The ghost within. What to tell my Kids? Please reply!

[Nick R]

My name is Nick and I thankful to be here. I want to be brief yet give enough detail in hope that someone in THIS community might give me a different perspective.

After 19 years, I was just diagnosed with Myasthenia Gravis and honestly I am not sure the Dr. is totally accurate so I am hesitant about sharing the news yet with my family.

My brief background- At 28 I had endoscopic sinus surgery due to persistent infections. I immediately woke from anaesthia in severe pain. The day the packing was removed from both sinus cavities, I could feel the gauze tearing from the inside of my sinus cavities.

After 4 years of persistent pain and trying nerve blocks, anti inflammatory and anti seizure meds, I finally went on opiates. Nine years ago I was diagnosed with moderate sleep apnea and never did adjust to the CPAP masks as they put pressure on my pain points in my face.

About 6 months ago the double-vision set in. The double vision usually came as the day progressed and finally I went to neuro opthamologist to get diagnosis. Why am I skeptical? I have gone to a fair number of doctor's who were very dismissive of my complete fatigue/exhaustion/malaise which has diminished quality of life by no less than 50%.

My MRI of my brain was negative for ME and my regular neurologist has been treating me for pain that in her opinion was caused by the sinus surgery.

I take 60mg of morphine sulfate 2 times daily and methadone 10mg 4 times daily although I have been cutting back on the pain medicine in last few weeks. My wife who is a oncology certified cancer nurse/advocate just does not understand how I can be so "lifeless".

Can anyone tell me when the fatigue/exhaustion sets in, how long are you sick/out of commission? I might have 3-4 good days upright all day and 3 days when even with nuvigil or amphetamines can barely get out of bed for a few hours each day.

The lack of physical and mental stamina I feel does not match well and the treatment for myasthenia has taken away double vision but energy still very poor.

I realize I have bounced around here and tried not to give too much info. that I bore anyone with details. Many people have described fatigue but I did not read how long they experience the fatigue. Could it be too much pain medicine and sleep apnea that create so much exhaustion?

With the exception of the few good days in the week, mine is definitely a huge obstacle.

Thank you for your time and any responses are appreciated.

 

[JennyJenny]

Hi Nick.
One thing I noticed is that you had an MRI for an ME diagnosis. Did you mean MS? MRI's are not utilized for diagnosis (that I know of nor an official one) and I think to see anything in an ME patient's brain it has to be an fMRI and read by someone very qualified in the field, probably a researcher like Dr. Montoya at Stanford (although his research fMRI's were pretty obvious).

One of the tell tale signs of ME/CFS is the Post Exhertion Malaise (PEM). Whenever you do any activity, does a fatigue come on due to it? It may be a mild fatigue where you feel weak, muscle weakness, tired, cognitive impariment or can whollop you and put you in bed like you have a severe case of the flu.

I am going to post the SEID criteria only because if it had existed back in 1979, I could have been diagnosed using it. And it very well may be the new criteria.

It does sound like you had a sudden onset which can happen with a surgery and perhaps you had bacterial infection that was your catalyst.

Diagnosis requires that the patient have the following three symptoms:

1. A substantial reduction or impairment in the ability to engage in preillness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
2. Post-exertional malaise,* and
3. Unrefreshing sleep*

At least one of the two following manifestations is also required:

1. Cognitive impairment* or
2. Orthostatic intolerance

The problem with ME/CFS is that it can take time for even a patient to recognize symptoms. And CF is can be a symptom of many illnesses yet it is not CFS which is an illness/disease.

Hope this helps.

 

[Cort]

Hi Nick.
One thing I noticed is that you had an MRI for an ME diagnosis. Did you mean MS? MRI's are not utilized for diagnosis (that I know of nor an official one) and I think to see anything in an ME patient's brain it has to be an fMRI and read by someone very qualified in the field, probably a researcher like Dr. Montoya at Stanford (although his research fMRI's were pretty obvious).

One of the tell tale signs of ME/CFS is the Post Exhertion Malaise (PEM). Whenever you do any activity, does a fatigue come on due to it? It may be a mild fatigue where you feel weak, muscle weakness, tired, cognitive impariment or can whollop you and put you in bed like you have a severe case of the flu.

I am going to post the SEID criteria only because if it had existed back in 1979, I could have been diagnosed using it. And it very well may be the new criteria.

