[hankster1]

Hi Neurotalk. I hope everyone is doing well. I am in the process of a new workup for a Neuropathy. My new Neurologist said I show some symptoms of a Multifocal Neuropathy but that I don't fit in that category. I am being testeed for Myasthenia Gravis.

My question is regarding my breathing difficulties. I had a Pulmonary workup done a few days ago and the results came back and showed that my lungs look normal but my lung volume is reduced, my lungs are not expanding as they should, and that my breathing is not a lung issue but a muscle problem.

Furthermore, over the past few days I have noticed that I cannot open my mouth as I previously was able to. I have had struggles chewing. It also feels as though food is getting stuck in the back of my throat (even though it may not be).

I spoke with my doctor and my Neurologist who said that once this becomes more than an annoyance and does interfere with my eating, go to the ER. That has not happened yet.

But I woke up this morning and I have a pain right below my chest... right below where my rib cage comes together. It hurts when I push on it. Does anyone know if this is related or what it could be? I don't notice it when I'm not pushing on it, but now that I've noticed it, I'm of course pushing on it all the time.

I also notice that I can't hold my smile for very long. I can smile like normal but it goes away after a couple of seconds.

If you can relate or if you know anything about this, will you let me know? It's a Saturday and I'm a bit hesitant to contact my doctors, as I seem to have a new symptom every day that I'm contacting them about, and I'd like to give them the day off on a Saturday.

Thanks so much.

[4-eyes]

Hi,

You sound very much like me when I am very symptomatic. Sounds like you are having an exacerbation. I was told (and be aware I was receiving treatment at this point) that if I had difficulty managing my saliva, it's time to head in to ER. In your case, I would follow the doctor's advice about eating becoming difficult and to go to ER. You can choke in just a flash--it happened to me twice and required a Heimlich.

As for the pain, it could possibly be muscle strain from the chest muscles trying to compensate for weakness, it could be soreness from the pulmo tests when you were giving maximum effort. It could also be an infection or inflammation, although I would say that's unlikely. In any case, with the pain and the increased weakness, I would say a day of rest is essential to see if things improve. Do not eat alone and make sure whomever is with you knows how to do a Heimlich. If you live alone, go online and learn how to give a Heimlich to yourself (anyone with swallow issues should learn this!)

You could also call your doctor's office an ask for an after hours call back. Tell him about the new stuff and then do what he says. If you do go in to ER, tell them you are in the process of being diagnosed with MG and give them your doctors' info. I've had very good luck every time I've gone to ER and the staff has been responsive and eager to learn.

Good luck. Keep us posted.

[southblues]

I have odd pains in my chest and upper abdominal muscles. I have been checked for everything that can cause it, and none of the tests showed anything. I think that it is something to do with my MG. I think that 4-eyes may have it right; the muscles hurt from straining to make up the slack from other muscles that didn't do their job.

[hankster1]

Hi 4-eyes and southblues. Thank you for your thoughts on this. I am definitely going through a flare up of some sorts and it's just something new every day. Whether it's my, not being able to move my forehead, my drop foot, weakness, tiredness, or what I described in my initial post. Unfortunately I have yet to receive treatment. I'm 9 months into this and my first flare up went away on its own. It does not appear that this second flare up will go away on its own though, as it continues to progress and worsen every day.

I have gone to the ER 4 times and have not received any help. Some days I want to give up and just beg for someone to finally take care of me and treat me already. I am in the process of a new workup from a new neurologist. She seems great and she seems as though she will help, but the waiting process is just awful. I had my blood work this past week (24 vials - I am 5'6 and weigh 118 - I think I'm losing a lot of muscle because I keep dropping weight though my appetite has improved) and I can't seem to recover my energy from the blood work. I have another MRI and another Spinal Tap as my most recent ones were done 6 months ago. My EMGs are all recent.

So I just have to wait until Feb 12th when I see the Neurologist again. If I can't get in with a Pulmonologist before then, I will have to push back my Neurologist appointment, because she wants the Pulmonologist's input on whether or not to do a Phrenic Nerve test. I've had the workup, but Pulmonologists are impossible to get in with in NYC.

