Desperate for help

I've been messaging with my doctors for the last month about my increasing pain. I've shared my struggles with neuropathy in my arms and legs, especially at night. I've voiced how I feel like I'm being pulled apart on a torture rack. I've stated that my pain makes it very hard for me to complete simple tasks and leaves me chronically exhausted. And then there's the afternoon crash. Missing out on three hours of my day regularly.

The Epicacten did help with this crash, but it left me feeling like a jet lagged tourist who downed a bunch of espresso to try and stay awake. Foggy headed and still exhausted, but unable to sleep. Not really much of an improvement. 

My primary doctor increased my night time Lyrica dose and that did help the neuropathy a bit. My muscular neurologist increased my Baclofen from three times a day to four to try and help the muscle cramps and spasms that were also increasing, but it did not help. That's how medicine goes! Sometimes things work great, but often they do not.

Then I did what I do best. I started researching some more on my own about Mitochondrial Myopathy and mito diseases. And there it was. The exhaustion, the pain, the neuropathy, everything I experience. What I also found was successful interventions using marijuana to combat the fatigue. 

In the past I've tried high CBD with little to no THC and it never did that much. It could help with night pain a bit, but never enough to warrant the cost. It's not like my insurance covers our (legal in my state) dispensary! Too bad. 

Due to my previous lung conditions and my asthma I've never tried any kind of inhalation, only edibles. But the more I read the more I learned about vaping and how it is better than edibles for pain and energy in many ways. It's instant, you can control the dose better, it's more cost affective and best of all the drug doesn't go through your liver and kidneys, but straight into your blood stream from your lungs.

I researched the best strains for energy and pain. Then armed with this knowledge we went to the dispensary. The employee was very helpful and set me up with a vape pen, cartridge and night time pain gummies to try. She also helpfully explained that if you're trying to help pain you need THC. "Without a little high you can't get rid of pain effectively". 

I'm going slow with it and learning what works best for me, but on the very first day of using it I didn't need a nap. Last night I didn't have the gummy and for the first time since I started taking it I had painsomnia. I'm now going on day FIVE with no mid-afternoon crash. It feels amazing. My pain is also much more manageable. It isn't helping my mobility or muscle issues, but the pain and fatigue are very much improved, so I'll take it!

A doctor of mine did get back to me with another medical suggestion. The medication would involve a hospital stay and the side effects were very risky. For now I'm good with trying what I have. If it becomes a permanent part of my coping tools, then I'll inform my doctors about it. But for now I'm still in the trial phase.

This is by far the best recommendation list for dealing with exhaustion. Shared from the Mito Action Group. 

General Guidelines for Dealing With Fatigue:

Rearrange Your Environment

• Keep frequently used items in a location where you will use them. This avoids having to carry them around or do extra walking to get them.
• Replace existing heavy items with lighter one (plastic vs. glass).
• Use good body mechanics – don’t carry equipment if you can push it. Slide, don’t lift, push, don’t pull. Maintain good posture. Bend at the knees, not the waist. Eliminate unnecessary motions. Use both hands when possible while carrying. Adjust work-spaces such as raising a tabletop to eliminate awkward positions.
• Install long handles on faucets or doorknobs.
• Consider moving your bed to the first floor to eliminate stair climbing.
• Organize the kitchen for maximum efficiency. Place the most often used items on the lowest shelves. Make a cooking area having all pots and pans together close to the stove. Spices and utensils should also be as close to the cooking area as possible. Consult an occupational therapist to help personalize the ideas listed here and enlist a helper or two to rearrange your living environment.