It does sound like you had a sudden onset which can happen with a surgery and perhaps you had bacterial infection that was your catalyst.

Diagnosis requires that the patient have the following three symptoms:

1. A substantial reduction or impairment in the ability to engage in preillness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
2. Post-exertional malaise,* and
3. Unrefreshing sleep*

At least one of the two following manifestations is also required:

1. Cognitive impairment* or
2. Orthostatic intolerance

The problem with ME/CFS is that it can take time for even a patient to recognize symptoms. And CF is can be a symptom of many illnesses yet it is not CFS which is an illness/disease.

Hope this helps.

Great post Jenny! I agree. There are no diagnostic MRI test for ME/CFS. There certainly are studies that show problems in the brain but there aren't enough of them for a consensus to form on what an ME/CFS patients brain looks like on an MRI .

Fatigue is common in autoimmune disorders. A recent study found that the kind of fatigue in ME/CFS is different from that in multiple sclerosis: MS patients had lots of fatigue but they didn't experience nearly the amount of post-exertional malaise (PEM) that people with ME/CFS did. as Jenny notes it is considered the hallmark symptoms of ME/CFS.

ME/CFS can certainly be triggered in many ways including surgery.

 

[Nick R]

Great post Jenny! I agree. There are no diagnostic MRI test for ME/CFS. There certainly are studies that show problems in the brain but there aren't enough of them for a consensus to form on what an ME/CFS patients brain looks like on an MRI .

Fatigue is common in autoimmune disorders. A recent study found that the kind of fatigue in ME/CFS is different from that in multiple sclerosis: MS patients had lots of fatigue but they didn't experience nearly the amount of post-exertional malaise (PEM) that people with ME/CFS did. as Jenny notes it is considered the hallmark symptoms of ME/CFS.

ME/CFS can certainly be triggered in many ways including surgery.

I am really trying to find any small miracles right now and certainly thank you for your response yesterday. I am grateful! Sorry if I might have confused you yesterday.

The brain scan was to see if I might have MS. Of course, cognitive issues have been in play for many years now. Somehow, the cognitive issues are are easier because I have accepted them.

I am certainly at a critical point in my journey. The "monkey on my back" (fatigue) needs to give me some breathing room! I believe the fatigue had a huge impact on me losing my job. Having a health issue and unemployment can be challenging enough but we are financially treading water and I need to work.

Three years ago we took savings to help others in need. Besides 3 12 hour shifts in the ICU, my wife started the very 1st oncology certified nurse navigation/advocacy program in Florida. She is not paid and it is so hard to see everything she tries to do to help those fighting cancer.

Maybe a little more info might trigger ideas from your community knowledge. At 15, the glands under both armpits swelled to the size of golf balls. I do not recall being sick and they were not tender. They were removed and biopsies were negative. My father who was a doctor was very concerned, but never shared with me his thoughts.

The next issue I had within short amount of time was mild hand tremors. I have had suffered a fractured skull and several concussions prior to that so the tremors were not really explored. As I mentioned, I do have sleep apnea but with the pain in facial regions, can't tolerate any masks.

I also get testosterone shot's, but they don't seem to help much. I set my alarm for 5 a.m., get up and take either amphetamine salts up to 30 mg, tried pro/nuv/modafanil but ins. won't pay for these now.

I have tried so many treatments, shots and procedures over the years to regulate and try to manage the pain.

Now I just need a miracle in the form of a supplement or anything else that might just provide me with enough energy that I could actually feel like I could keep a full time job if I could find one. My last job that I lost had me driving a lot and falling asleep in my car was too common and frightening.

I wish there was a doctor that could share with me or even try to give me an idea on how every symptom and the medications contribute and culminate with where I am today. I have calculated the cost of my health problems over the years and it is shocking what I see.

My neurologist is o.k. in trying to treat the pain but she does not know much about myasthenia gravis what I was diagnosed with OR what I really think is CFS. Could anyone suggest a direction/dr. in Florida worth seeing?

Should I have posted to the community at large? I hate writing done a bunch of information about myself and MY problems. There are so many people faced with such a difficult journey. Many blessings and thank you!!!

