Still Unhappy Camper, but Better

jdr999 wrote:

Madalot wrote:One thing I wanted to respond to and forgot is the opinion that arriving in the ER by ambulance guarantees immediate attention. At least where I live, that isn't true.

Oh, maybe I wasn't clear enough. All hospitals will have very detailed triage procedure which they are required to follow.

Yes, this makes sense. And in thinking about it, those sitting on gurneys had been seen (briefly) by hospital staff in conjunction with the paramedics.

When my gallbladder decided to try to kill me, I did have my husband drive me to the ER. I had back and chest pain and was having difficulty breathing. It was 4:30 in the morning and there was NOBODY in the waiting room and the ER was seemingly pretty calm & quiet. I know they had patients in the rooms, but it wasn't chaotic like ER's usually are.

I signed in, waited at least 10 minutes to be triaged, then another 10-15 minutes before I was taken back. I wasn't alone so at least if I collapsed, HE could get them to move a little more quickly.

BlackSpinner wrote:{{{Hugs}}} (carefully) Maddy.

I didn't post before because I have no experience there and since my sister has something similar and un defined (but no where near as bad) I knew what little knowledge I had was probably invalid. And yes she is as stubborn about subjecting herself to medical attention as you.

Take care of yourself and remember we all care and want to see you not suffering. It is hard, sitting in front of a screen and unable to reach out except with words, to people we care about, who are in pain.

Thanks, BlackSpinner! I appreciate that.

I'm still hurting and feeling yucky. I'm staying aware of the pain, what affects it and if it gets worse. Until it STOPS, I don't consider myself totally out of the woods.

I'm debating about having my boys set me up on a sofa, where I can lay on my right side and watch television should I desire. My cleaning people are coming at Noon so I would have to do that after that time. I know that I feel better if I do NOTHING.

Madalot wrote:One of the things that is so hard for many people to understand is how having a neuromuscular disease affects even the smallest activity. .

Pain tolerance is a very personal thing. For some who are not used to pain, when something hurts - IT HURTS, A LOT! A 10 is the worst pain you have ever felt, but it's all relative. There are others who may be more accustomed to living with pain and discomfort. When these people who have toughed it out for so long finally complain it may be difficult for healthcare personnel to understand exactly how much discomfort it took to bring them here. Sometimes I think those who complain the least are the hardest to treat.

Hell, I waited until my body completely shut down and I could barely walk or stand. It appears that xPAP hasn't fixed all my troubles so I just gave 25 vials of blood to a Lymes specialist and another 25 to a rheumatologist. Somebody's got to find something.

Sometimes I wish I complained a lot more!

jdr999 wrote:Hell, I waited until my body completely shut down and I could barely walk or stand. It appears that xPAP hasn't fixed all my troubles so I just gave 25 vials of blood to a Lymes specialist and another 25 to a rheumatologist. Somebody's got to find something.

Sometimes I wish I complained a lot more!

Dang. I'm sorry you are feeling badly and they don't know why. It's incredibly frustrating, I know. I hope all that blood you gave will give them an answer.

You're right about pain being a bit relative. My husband can tolerate pain beyond anything I could imagine. My daughter, on the other hand, complains so much that everyone ignores her cries for sympathy. Which, could be bad for her *if* something was really wrong. But you can't tell her anything so we don't bother.

I am in some kind of pain 24/7. My muscles ache from my regular movements and I have prescriptions for pain meds that I take on a set schedule to keep it at a tolerable level. What I am experiencing right now I would give a 5-6 but I can get by without complaining or bellyaching about it. Just sitting in my desk chair, I can feel my back muscles tightening and sometimes going into spasm. They HURT. By evening, though, the pain increases to the point that I am in tears, so I guess I'd say about 8 or 9 at that point. This is way above and beyond my "normal" pain that I have all the time.

I have my yearly neurology appointment on Friday and I am NOT looking forward to the strength testing they have to do. All that pushing and probing is going to irritate my already pissed off back muscles. I plan on warning them beforehand and maybe they'll take it easy on me!

Madalot wrote: I have my yearly neurology appointment on Friday and I am NOT looking forward to the strength testing they have to do. All that pushing and probing is going to irritate my already pissed off back muscles. I plan on warning them beforehand and maybe they'll take it easy on me!

Hi Maddie,
I wonder if it might be better to delay your neurology appt. Not because of the discomfort, but because the strength testing might not be accurate because of it. But then the appt was probably made months ago and a delay might not be possible...If it's anything like where I go. Just a thought..
J

jamiswolf wrote:

Madalot wrote: I have my yearly neurology appointment on Friday and I am NOT looking forward to the strength testing they have to do. All that pushing and probing is going to irritate my already pissed off back muscles. I plan on warning them beforehand and maybe they'll take it easy on me!