Eliminate any Unnecessary Effort

• Sit rather than stand whenever possible, i.e.: when preparing food, washing dishes, when talking on the phone.
• When dressing, sit, have your clothes at arm’s length, dressing the lower parts of your body first as this requires the most energy expenditure. Bring your feet up to you rather than bending down to them. Work slowly and methodically, resting when needed. Buy clothes that are easy to care for and put on.
• Shower using a shower chair, remain sitting when shaving your legs instead of bending over, have a chair in the bathroom so you can sit while drying yourself.
• Use adaptive equipment that is appropriate to your situation, i.e.: book holder, a jar opener, a reacher, text to speech software or hand-free headset for your phone.
• Organize the method in which you work, repetition of the same methods will increase proficiency and save time and energy.
• Soak your dishes before washing, let them air dry or consider using paper products.
• Buy prepared foods and try to keep prepared healthy snacks available such as precooked hard-boiled eggs, cheese slices and fruit.
• Shopping can be an exhausting activity so try to find a grocery store that accepts phone orders and delivers. A few large grocery chains have online ordering and delivering. If you go shopping, use electric carts or wheelchairs, which most large grocery stores make available. Other items are available from catalogs by mail, phone or the Internet. Take advantage of these effective alternative ways of shopping. Think of how many stores you can visit without leaving your chair!

Plan Ahead

• Pre-plan your activities and try to make a daily or weekly schedule.
• Ask yourself a few questions: Is there too much to do on a single day? Are heavy tasks alternated with light ones? Are heavy tasks distributed throughout the week? Have I scheduled enough time to for activities with enough time between each one to rest? Rushing takes more energy!
• Make fewer trips around the house; if you have stairs, organize your day so you minimize the need to climb them.
• Cook in larger quantities and refrigerate or freeze extra portions.
• Work rest breaks into activities as often as possible. Take a break before you get tired.
• Try to plan some type of exercise into your weekly routine. Toned muscles require less energy to function.

Prioritize

• Eliminate or reduce tasks that aren’t that important you.
• Remember to delegate tasks to family or friends who offer to help.
• Consider hiring professionals, such as a cleaning service or lawn service, to cut down on your workload.
• Decide  what are the most important things in your life and spend your energy money on them.
• Always listen to your body, know your limits and don’t let yourself become overtired.

If you do overdo it, try not to be too hard on yourself. Walking the mito path is very challenging and learning how much activity is too much is sometimes determined by when we crash! The goal is to live a rich and full life with the least amount of mito crashes as possible.

Good Doctors and Not So Good

I've learned a lot from having a chronic illness. Specifically about the American medical system and those who work for it. I think I had some serious rose tinted glasses when it came to doctors. Overall I'd had good health and anything wrong with me had been very straightforward. Even my years of endometriosis. But when it comes to having something that there isn't a clear test for or that requires years of multiple people guessing at what's going on with you, then that's where things get more dicy.

Doctor's don't like the word "guess" even though that's what they do with me. I have a rare condition that they "think" they know something about even though all they're really doing is guessing. It's a "best guess" but still just a guess none the less. 

I've learned that some people really suck at bedside manners. Some doctors think I'm doing a "self fulfilling prophecy" and "not trying hard enough to be well" (real quotes.) Others think they know exactly what's wrong with me and respond in frustration when I continue to be sick. Some are fantastic in person and then never respond to my messages between my three month appointment wait times. Some say they're going to give me referrals for services they think will help and then don't, or do it a month+ later (typically after I message them repeatedly). 

All of this takes a ton of time and energy. I told my husband the other day that when people ask me what I do for a living I should just say "I'm sick" because it's seriously a full time job.

Because I'm a visual person I'll show you how most of my appointments start out:

And then it can go one of two ways.

Poorly...

Or

Well...

I've only walked out of an appointment once. And let me say that it took me a very long time to even comprehend that just leaving is an option. They are there for me and if they're not helping, or worse... I can always just get up and go. No need to waste my time or theirs.

In general my encounters have been very positive. Most doctors genuinely care and are trying their best to help me. Some even admit that they don't know much about my condition and are just trying their best to help my symptoms. I seriously appreciate that.

