Seizure EEG

So I had my EEG this week. I don't recommend them. The flashing light and hyperventilation were a lot more taxing than I had anticipated. It left me exhausted for about 24hrs. But when you stop and think about how much energy goes into forcing yourself to hyperventilate for three minutes... Well... I shouldn't have been surprised. 

Collage and pictures courtesy of my mom/driver/personal assistant/fairy Godmother

I'm constantly shocked by my lack of stamina. Even this many long years after my diagnosis. I think that could be some kind of body dysmorphia. I see myself as far far far more capable than I am. Always. In any situation. "Sure I can lift that couch by myself. Absolutely I can walk a mile over rough terrain. You bet I can swim across that canal. I'm invincible!" Or maybe I'm just hugely optimistic? We'll call it that and not pathologize.  

However, I digress.

I did the EEG and the report came back normal. My husband joked that "Nothing about you is normal." But I have paperwork saying that my little brain is. YAY!

A normal EEG doesn't rule out Silent Seizures. Bummer.

Now I'm going to just hold off on taking anything for seizures until I talk to Dr. Williams, my muscular neurologist at the end of this month.

One invasive medical appointment done. Nothing else till Botox for migraines hopefully resumes next month. IF my insurance approved it. 

Another eye infection

AGGGGGG!!!!

I woke up Friday morning with another small stye on my left eye. This time on the upper lid. I already had a televisit with my doctor scheduled to get some more Diamox for our upcoming vacation. So I let her know that I'm having recurring stye issues. She ordered me some prescription eye ointment. 

Two days later and it was looking much worse. So I did a Teledoc visit and he prescribed me some oral antibiotics. This morning it looked even worse.

I know I can be impatient with my body, but I'm really expecting it to look a little bit better by now. 

I can feel the swelling pressing on my sinuses and the back of my throat. The ear, eye, nose and throat really are connected. You have but to experience an issue with one to feel it in all the others. Luckily my ear is fine. Hahaha.

I've been doing hot patches, cold patches, gentle wash in the shower. Everything I can think of. Drinking lots of liquids, taking Ibuprophen for the pain. At least today it feels a bit less painful, even if the swelling is worse.

Since my last stye I have been:

• Changing my pillow cases weekly
• Not rubbing my face on my dog
• Washing my hands any time I touch my face (that I know of?)
• Washing my eyelids gently in the shower with baby shampoo
• Using clean towels every time on my face

I honestly can't think of what to do more? I just need to be super careful I guess. I'm suspecting it's wearing my contacts that could be a trigger. But my hands are always clean when I put them in or take them out. Maybe I'll start to wear them only on special occasions?

My poor hysterical body.

Any time there's an infection or a reaction my muscles also shut down. I am very physically weak right now. I'm also exhausted. So... tired... So I'm spending a lot of time resting. But I'm not convinced that laying flat down is what's best for my eye. It feels like everything needs gravity to drain?

What a mess I am.

Permanent disability denial

Well... THAT was fast!
It turns out I don't qualify for any form of disability other than State Temporary Disability. The very nice representative for Federal Disability explained that there are two ways to qualify for "permanent disability" and two forms of it (so that's three kinds total! WHAAA!?!) 

1. You have worked pretty much continuously for pay for the last 10 years. I think that number fluctuates based on your age. For me it was 10 years.
2. You and your partner (if you legally have one) are legally low income (including your assets like car, home, etc.)

Taking a dog "walk" (roll) break

He told us that unfair as it is being in school or a full time parent for the last 10 years doesn't count for anything according to the government. You need to have been paying into the social security system to be able to draw on it in any way before retirement age.

Also your partner working for 10 years doesn't count for anything if you're still together. But their income and assets count against you for the second type. 

I told my husband I don't know why they even call it "Disability" if your disability isn't the first thing they consider? Bottom line, the American government doesn't part with money easily (unless you're a corporate investor in the political system?) It's very messed up.