Hi Maddie,
I wonder if it might be better to delay your neurology appt. Not because of the discomfort, but because the strength testing might not be accurate because of it. But then the appt was probably made months ago and a delay might not be possible...If it's anything like where I go. Just a thought..
J

Just to add more issues to this - there was a death in my husband's family and the funeral is Friday. Unfortunately, I cannot take myself to the appointment and if I cancel, it's 6-8 months before I can get another appointment.

We're planning to keep the appointment, but they already know about my back issues since I called to ask about taking muscle relaxants. I thought about the strength testing being skewed as well, but as long as they know about it, I think I need to still go if I can take the pain on the ride -- 1.5 hours, plus I have a second appointment down there later in the day with my Occupational Therapist.

I'm probably going to be miserable by the time we get home.

Madalot wrote: Just to add more issues to this - there was a death in my husband's family and the funeral is Friday. Unfortunately, I cannot take myself to the appointment and if I cancel, it's 6-8 months before I can get another appointment.

Maddie,
I figured the practicality of a re-schedule was probably unrealistic. But if your strength testing is a bit low, they'll know why.

And a loss in a family is hard too. My 85 year old Mom died suddenly last week. Wasn't able to say goodbye...but last night I dreamed I saw her and was able to send her on her way with a hug.
Take care,
J

jamiswolf wrote:

Madalot wrote: Just to add more issues to this - there was a death in my husband's family and the funeral is Friday. Unfortunately, I cannot take myself to the appointment and if I cancel, it's 6-8 months before I can get another appointment.

Maddie,
I figured the practicality of a re-schedule was probably unrealistic. But if your strength testing is a bit low, they'll know why.

And a loss in a family is hard too. My 85 year old Mom died suddenly last week. Wasn't able to say goodbye...but last night I dreamed I saw her and was able to send her on her way with a hug.
Take care,
J

I'm sorry for your loss, Jamis. For my husband, it wasn't a really close relative, but family nonetheless. I offered to cancel my appointment so he could go, but he thinks taking me to my appointment is more important.

My PCP thinks the Neurologists (I see more than one when I go) should see what is happening with my back muscles. The fact that this is day 10 (will be day 12 Friday) of this is something they will want to document for themselves.

Thanks Maddie...My Mom (Lucy) had been struggling with leukemia so it wasn't a big surprise...except for the suddenness.

Since I was away from the Forum for quite awhile, I haven't kept up. I was curious if the Myasthenia gravis diagnosis was ever confirmed and are you still taking Mestinon?
Jamis

jamiswolf wrote:Since I was away from the Forum for quite awhile, I haven't kept up. I was curious if the Myasthenia gravis diagnosis was ever confirmed and are you still taking Mestinon?
Jamis

My current neurologists are theorizing Mitochondrial Myopathy with a Myasthenic syndrome. The tests they have done so far have been inconclusive, neither confirming or ruling out anything.

I stopped the mestinon because it didn't seem to help. No need taking medications that don't do anything.

We still have not heard anything, as far as I know, from the research study at Children's where they are testing for every known Muscular Dystrophy. We sent them my blood in June of 2011, but I've been told that I just have to be patient, then they remind me that I'm getting close to $100,000 worth of testing done for free for research. So, I've quit asking and figure they'll tell me when they get something - if they get something. They always bring it up at my yearly checkup, basically saying "we still haven't heard" --

I'm still officially Muscular Dystrophy of unknown origin/etiology.

Madalot wrote: We still have not heard anything, as far as I know, from the research study at Children's where they are testing for every known Muscular

My Dad had Myasthenia, as you may or may not recall. I was just curious if that had been ruled out. He had weakness but no muscle irritability.

Wont that be interesting when those results come in. One would hope that it might guide the Doctors who are treating you as well.
Rest well,
Jamis

jamiswolf wrote:

Madalot wrote: We still have not heard anything, as far as I know, from the research study at Children's where they are testing for every known Muscular

My Dad had Myasthenia, as you may or may not recall. I was just curious if that had been ruled out. He had weakness but no muscle irritability.

Wont that be interesting when those results come in. One would hope that it might guide the Doctors who are treating you as well.

I remember your saying that. My father had it as well, but every test for myasthenia they've run on me has come back negative.

Before the Muscular Dystrophy, I was diagnosed with Fibromyalgia since my muscles have always been very sensitive. I remember YEARS ago going with my sister (who was diagnosed with Fibro way before me) to a research study. I was allegedly the "normal" person. They did something called "skin rolling" -- O.M.G. -- I thought I was going to DIE. That was supposedly a test that would make a fibro patient go crazy in pain and a normal person wouldn't mind it. My sister said it didn't bother her a bit, but I was so sore for at least a week after.