Wheelchair Van Shopping

Terrifying, daunting, uncomfortable, overwhelming... maybe those words begin to describe what it's like to shop for a wheelchair van. These are just a few reasons I suspect most wheelchair users choose to either not go out much, or to take public transportation. The other reason? COST! DAMN! I mean come on! The prices of these vans will take your breath away.

My husband and I began thinking about pulling the trigger on a wheelchair van this summer. We're fortunate enough to have actual options in the city we live in. Most people I think are stuck with a single dealer or buying private. I thought I educated myself and was prepared ahead of time from internet research. Nope. So let me break down my experience for you so far in the hopes that it might help you out in your search.

That's some serious "RBF" going on there!

Step 1: Find what kind of ramp you want.
Electric? Manual? In-Floor or out? There are many options here. I want an electric "Fold Out" which is not the same as "In Floor". The reason is because if the electric equipment has a malfunction (and we know how common that is) then you can still manually get your ramp up and down. You're not trapped in your chair till some magical help comes along.

Step 2: Will you ever be driving?
I've heard a lot of stories from people who thought they would drive, but then due to their progressive condition only drove for a year or two. It ended up not being worth the huge expense of making the drivers side accomidate their needs. Case in point. When we first started looking I was still driving. I was interested in a "Transfer Drivers Seat" meaning I could easily transfer from my chair to the drivers seat to drive. Well, I'm no longer driving and I don't need that expensive feature.

One of the many benefits of buying a van from a dealer vs private party is that as your needs change you can have your van modified. For example I don't need a transfer passenger seat yet, or a chair lock down in the front instead of a passenger seat. If that changes in the future I can have our van adjusted.

Step 3: What kind of van do you want?
This is called the "Chassi" in the wheelchair van world. Common makers are the usual. Honda, Toyota, Chrysler, Dodge. Each comes with their own pluses and minuses. I am very tall with long legs and an "ample bottom" so having a comfortable, roomy passenger seat is really important to me. Also due to my chronic pain, seat heaters are really a big plus. Because of these and a few other important features I'm hoping to buy a Chrysler Pacifica Touring-L Plus.

Step 4: What's your budget?
Wheelchair vans range wildly in price just like regular cars. Also like a regular car you get what you pay for (in my opinion.) The older the car, the more miles on it, the less expensive it will be. You will need to consider--The Chassi Price, Conversion Price, Equipment Cost (tie downs, modifications to your chair to be locked in, transfer seats, driving mechanisms...) and Warranty. Then of course there's taxes, documentation fee, license fee, smog, registration and every other nickel dime fee there is. 

Some Chassi brands will give you a small rebate. Usually around $1K and only if you're buying brand new. A super small drop in the bucket. In my state there are no programs to help you with the cost. It's considered a "non medical necessity". Though my dealer mentioned we might be able to deduct the cost of the conversion and equipment as a DME (durable medical equipment). We'll check with our accountant about that.

And some cars have lease options instead of buying. But I have found them to be too rich for my blood. However if money is no object and you just want to have the best you can buy it should be an option to consider.

I was happy to hear that there are programs where veterans can get a van almost completely covered (they should be able to get whatever they want for free if you ask me). And my dealer said "Victims of violent crime get a 30K payout to put toward the cost of a van". 

The van we're considering is a 2017 (two years old) with super low miles. "Out the door" it will cost $61,094.87 to purchase. Luckily we have excellent credit, but I was told that financing a van can be difficult as it isn't treated like a typical car purchase. You can also get financing for up to 10 years to make the monthly payments a little bit easier. For us those payments are still 4x our current monthly car payment so that's a huge, scary undertaking.

The next steps are to talk to our banker about it, sell my husbands car and pray that my student loan debt is forgiven due to permanent disability. I'm checking the status on that daily. Hopefully we can pull the trigger soon because it would really improve my quality of life to have "Dory" with me whenever I need her. 

Help is HERE!