Overall I'd recommend applying over the phone. Just skip the online process completely. Also call your local office, not their main number. It's much faster to get through. Even if you think you may not qualify it's still worth applying because you never know. Same for temporary disability.

I'm grateful to a friend in my Muscular Dystrophy support group for encouraging me to apply for temporary disability even before I knew I would need it. I was very resistant when he first brought it up, but I did end up needing it and it has been a real life saver.

My puppy was helpful when I got stressed and sad.

So, I'm still unable to work and my benefits will max out soon. That means all the financial burden and pressure is on my husband, which I HATE! It really upsets me to not be able to make any money right now and YES! I feel like even more of a burden, which is an awful feeling.

He tells me all the time that I'm not. And logically my head knows it too. But you can feel much differently about something even if you know the situation is a contradiction. I FEEEEEEEEEEL like a burden period.

Stopping Topamax

It is important to remember that even the best, most caring doctor doesn't know the whole story. Doesn't see the whole picture. They (hopefully) do their best to care for you but at the end of the day you need to be the REAL specialist, advocate, researcher for yourself.

That said, Topamax was not for me. I tried 25mg for one month. My neurologist wanted me to give it two months and I said "no thank you". I understand why he wanted me to try it for longer, but the side effects were too much for me and the benefits not enough. 

And a little advice about being a wise consumer. ALWAYS read the FDA information vs the information from the manufacturers website. Always. Just skip their website completely actually unless you're looking for a coupon or rebate.

These are my symptoms that got worse on Topamax:

• dizziness
• dry mouth
• "foggy headedness"
• forgetfulness MUCH worse
• reduced my libido even more
• wiped out my appetite.

Well, that last one wasn't bad, but for some people it could be. I was also on the very lowest dose for the very shortest time.

Both my dizziness and the migraines I think are from my brain surgery. Even though it has been a little over a year, I think the nerves are just now growing back and I'm experiencing pain and dizziness. That's my theory and I think it's pretty solid.

So far what has helped me more than the Topamax has been...

1. Taking Potassium pills at night with plenty of water. This helped with the dizziness a lot. My neurologist suggested it when I said the Topamax was making things worse.
2. Taking more Magnesium than what I was already taking. Again, recommended by my neurologist.
3. Taking the over the counter supplement called "MigreLief". Recommended by... yup. You've got it.

There's plenty of other non medicinal things I haven't tried yet. I have my first follow up on the 12th with my neurologist and I told him I'd like to discuss them.

My muscle weakness seems to have hit a homeostasis (for now... Thank GOD!) That feels nice. I'm still doing what I can but careful not to push it. My body and I feel like we're on friendly terms and that's magnificent. I think she's a lot happier now that I'm not shaving her down like a sheep in the spring every few days. Hahah!

So now onto trying new things after my two week slow reduction off Topamax. Never stop any drug all at once or without notifying your doctor.

(I received no incentives and I'm in no way affiliated with any of the links on this blog.) 

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.) 

All the feels

Oooooh chronic illness. You really know how to kick a girl in the butt, don't you? It has been a while since I posted because... you know... life and spoon sucking and stuff. Working 40hrs a week while struggling with my body pretty much takes 100% of my efforts daily. I'm constantly scared that I won't be able to work in the near future, but I tell myself that the only thing that would make that happen is if my voice were to be affected. Pretty much everything else I can work around. For instance, I just asked my employer for a voice to text software that will work with the programs we use.

I saw this taped to a bookshelf at a thrift store. I love little surprises like this!

I'm meeting my new neurologist this Tuesday and my husband can't come with me. I have to be a big, brave dog all on my own. I've got this! The new person is supposed to specialize in Metabolic Myopathy, so I'm hopeful. My old neurologist will also be there, so that will be helpful to have that support too.

Curious about my current symptoms? I know you are!!!