I've learned that whether or not I call a doctor to tell them about a new symptom or whether or not I go to the ER, nothing progresses. I get no relief and I don't know how to speed things up. I feel that NYC probably does have some of the best doctors, but the trade off for that is the waiting and the struggle to get in for other appointments and getting seen.

I have found that I can post on here and you guys relate to me and respond so quickly. How do you know when to say I really need help? How do you know when you really actually do need help? How do you make them hear you when you're saying it's time, I don't know how much longer I can function on my own, it's no longer safe? What are your options? Where do you go? What do you do?

I just don't think waiting two more weeks for some treatment is right, I think I need treatment now. And I don't know if that's the wrong thing to be saying to my world class Neurologist.

[pingpongman]

It sounds to me you have maybe found the right Neuro. You have got to hang in there till your appt comes. Some things I avoid are any kind of stress, heat and physical activity. There are other triggers but those are mine. Get lots of sleep, I nap everyday.
Hang in there
Mike

[4-eyes]

Hankster,

Are you being tested for MS, too? The MRI and LP are typical MS tests. If so, look up "MS hug" and see if that describes your chest pain. The footdrop also sounds more like MS than MG to me.

You are in a tough place to be--Limbo Land. I hope your long wait is coming to an end soon!

[AnnieB3]

Hankster, I'm going to be a little rough on you but it comes with the upmost kindness.

You NEED to be in an ER and getting more care. Whether that is oxygen or something else, you NEED it. It doesn't matter if you have MG, MS or something else. YOU NEED HELP.

MG can be deadly. If it gets bad, as it seems like it is for you now, you can stop being able to move/walk/breathe/think well. Oxygen will not be getting to your tissues as well and you can have actual heart pain, and a heart attack, due to that. The heart and brain don't do well without enough oxygen!

I know firsthand what it is like to not get ER help. That is why - if you can afford an ambulance - you dial 911. Or ask someone you know to drive you right away if you can't afford that. The reason doing the 911 thing helps is that once you arrive at the ER, they "might" take you more seriously.

Since you now have proof that it's "muscle fatigue" causing your breathing to be bad, you can tell the ER doctor that. You can ask for an arterial blood gas to see what your carbon dioxide level is, which increases when oxygen decreases. Did you ever see the movie Apollo 13? They had an external force causing them to have an increase in carbon dioxide and you have an internal one.

And would it be MS since there's muscle fatigue? It depends upon what tests showed that. If it's MIP and MEP and your numbers kept declining, it's probably MG. Those little details are very important in the diagnostic process. I hope you'll get a copy of your breathing tests.

A good ER doctor will monitor your BP, have an oximeter on your finger the entire time, do a bedside spirometry (which isn't accurate but it's useful), monitor your heart with an ECG, do an ABG and probably some other basic blood tests. And a very good ER doctor will call your neuro or his office for help.

So if you can have someone be your advocate or if you can be your own while you can't breathe or move well then please do go to the ER. You do not sound well at all. Like 4-Eyes said, you sound like you are in an MG exacerbation and can be very close to an MG crisis. An MG crisis can happen very quickly. You can't "control" it at a certain point. It just happens. I'm not saying that to scare you but to make you realize the dangerous situation you are in.

Be nice yet firm with the ER doctor. You could even ask him if he wants you to stop breathing and die on his watch. Say it in a nice way, of course, and take a breathe between each word so he "gets" it. It's the MG patients who are "newbies" and who don't have enough treatment yet who often go into an MG crisis.

If you see a doctor with "pooh-pooh" stamped on his forehead, ask him if he'd like his very real medical concerns dismissed so easily. Ask him how he'd feel if he couldn't move or breathe well at all. Then watch as the doctor's eyes get really wide, he quietly panics and rapidly gets you help.

Please don't put your life at risk simply because of past experience. Be tenacious and get yourself the care you need and deserve!!!