I had three medical appointments last week, each good in their own way. The great news is that my meningioma (the benign brain tumor from last year) is all clear, no new growth and my brain bounced right back in to fill the cavity. YAYYY! At least my brain is athletic! So that's fantastic news. I also don't need another brain MRI for another year. 

Getting medical help is very exciting

My neurosurgeon recommended I do 23andMe genetic testing. He said they can be pretty thorough and may find something that we don't know about yet. So that's in the works right now.

The next bit of good news is a have a neurologist that I love. He was super compassionate, a great listener and had a lot of fantastic ideas on how to help me NOW. I told him most of my doctors get so caught up in wanting to find out what the underlying cause of my issues are that they overlook how to help me suffer less today. He was awesome and did both. 

He reviewed my chart, asked questions and went over my timeline with me. He asked about my symptoms and was upfront with what he knew and didn't know. He's an MS specialist and he wants me to see a Myopathy specialist in the same office next week just to talk genetics, but he's all about helping me now. Also many of my symptoms are similar to MS, even if the cause is different. 

The biggest takeaway for me was that he said I have Mitochondrial Myopathy (MM). He said "The two hallmark symptoms of MM are muscle weakness with any kind of exertion" (check) and "Muscle energy crash with any kind of illness" (double check). No one had ever put it to me that way before. I asked him to officially change my diagnosis in my chart and I hope he does so soon. It's helpful for me and to keep everyone on the same page. 

BUT he also had some other ideas and suggestions. First off he thinks my dizziness, foggy brain and vision problems may or may not be connected to the myopathy. He thinks it's just as likely that I'm suffering from "Intractable Migraine". He said with this type of migraine it's more likely that you'll just have my symptoms instead of the classic traditional migraine. He said it's also incredibly common to have this type of migraine after my kind of brain surgery and/or with my myopathy... but bottom line he considers it a different beast from MM. Interesting. 

Bruce wants to help too

Help take a nap that is

Before diving into a new medication for the possible migraine he recommended I try a combination of Vitamin B-2, Magnesium (800mg a day) and Feverfew. It comes in one pill (thank God!) in something called "Migrelief". So I'm giving that a go for a month till we move try a possible prescription for it. 

He also gave me a lot of referrals for services that might help my CURRENT symptoms. YAYYYY!!! I can't even tell you how amazing that was to hear. 

So here were my main takeaways and diagnosis complete with links:

• Intractable Migraine. Could be causing the dizziness and foggy headedness.
• Dysphasia. Fancy name for choking on your own spit like a big dork for no reason.
• Physical Medicine and Rehabilitation. A magical place that will help with my tools and other mobility needs.
• Mitochondrial Myopathy What the neurologist thinks is my overall diagnosis and what's going on with my muscles (due to a genetic mutation.) 
• Speech Therapy For my issues I'm having lately with talking.
• Temporal Muscle. Issues with scarring and muscle tensing from brain surgery last year.
• Therapies for Mitochondrial Disease

(I received no incentive, kickback, discount or payment for ANY of my links.) 

One Month Later

I am exactly one month into a three month "temporary break" from work (SSI). One month ago I had my last day in my beautiful office. One month later this "break" does NOT feel temporary.

I'm slowly coming to terms that my condition (currently just called "Myopathy") is progressive and degenerative. New symptoms still crop up from time to time and none of them leave once they arrive. They may get stronger or weaker, but once here they don't just set up camp, they build a condo and invite friends.

Not very long ago I could push myself to walk around our block with my dog. If I were to do that today not only would it take every spoon I have, but I think I'd fall over. The dizziness is a bit better, but I'm still very foggy headed, especially once I get tired. And that happens all the time. 

In short, I'm unable to work.

All the moods of me.

This Sunday I have another brain MRI. And on the 22nd I have a follow up with my primary care doctor who I trust completely. At that appointment I'm going to talk with him about extending my disability leave. There's no way I can go back to work as I am.