June 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Muscle cramps and spasms randomly everywhere
• Loss of muscle strength and energy through the day
• Feet go into tip toe frequently when seated
• Right lower eyelid spasm/twitch frequently
• Pain in arches of feet unrelated to activity
• Ptosis of both eyelids (right is worse)
• Increase in asthma sx (4 nebulizer treatments this year and 3 rounds of Prednisone)
• Occasional dry mouth
• Occasional choking
• Occasional headaches (from the COQ10?)
• Occasional constipation unrelated to food
• Occasional delay of urination (muscles won't relax)

Right now I'm on 2,800mg of COQ10 to try and help my Metabolic Myopathy (caused by a gene mutation.) Reading other people's experiences I feel fortunate to have been diagnosed so quickly. It didn't feel quick to me at the time, but for some people it takes years and years. 

Currently I'm trying to find other people with a COQ6 mutation who have Metabolic Myopathy. I've found one who I think does, but they're in India and English is a bit hard for them. I found another 5 who have very similar conditions that come super close and include COQ10 Deficiency. Of those five all are in a wheelchair at least as much as I am, if not more. Some have a breathing tube and feeding tube. That's a bit scary.

I'm glad I live in a time where I can hop online and get information and try to find other people on such a rare condition. In the meantime I have my husband and my family to share my feelings with and that's also very helpful. 

Current Symptoms - July

Back at the end of May I shared this post about how I keep a "running tab" of my current symptoms to share with all my medical providers. I've only been met with positivity when I come prepared and organized like this. That said, I do try and keep it to a 1 page sheet. That's becoming more challenging. 

I have an appointment with my primary care doctor next Friday and I'm seeing my new rheumatologist the Friday after that. And.... Huge news... My insurance referral came through yesterday for my spinal tap. That's coming up next Monday. Hopefully they'll have the results hot off the presses for my new rheumatologist! YAY! Things are starting to come together. That also gives me a full week to recover from the procedure before I start my new job. 

With these important appointments in mind I did a little tweaking to my list. Previously I had two categories on a Word document. 
1) What I've Tried 
2) Current Symptoms 

Now I broke that into three categories. 
1) What I've Tried 
2) Currently Using 
3) Current Symptoms 

All of these sections have grown since May. Here are my current symptoms:

Current Symptoms:

• Reduced overall muscle strength, especially right side of body
• General Fatigue (feel exhausted most of the time, especially after activity)
• Muscle shaking (arms & legs) after short exertion (like 15 minutes of light gardening) Stops with rest after about an hour
• Inability to have an orgasm (muscles can’t sustain contraction for period of time.)
• Joint pain in feet (especially right foot, ankle and 4 smaller toes. Right ankle & toe swelling.), in both hands (especially right hand & fingers. Hands feel hot) lower back, mid back, neck (that sometimes wakes me during the night), both knees, right hip and right shoulder pain
• Muscle spasms (thighs, calves, arms and stomach mostly)
• Dizziness (especially with movement)
• Peripheral neuropathy symptoms (especially in legs, arms and lips) numbness, tingling, feels like nerves vibrating or full of bees (currently taking Lyrica for this.)
• Both hands swollen in the morning (Sleeping in compression gloves helps.)
• Feeling of fullness, pressure in right ear (ETD)
• Painful body joint gelling in the morning and after sitting
• Forearm burn and itching (nerve itch? Ibuprofen helps)
• Increase temperature sensitivity in forearms, hands, shins & feet
• Frequent urination, especially at night (0-8 x per night. Improved temporarily with Lyrica.)
• Dry mouth, especially at night
• Ulcers on tongue & roof of mouth (Responds to salt water rinses)
• Sore throat off and on (like I feel like I’m getting sick, but I don’t)
• Cracking of joints (neck, hands, feet, back, knees)
• Occasional “brain fog” (like I have the flu)
• Toes on right foot appear to be “drifting” away from big toe & swollen
• Ankle swelling on right foot after minor activity

My jacked up feet after 15 minutes of light gardening.
My toes and right ankle puffed right up.
Yes, it hurt.