 

[VJ Knutson]

There is a CFS/ME/FM clinic is Miami and Fort Lauderdale - Dr. Nancy Klimas runs it.
Nick, you remind me so much of myself when I was first diagnosed - unwilling to let go of the reality I had built for myself. I remember my doctor advising me to reduce my workload to part-time or possible fewer days a week, and I did try that for awhile, but like you, I was falling asleep at the wheel (on the way to work) and dragging myself through. Pushing yourself, with this disease, just seems to make it worse. For me the consequences of denying the seriousness of fatigue was that I am now home-bound, and for the most part spend my days in bed. It has been this way now for fifteen months. I still fall into the trap of doing more than I should on the days when I feel a little bit better - the past two times ending up in the hospital.
I have a wonderful therapist who helps me adjust to the losses, and a doctor who has experienced the disease firsthand (she was off work for 5 years) and now works part- time. Her strategy is that she works 4 days a week, and schedules two, one hour rest periods into her day.
I know this disease is hard to come to terms with for all involved (especially family members who are medically trained and unaware of it), but hang in there - educate yourself, and get all the help you can.
V.J.

 

[Cort]

There is a CFS/ME/FM clinic is Miami and Fort Lauderdale - Dr. Nancy Klimas runs it.
Nick, you remind me so much of myself when I was first diagnosed - unwilling to let go of the reality I had built for myself. I remember my doctor advising me to reduce my workload to part-time or possible fewer days a week, and I did try that for awhile, but like you, I was falling asleep at the wheel (on the way to work) and dragging myself through. Pushing yourself, with this disease, just seems to make it worse. For me the consequences of denying the seriousness of fatigue was that I am now home-bound, and for the most part spend my days in bed. It has been this way now for fifteen months. I still fall into the trap of doing more than I should on the days when I feel a little bit better - the past two times ending up in the hospital.
I have a wonderful therapist who helps me adjust to the losses, and a doctor who has experienced the disease firsthand (she was off work for 5 years) and now works part- time. Her strategy is that she works 4 days a week, and schedules two, one hour rest periods into her day.
I know this disease is hard to come to terms with for all involved (especially family members who are medically trained and unaware of it), but hang in there - educate yourself, and get all the help you can.
V.J.

Great advice VJ...

 

[Cort]

I am really trying to find any small miracles right now and certainly thank you for your response yesterday. I am grateful! Sorry if I might have confused you yesterday.

My neurologist is o.k. in trying to treat the pain but she does not know much about myasthenia gravis what I was diagnosed with OR what I really think is CFS. Could anyone suggest a direction/dr. in Florida worth seeing?

Should I have posted to the community at large? I hate writing done a bunch of information about myself and MY problems. There are so many people faced with such a difficult journey. Many blessings and thank you!!!

I would try Dr. Klimas. There are certainly no guarantees but you never know. With regards to pain I always think of low dose naltrexone and medical marijuana. The fatigue is probably the biggest issue though and I imagine that sleep comes into play there. That's rough regarding your CPAP machine...It sounds like if you can get at the pain - then you can use the CPAP - and then you might be less fatigued ?

 

[Nancy olson]

I cant say enough about my autopap machine. I could not tolerate the continuous blowing cpap. Ask your MD for the automatic machine that goes higher only when you stop breathing. Now masks yuckee things. Have you tried the nasal pillows? I change my mask style every 6months cause that is when insurance will pay form them. New to the market are masks that you change the cushion part every month and medicare is paying for them. I am using the Resmed Mirage FX mask cushion now, will try the one made for women next. It is real soft around your nose. The straps are a little weird. I put more elastic on it to make it fit better. I dont like that the air going out goes thru a round the hose so i put some tape over a little bit of it. Hahaha if you dont use a machine you wont understand any of that! You will feel sooo much better if you get your apnea under control. Keep going back to the sleep clinic untl you are happy. I cant work this site most days but i look at my email most days, hopefully i get an alert if you have more questions. This site is to much for my brain. Hahaha

 

[VJ Knutson]

I had to stop pain medication because of a heart problem, so was forced to look elsewhere. I see a wonderful Doctor of Chinese Medicine and acupuncture, and under her tutelage have eliminated foods that contribute to inflammation and receive regular acupuncture treatments, which is effective for me. I also do restorative yoga and receive weekly therapeutic touch treatments. Learning to using breathing techniques, visualization, and meditation has been very helpful and when I am able to incorporate them daily, have better days.