My hope for something or someone to "fix me" is waning and I feel a pull to just do what I can every day. What I have is obviously still a mystery to all medical professionals, though they've been able to rule out quite a bit. To me it just feels like everything my body went through during the TB and brain tumor left me with something "turned on" that never should have been. Or not. Who knows? All I know is I can do less this week than I could the week before and so on and so on.

I also think I need to make some small modifications to my house while I'm still able to be so mobile. Planning ahead is never a bad thing. 

Disability, Dizziness and Doctors

It has been one week since I've been out on my three month medical disability leave from work. Luckily I've had my mother visiting to distract me, otherwise I think I would still be crying almost every day. I dream about my work and miss it constantly. Unlike a lot of people I loved my job and I loved working full time. I do know that I literally did everything I could to keep working. My body just couldn't manage it right now and that's ok.

I saw my doctor about my dizziness, headaches and foggy headedness. He ran some tests and found that my thyroid replacement medication was too high a dose. Today's my first day on a lower dose and we hope that's the cause. 

I also went to my eye doctor yesterday because OVERNIGHT my vision got worse, especially in my right eye. Everything bad seems to always start on the right side of my body. No idea why. He confirmed that in the eight months since I saw him both my eyes have gotten worse, but especially my right eye and especially close up. He said it could be from the Baclafan, or it could be from the myopathy. No way to really know. 

But hey! At least I don't have to take time off from work to make all these appointments. Right? Now I get to be a full time patient. 

Speaking of, I also get to schedule my next brain MRI today. I have the follow up from my brain surgery soon and my primary care doctor also wants to rule out anything scary going on causing the dizziness. I appreciate his attention to detail. 

Lastly my husband and I have been talking about getting a wheelchair van early next year. Luckily there are a lot of options where we live, including a lease. The gas milage on them is terrible, but it would give me a lot more freedom (like all my other tools). I want my life to stay as big as it can. Using my big chair is not only more comfortable, but it saves me a lot of energy over other devices, which means I can be out more doing the things I love!

Stay tuned for car shopping. Which is more fun than a brain MRI. 

When did Myopathy start?

I've always placed the start date of my muscle weakness April 26th 2018, 13 days after starting Plaquenil. My husband has felt that it was the Plaquenil that caused my Myopathy. But I had a memory the other day that places the real start date MUCH earlier than that. 

I remembered being at Disneyland in November of 2017 and feeling like I was being especially tossed around. I even told my husband that I felt "weird," like my muscles weren't holding my body in place like they should be. Upon looking back I'm wondering if that was my first sign of myopathy.

Not having a very specific diagnosis is frustrating, not having a clear cause is also frustrating, but now not even really being clear when it could have started? Yes. That's hard.

Is it just a genetic mutation that somehow got turned on? Was it the affects from my brain tumor that I'd had since at least 2015? Was it from the Latent Tuberculosis or the medication used to treat it in 2016? Is it from the Plaquenil I was put on in 2018? I may never know. 

Having a chronic illness often means endless doctors appointments, new symptoms that sprout up literally overnight and having more unanswered questions than answers. I'm slowly learning how to live in this zone of "unknown".

I may not know exactly when my muscles started breaking down, but I do know how it rules my life today. I know I can't dwell on what I used to be able to do yesterday that maybe I can't do today. And I can't focus on what I may not be able to do tomorrow. I live each day as best I can and feel grateful that I'm not in this alone. 

Rest and Play

Last week my husband and I celebrated our 25th wedding anniversary. Although we call ourselves the "Adventure Buddies" we were more than ready for some serious rest. We drove three hours from our home to the coast for some fresh air, good food and plenty of relaxation.

I fell in love with this swing on our patio, even though it made me a little dizzy. I think I need one at home now.

The hotel we stayed at, the Bernardus Lodge and Spa, had a beautiful garden, delicious restaurant and was completely wheelchair accessible. It was just what my body and soul needed.

