with that. I now have a doctor who sees me and treats me as one of the ´5%´ SFEMG negatives in MG which is quite amazing. This was effortless on his part and made me realize that a relationship with a doctor doesn´t have to be a laborious arduous task.

It wasn´t difficult to respect but SO MUCH hard work trying to work with the wrong doctor over 2 years when you already have debilitating symptoms. I personally am a much´harder´ patient now than what I was. Just like running a business - at the same time as still respecting all of my present doctors I expect no nonsense both in and outside of the doctor´s office.

alice md · 09-25-2012, 02:45 AM

Quote:

The fact of the matter is that only around 600 people in the US are diagnosed with MG per year

I may be wrong, but I do not think MG is that rare. Also, neurologists see all MG patients, not only the newly diagnosed ones. So, in a chronic illness the exposure of physicians is determined by the prevalence (the number of patients in total) more than the incidence (the number of newly diagnosed).

There are about 25,000 MG patients in the US.

According to Google, there are 13,5000 practicing neurologists in the US.

So, on average every neurologists sees 2 MG patients over his/her life-time.
This number is of course much higher for neuromuscular specialists.
In fact, most leading MG experts see a few hundred patients.
So, not having enough exposure to patients is not the reason for lack of understanding and knowledge, nor does it explain why there is such limited research.

Quote:

They're only human, and they don't have the time to do the in-depth research that we can do

I am sorry, but I do not agree with that. Part of a physician's job is to have a good and deep knowledge and keep updated with the research in his/her field of practice. Physicians should also try and find answers and better ways to manage their patient's illness by doing well conducted research.

I think most neurologists do know the medical literature on MG, with reasonable depth. It's just that there isn't much to know. The way MG was diagnosed and treated 20 years ago is very similar to the way it is diagnosed and treated now.

Quote:

And yes, it is hard for a doctor to know what our day-to-day lives are like when they only see us for 1 hour (or less) every 3-6 months. If we "appear" fine at the office visit, they will naturally assume that we are like that all the time.

I agree with that. I think it is very hard to think that someone who looks so well in the office can be so ill at other times. They know this illness can be confusing and fluctuating but they find it hard to imagine how much. (even we, who live with it 24/7 find it hard to comprehend, so can't blame them for that).

Quote:

Most doctors want to help us as much as possible...A good doctor is one who is willing to work WITH their patients, and who understands that we have access to information that might be helpful to our individual situation.

I fully agree with that. I think it is even more true in this "crazy" illness and not every physician has the personality which is required for that. So, even if they have the best intentions they end up stepping on our toes during this complex dance.

FREDH · 09-25-2012, 05:55 PM

I am not very experienced with this, but I went apprx 4 years un treated , because of no diagxx and mine did not get worse. I stayed about the same, hard to chew, hard to speak sometimes, and droopy eyelids. Mestinon has completly taken that away, but I wasn't getting worse before.
Thanks all

FredH

PhotoBug50 · 09-27-2012, 12:23 PM

Quote:

Originally Posted by pingpongman

See I believe Neuros send us for second opinions because they do not have the expertise to deal with difficult cases. That being said I appreciate my Neuro doing that. That's just one reason I like him. Most of them have ego's that will not allow that. I have already been for one second opinion and he was the one who found out I was positive for 4 antibodies but did not offer any plan of attack.

Prednisone almost ruined me. I was on 60mg and the muscles in my legs got so weak I almost needed a wheelchair. The second opinion doctor (neuro-muscular) said I was one of those people that can't take Prednisone and started tapering me that day.
Mike

Which brings to mind a question I have had in my mind for some time. As a practical matter how long can a person stay on 60-80 mg's of Prednisone without causing serious damage to the body...muscular, skeletal, organs, etc. Of course it will vary depending on the initial state of health when the Pred is started...but on average I wonder. I have been on 80 a day for one month and am now beginning to drop to 60 every other day. Presumably this is the beginning of a long taper during which my Neuro will look for signs of success or failure in getting those hooligan antibodies to stop destroying and/or blocking my ACh receptors. But I have to wonder how long I can keep taking this sledgehammer drug, it's already taking a toll. Just now reaching the "puffy face" stage...and weak? Oh yeah. Oops and one more question. At a sustained 60 or 80 mg level of Pred, just how much of a person's immune system has really been put out of business? It can't be a total shutdown, or we'd all die of a common cold. Any thoughts?

PhotoBug50 · 09-27-2012, 12:53 PM

Quote:

Originally Posted by teresakoch

Mestinon - an acetylcholinesterase inhibitor - does nothing to improve or slow the progress of MG. It simply allows our muscles to take up more acetylcholine than they are able to (due to the atrophy of ACh receptors on our muscles).

I think Alice described it best in another post - our bodies release a constant level of acetylcholine, and our muscles take up what they need. Acetylcholinesterase comes along behind and "mops up" any ACh that hasn't been taken up. This is necessary because a human's muscles cannot handle too much ACh.

For people with MG, the fact that our receptors are damaged means that we aren't able to take up an amount of ACh which will allow our muscles to work well. The AChE mops up the excess, regardless of if we have enough in our muscles or not. It isn't a "variable" process, it is a constant, level process.

Mestinon allows us to "cheat" that process by slowing the rate at which the AChE is released by our body.

So in that regard, Mestinon is not a "cure"; rather, it is a "booster". It works differently in every person who takes it (however, a person who doesn't have MG will not be able to tolerate it because there is nothing wrong with their ACh/AChE process in the first place).

It is the immunosuppressants which seem to help us more, as they stop the PROGRESS of the damage which is being done to our receptors.

Most Drs. will start their MG patients off on the lowest possible dosage of an immunosuppressant precisely because of the side effects. For most patients, those side effects that are so common with medications like Prednisone tend to not show up until a patient is taking more than 20 mg/day.

I've been on 10 mg/day for over a year and haven't noticed any adverse side effects; however, for a couple of weeks when I had to be hospitalized, my doctor put me on 60 mg/day, and it was horrid. I was eating anything that wasn't nailed down, and I was "hell on wheels", as my family put it.

Of the two, the immunosuppressant appears to be the one that is more important in terms of "helping" MG patients (and it doesn't work for everyone), because it slows the progression of the disease. Mestinon doesn't have to be taken, but it will generally allow us to function day-to-day more efficiently than we could without it.

Obviously, you are not required to take ANY medications if you don't want to - you just need to be aware of the REASONS that your doctor is suggesting these medications.

Very articulate and accurate explanation. Thank you. I'm familiar with the hell on wheels thing at 80mg, which was my starting dose 30 days ago. Some start high and then go down, others the opposite. I think my Neuro looked at my exacerbated symptoms and anti-body count and decided that my MG needed to be to hit hard right out of the starting gate. The Pred tends to make me more hostile and sensitive, then the 60-4x Mestinon wires me up tighter still. I have to admit that there are times when I'm not fun to be around. Or could it be the Peet's coffee that I'm addicted to? No wonder my pupils are constricted, along with some other things. -Mark

southblues · 09-27-2012, 07:03 PM

80 mg of prednisone a day will most definitely cause some issues. It would kill me due to high blood pressure. How long it takes will probably depend on you.

I don't know that much about humans, but I had a 100 pound dog that took 40 mg of prednisone every other day for 7 years. He died eventually, but he was 14 old which is about as long as any 100 dog is going to live.

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