Annie

[hankster1]

Hi pingpongman, 4-eyes, and AnnieB3. Thank you for your experienced, thought out, assuring and informative responses. I see that MS has come up in two different responses today. I have been told multiple times that I have been absolutely ruled out and it would be almost impossible for me to have MS.

What the Neurologist told me is that she believes I won't have MG. She said I have symptoms relating to Multifocal Motor Neuropathy, but I'm not a fit for it. She thinks I won't be a fit for anything. What she wants to figure out is if this is inflammatory based or autoimmune response based so she can treat me with either IVIg or Steroids. She told me treatment will come before a diagnosis. I'm 100 million percent happy with this, I just want treatment.

As I said, I have been to the ER 4 times and each time I have been sent home and I haven't died. Yes, my symptoms have gotten worse, but I feel as though each time I went too early. I feel like to not cry wolf, with this new Neurologist, I need to wait until the correct time so that they I am actually hospitalized instead of being sent home without any help. Also this Neurologist only treats outpatient, not inpatient. So I want to wait until tomorrow to talk to her to see if she will help me get in to the hospital so that I can see a Pulmonologist, get my LP and my MRI all inpatient.

I've been getting my blood ox tested fairly frequently and it can go down to 92 and after rest and no talking or walking it can go up to 97. My BP is always great. Just so you know, I'm normally a healthy 30 year old and I climbed a 15,000 foot mountain in October.

Even if I don't have MG, I wonder if I am on track for some sort of MG related crisis. It's starting to feel that way. Just due to the increasing frequency of my symptoms. This morning it's my eyelids, they are barely opening. And the daze that I am always in is so hard to blink out of. I'm also walking really hunched over. The hunched walking has started in the last week or so since I had the blood drawn.

Anyway, the Neuro will be getting a call first thing tomorrow morning. I live close to the hospital. I have great insurance so I can call 911 if I need to and I am not alone. I wanted to write that to reassure you guys.

So glad football isn't on today. Today will be guaranteed stress free. I'm also very glad you guys have also found this forum and I hope to share my optimism with you when I am on the other side of this.

All the best!

[seishin]

I'm in a similar situation as Hankster where an appointment with a MG-expert neuro is coming up but respiratory issues are increasing in the meantime. (can't open jaw wide, not maneuvering food well with tongue, mucus & food stuck in throat, pressure pain around sternum, ache in core muscles, exhalation is cut off abruptly when sitting up or lying down, feel a pressure in my head, can't sleep easily due to feeling like I'm not getting enough air,...)

Because of three bad experiences in previous visits to E.R., I hesitate to go again since they've sent me home basically saying they thought I'm a hypochondriac.

I had hoped to make it until the Feb 4 appointment but I don't think I should wait. If I do as I'm planning and search for a pulmonologist or doctor tomorrow, what are the tests I should make sure they do so as not to send me home with a false negative? I know about the arterial blood gas but should I ask for or say anything else?

Thanks.

[hankster1]

Hi seishin,

I am sorry to hear about your difficulties as well. I absolutely sympathize with your situation, as I have been in and out of the ER without any help. Fortunately my last stint in the ER brought me a Neurologist that seems very open to my symptoms.

While I am very new to Pulmonologist appointments, I do know that they did a Pulmonary Function Test that showed that my lungs were working properly but that my muscles were not functioning properly. I have not yet seen a Pulmonologist yet. I do hope that you are able to get this test done as it was very informative for me. Please let me know how your Pulmonologist appt goes.

I did want to post an update. I have had an increase in symptoms, I am having difficulty enunciating words, my speech may be slurred a bit, I'm not entirely sure how I sound to others. Also my thighs have become increasingly weak. I spoke with my Neuro this morning and I am going to get my first round of IVIg after my LP on Friday. I am so relieved that I may be receiving treatment soon as this has been going on for months and my symptoms have been increasing daily at this point. My Neuro and I are in contact and we have decided to hold off on going to the ER, mainly because I really didn't want to go and there is very little they could do for me there. So I am happy with the current decision and will update everyone after my IVIg.

seishin, Please let me know how things progress with you. You're in my thoughts!