I'm learning how to have "relaxing adventure" lately. Case in point, the hotel had a convertible car that we were able to "borrow" for a lovely coastal drive. It was a lot of fun, but an easier adventure on my body than say, a long beach walk, which is something we would have done instead in the past. 

Some "adventure" takes money, but other things I can find for free. Like this fun, organic farm stand we stumbled upon on our way home. They had a cute area for "kids" that I took full advantage of. I spent my muscle spoons for the afternoon getting in and out of this GIANT adirondack chair and it was totally worth it. I felt like such a kid!

For me play is just as important as rest. If I spend too much time just "adulting" I'm one unhappy lady. 

Of course one of my favorite ways to rest and re-charge is to snuggle with my sweet girl. 

My husband and I also "play" with (gasp) our friends! We belong to a local group of tiki lovers who are as child-like and playful as we are. We try to make time at least once a month to dress up and hang out with our buddies. 

Life is a balance and I'm still trying my best to find the perfect mix of work, rest and play. 

(** I received no reimbursement for my mention of Bernardus Lodge and Spa. But if they'd like to hook me up in the future, that would be dandy!)

Body Scare

So I got to have my first ambulance ride two nights ago. That's a check off the "bucket list of chronic illness" that I was hoping to avoid. 

Call the wambulance!

To sum up what happened was that my muscles didn't want to breathe (or forgot how?), I was incredibly dizzy, had a horrible headache right in the front of my forehead and my muscles (especially my hands) got even weaker. 

I woke up my husband around 1:30AM and tried to calmly let him know what was going on in my body this time and ask him to call an ambulance. 

Although it was my first ride in an ambulance, THIS is a familiar sight!

They ran a lot of tests, gave me some Tramadol and Benadryl through my IV and called it a night. They said I have myopathy (GASP!) and a migrane (strange) and dizzyness for an unknown reason. The meds did help though and I politely declined their offer to admit me and put me on a ventilator. I'm good for now thanks. 

The full IV also seemed to help.

It wasn't until this morning that I remembered the Manuka honey that I tried the day I had the "flair." I came home from work and told my husband that my armpits hurt (I'm sure it was my lymph nodes) and I didn't feel good. Then that night... ambulance. I later read that some people can be allergic and have a reaction to it. Duh! I think that's what happened.

It's also a good reminder for me to watch out for unpasteurized things. My immune system is very sensitive and I think I should stay away from certain things. No wonder the Benadryl the hospital gave me helped! No more Manuka honey for me, just to be on the safe side. 

So now I just say "no" to: Raw fish, Manuka honey, anything unpasteurized, gluten, processed foods, fast food or too much white sugar. 

Not a very big list, but I still struggle with the sugar and processed foods. And despite being an evil company I still miss Taco Bell BIG TIME! But as my husband reminds me "Taco Bell is not plan kick ass."

Not Alone

When you're battling a chronic illness it's very important to learn that you're not alone. I recently joined a Myopathy Support Group online. Many people in the world struggle just like I do with something not so cut and dry to diagnose and that has no real treatment. 

Here's a sample of what I found relatable and helpful when it comes to myopathy.

"I’m similar to you, acquired myopathy due to steroids and/or cyclosporine for another medical condition but other extras sprinkled on top to keep life interesting"

"After reading your story you have my admiration. Mine seems to be through having RA. I'm in the same situation concerning work.. still waiting for some sort of help off the medical profession."

"My doc claims mitochondrial also and put me on coq10. Now i am a bit freaked. My ins refuses to pay for dna testing. What now?"

"Lyrica is my life saver as well! No idea what I have either; many strange, wrong diagnoses. I've come to accept that I'll never know. I don't care anymore."

"I’m going through a similar situation but doctors keep passing me around. At first I had mitochondrial myopathy. Then it’s fibromyalgia. Then it’s all three. Mitochondrial myopathy, fibromyalgia and ddd with herniated discs and spine tumors with stenosis."