My current doctors are saying that whatever is going on, including the muscle pain, is from whatever neuromuscular disease is plaguing me. It would be nice to know what disease it is before I die. I'd like that.

And I'm off the computer for the day now. My back is killing me and I don't want to take a muscle relaxant until I go to bed. I'd like to stay awake at least until then and I can't do that with one of those in my system. Plus, my cart with the ventilator is sitting off in the living (cleaning people came today and we put it there out of the way). If I sleep now, I'd HAVE to sleep without it until I can get somebody to move the cart (and nobody's home but me).

So, I will find a place to sit and maybe read. But dang it's started to hurt again.

Madalot wrote:

jamiswolf wrote:

Madalot wrote: We still have not heard anything, as far as I know, from the research study at Children's where they are testing for every known Muscular

My Dad had Myasthenia, as you may or may not recall. I was just curious if that had been ruled out. He had weakness but no muscle irritability.

Wont that be interesting when those results come in. One would hope that it might guide the Doctors who are treating you as well.

I remember your saying that. My father had it as well, but every test for myasthenia they've run on me has come back negative.

Before the Muscular Dystrophy, I was diagnosed with Fibromyalgia since my muscles have always been very sensitive. I remember YEARS ago going with my sister (who was diagnosed with Fibro way before me) to a research study. I was allegedly the "normal" person. They did something called "skin rolling" -- O.M.G. -- I thought I was going to DIE. That was supposedly a test that would make a fibro patient go crazy in pain and a normal person wouldn't mind it. My sister said it didn't bother her a bit, but I was so sore for at least a week after.

My current doctors are saying that whatever is going on, including the muscle pain, is from whatever neuromuscular disease is plaguing me. It would be nice to know what disease it is before I die. I'd like that.

And I'm off the computer for the day now. My back is killing me and I don't want to take a muscle relaxant until I go to bed. I'd like to stay awake at least until then and I can't do that with one of those in my system. Plus, my cart with the ventilator is sitting off in the living (cleaning people came today and we put it there out of the way). If I sleep now, I'd HAVE to sleep without it until I can get somebody to move the cart (and nobody's home but me).

So, I will find a place to sit and maybe read. But dang it's started to hurt again.

I feel so bad for you. I also have myasthenia gravis. I was actually relieved to finally have a diagnosis, rather than crazy symptoms that were written off to age, anxiety...... All those diseases under the MDA umbrella can be so difficult to diagnose. You are in my thoughts.

Mgsnorer wrote:I feel so bad for you. I also have myasthenia gravis. I was actually relieved to finally have a diagnosis, rather than crazy symptoms that were written off to age, anxiety...... All those diseases under the MDA umbrella can be so difficult to diagnose. You are in my thoughts.

That's sweet of you. I'm sorry you're dealing with MG, but you are right in the aspect of at least knowing what's wrong with you. While it's still a difficult diagnosis, at least you know. I've been dealing with this since 2000, but I've known since I was very young that something wasn't right.

My back, side & chest still hurt. The muscle relaxant is good for one thing and one thing only -- putting me to sleep. It's good that it lets me sleep, but bad because I really can't take it other than bedtime, which leaves the rest of the day to cope with this. I'm already debating about NOT taking it tonight since we have to leave the house at 5:45 which means I'll have to get myself up between 4 and 4:30 to get ready to go. The "hangover" effect is too strong to risk NOT getting up tomorrow.

Ugh -- I wish this would just stop already.

Good morning Maddie,
Hope you slept well. I had a thought regarding your pain and wanted to mention it. Sometimes with muscle pain/strain, there is a 'trigger point" where the pain originates and then spreads to other adjacent muscles. And if you calm the trigger point, the whole area calms. Calming a trigger point is usually done with a local anesthetic/cortisone injection. Did your Doc mention such a possibility? If you have to return, ask about that or maybe even ask your Neurologist on Friday. The resolution can be very dramatic which I'm sure you would appreciate.
In the meantime...
Take care,
Jamis

jamiswolf wrote:Good morning Maddie,
Hope you slept well. I had a thought regarding your pain and wanted to mention it. Sometimes with muscle pain/strain, there is a 'trigger point" where the pain originates and then spreads to other adjacent muscles. And if you calm the trigger point, the whole area calms. Calming a trigger point is usually done with a local anesthetic/cortisone injection. Did your Doc mention such a possibility? If you have to return, ask about that or maybe even ask your Neurologist on Friday. The resolution can be very dramatic which I'm sure you would appreciate.
In the meantime...
Take care,
Jamis

Thanks, Jamis. I'll keep this in mind. I'm reasonably sure that both my PCP & Neurologists would require that I see a pain management specialist. But I'll know more after I see all the Neurologists tomorrow.