The spinal tap will hopefully help sort out which of these is being caused by the RA and which (if any) are from something else. That's why it's so important. It is possible that all of this is from RA. Or it could be comorbid with MS, ALS, or something else completely. 

My muscle weakness is still progressing. It's even affecting me sexually now, which is a huge issue. I'm hopeful that my new rheumatologist can find a drug that will help and I can regain some strength and mobility.

In the meantime, Meg will be my new "adventure buddy" and I'll just do what I can, for as long as I can.

Current Symptoms

Before each doctors appointment I make a list of my current symptoms. For a new specialist I also include a basic timeline and break the symptoms up into "chronic or occasional." I have an appointment with my primary care doctor and just finished a list for him. This time I'm including something new. A list of things that I've tried to help ease the pain and calm inflammation on my own. I'm doing this because sometimes I feel like doctors think patients aren't proactive or are just looking for a quick fix. I want to really hammer home how long I've had this, how severely it affects me and that I'm not just waiting for someone else to "fix" it for me. Also so we don't waste time talking about/suggesting things I've already tried.

Tried: (for pain & inflammation)

Plaquenil (400mg – stopped taking from side effects)

Gabapentin (stopped taking from side effects)

800mg Ibuprofen 2x a day

1,300 mg Acetaminophen 2x a day

Salonpas (topical pain patch):

            Camphor 3.1% (Topical analgesic)

            Menthol 6.0% (Topical analgesic)

            Methyl salicylate 10.0% (Topical analgesic)

CBD topical stick

Charlotte’s Webb CBD supplement (no THC)

TENS machine

Acupuncture

Supplements (Borage, magnesium B-12, E, fish oil)

Ben Gay and all the other topical ointments for arthritis & joint pain.

Light exercise/stretching

Diet changes

            (cut out gluten, sugar, dairy, etc.
            *Improvement with no gluten since 12/2017)

Current Symptoms:

·      Joint pain in feet (especially right foot, ankle and 4 smaller toes. Right ankle & toe swelling.)

·      Joint pain in both hands (especially right hand & fingers. Hands feel hot)

·      Joint pain in lower back

·      Joint pain in upper neck

·      Right shoulder pain

·      Pain in back, shoulder, hands and neck that wakes me up in the night

·      Dizziness (especially in the morning)

·      Feeling of fullness, pressure in right ear

·      Body joint gelling in the morning and after sitting

·      Frequent urination, especially at night.

·      Dry mouth, especially at night.

·      Sore throat off and on (like I feel like I’m getting sick, but I don’t)

·      Fatigue (feel exhausted most of the time, especially after activity)

·      Easy muscle fatigue in arms, legs and bottoms of feet (the front pads) from minor activity (like bathing or walking across a parking lot.)

·      Peripheral neuropathy symptoms (especially in legs, arms and lips)

·      Both hands swollen in the morning. Sleeping in compression gloves helps.

·      Pain in both knees, especially after activity (knees feel hot)

·      Cracking of joints (neck, right hand, right foot, both knees)

Have you ever had that conversation with someone? Even your doctor? "Have you tried..." "YES!!! I've tried everything!!!" That's what I'm trying to avoid.

I don't think any of my symptoms are unique. In fact I think the majority would fall into either "neuropathy" or "rheumatoid arthritis" (or as my doctor says, "rheumatoid disease.") I'm not a special snowflake in the land of symptoms. So why each neurologist and rheumatologist stammers that I'm so "A-Typical" is a big mystery to me.

I'm hoping that my appointment Thursday will bring a fresh referral to a NEW rheumatologist and suggestion for addressing the chronic inflammation (because the 800mg Ibuprofen is doing zilch.)

Any Questions?

"Do you have any questions?"
YES! 

What's wrong with me and how can we fix it?