"I've first was diagnosed with myopathy in 2012, the doctors couldn't quite determined which kind of myopathy i have, i started going to different doctors and it really got a toll from me and i felt really down... for such an optimistic person like me being down was the worst thing i could think of, so i decided to just stop! I said to myself if i get into a sick person state of mind and let my disease define me that's a terrible situation, worse than the actual disease...so i lived my life regularly on some kind of deny, some kind of a lie i tell myself...for about 5 years... but with recent changes in my life and in my mind, now i feel strong enough to deal with anything life will throw at me, and do it with a smile on my face and thankful for the things i have in my life, not thinking about what i don't...  sooo, bottom line... this is the tip of my story... nice to meet you all, I'm taking my genetic tests hopefully really soon...if you have any tips for me regarding life style nutrition or tips in general i'd love to hear them."

"...So I'm ready to just be done. I'd like to get back to my life and as of October 6th I'll only be seeing my docs for yearly progression checks and that's just fine with me. It was just getting so daunting to try to live my life in between doctor visits so I'm just going to NOT do it anymore."

"So if your dna testing came back unrevealing, does that necessarily mean you don’t have myopathy?"

"OK I have been posting about food. And at this point in time I am taking guesses as I cant afford the DNA testing. But my doc suspects its animal proteins..."

"Hi. How does everyone cope with the leg muscle pain. Can't believe how bad it gets... The pain can cause you to question your sanity"

"After 41 years and getting a diagnosis of what was causing my muscle weakness (myopathy); my doctor told me there’s nothing he could do for me. He did explain that my body doesn’t process ATP, the final breakdown of carbohydrates into all the cells in your body. Also, I had severe exercise intolerance, no endurance or energy and extreme fatigue."

"Anybody see the Netflix show Diagnosis? First episode was a girl with Myopathy. I knew it almost immediately it was a metobolic myopathy. No dr had ever mentioned it or offered genetic testing... NOTHING. Breaks my heart people with rare disorders have to get picked for a show for help. I have had to do my own work and know more than most drs about all these disorders now. That is just sad to me. I know they can't know every disorder off the top of their heads, but she suffered for years and years... Like most of us, I suppose."

"I was originally referred to a neurologist because my gp wanted me to have a muscle biopsy. I had been having severe muscle cramping and severe leg and arm weakness...I don’t know what to do and I almost feel hopeless."

"out with family but legs feel weak have hard time walking even with sitting for a but feel like legs could give way (but some how they keep me up)"

"-it never stops going to appointments, I like my weekends, I take them seriously, September 3rd I see the surgeon to schedule muscle biopsy but my neuromuscular doctor also wants me to see a dietician, i also see 11 other doctors for other issues but I'm exhausted, you all must be exhausted, I am.."

"I've quit chasing answers. I was able to retire on disability. My wife is a teacher and works but I still have kids at home. One in college. I was chasing answers from Ohio then on to University of Michigan, a VA Hospital in Michigan, to John's Hopkins in Maryland and they sent me to a Mitochondrial Specialist at University Hospital in NY City. (there are others) 
I've been miss-diagnosed several times like some of you, ALS, MS, and then Mitochondria Myopathy. I do have Myopathy and Neuropathy confirmed from two different muscle biopsies and other test. I'm a diabetic as well. Whatever I have I quit chasing it. Too much money in medical bills. 
My family doctor and I just treat symptoms. I take coq10, vitamin D, Tramadol, magnesium etc. I've tried many creams and other remedies for muscle pain and cramps. I do feel better than I did 7 years ago but I have to pace myself and plan activities ahead of time.
I have to have my sleep and rest or I won't make it through the day.
I am exercise intolerant and very heat sensitive.
I use a cane for short walking and a scooter or power wheelchair for longer distances.
I'm just sharing so everyone knows your not alone."