MS after 8 years.

I first started noticing strange symptoms in May of 2011…

I was walking up stairs at work and tripped, I chalked it up to not lifting my foot high enough.

I was then walking along and tripped on a flat surface, I chalked it up to flimsy no support slip on shoes.

I dropped a plastic cup I was holding in my left hand, I chalked it up having an injury in that wrist from years ago and it was just weak.

I had numbness and tingles in my legs, I chalked it up to maybe I pinched a nerve.

I figured I should go see my general practitioner and have her check all the items I had been experiencing. She said she didn’t know for sure but said it could be MS and was referring me to the Mayo Clinic for tests.

I had no idea what Multiple Sclerosis (MS) was and some days I still don’t understand it. The Mayo Clinic definition is:

“Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system).

In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves.”

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

That timeframe was such a blur. I had more symptoms that occurred, the numbness and tingling moved up to the core of my body and arms. I had and still have some balance issues. I know I did bloodwork, was referred to a neurologist and had an MRI done.

I was officially diagnosed with Multiple Sclerosis on August 31, 2011.

I still have times where I have numbness and tingling in my left leg and sometimes hands. My balance issues are still there when I’m tired which is often, I’ll start to lose my balance or walk into a wall.

I have bladder issues and have been doing biofeedback – Percutaneous tibial nerve stimulation (PTNS). I haven’t seen any changes as of yet but the nurse did say it could take up to 6 sessions before seeing improvements. I’m hoping that I will see some soon so I don’t have to pee every hour.

I’m hopeful that I will see some changes soon as we have a big trip planned in October to visit New York, Paris, London and family in North Carolina.

August always felt like a bummer month with things happening but someone told me recently August is enlightening. ๐Ÿ’–

Mammogram and ultrasound update…

I went in to have my annual wellness exam last month. During the breast exam, she found a lump in my right breast close to the center of my chest. ๐Ÿฅบ

I was already due for a mammogram this year but this was a bilateral diagnostic exam. The pancake maker was uncomfortable for sure. ๐Ÿฅž ๐Ÿ˜ฃ

I then had an ultrasound to check for any abnormalities. I had to wait for a Dr. to come in to do another ultrasound and speak to me about the results. โฐ

She said she didn’t see anything on the mammogram or the ultrasound. All is healthy just need to go back next year. ๐Ÿ˜Œ

Again, please do your own exams often and get checked once a year to make sure you’re in good health. ๐Ÿ’–

The Annual Womenโ€™s Wellness exam that I dreaded to have…

First off, I go every year to get my exam. It’s always not an appointment to look forward to. I mean how fun is it to sit there half neeked getting poked and prodded in your lady bits and whoohaa. Especially since this was a new Certified Nurse Midwife I was meeting. My favorite Nurse Practitioner who I’ve seen for about 8 years decided to retire in Tennessee! I don’t blame her, Tennessee is beautiful and wanting to be closer to grand babies totally wins! ๐Ÿ‘ถ๐Ÿป

This appointment was frustrating to me, I got there early, checked in and gave them my sample. I waited a little while for the nurse to call me back to get all my vitals – BP 120/80! Woot, woot! I then waited almost 30 minutes sitting there undressed except my sock with the gown turned to be open towards the front and paper covering my whoohaa before she came in. I was there a full hour before I was even seen! ๐Ÿ™„

We chatted a bit, told her about my MS, that I wanted to get my vitamins, minerals and hormones checked. I also wanted to see if they were causing my menstrual migraines or if maybe a lower dosage for birth control pills would be recommended. We decided on just continuing on my regular pills but skipping my periods to see how I did. ๐Ÿค”

Next was to check of my breathing, thyroid gland and then the breast exam was next.. She found a lump in my right breast close to the center of my chest. My heart sank a little.. She made me feel it and I said I don’t think I’ve felt that before. ๐Ÿฅบ

I was already due for a mammogram but now it’s supposed to be a diagnostic with ultrasound one that had already been set up for next month. She was explaining it could be the lymph node system as it does run near your breasts into your armpits. I feel kinda numb but hopefully it’s nothing. Please, please do your own exams often and get checked once a year to make sure you’re in good health. ๐Ÿ’–

MS Journey update -2nd urologist test done..

Let’s just start off with, it was an awkward appointment for sure.

This was for the Urodynamic Testing (UDS) – testing the function for the bladder. I was supposed to come with a FULL bladder (drink about 3 – 12 ounce glasses). I got there early, already had to pee and knew I could not hold it. ๐Ÿ˜ฉ

After about 20-25 minutes the technician called me back and took me to the exam room. I had to undress from the waist down. She told me all that was going to happen. She stepped out and on her way she asked me to sit in this weird chair and pee into a bucket to test the flow. ๐Ÿ˜ณ

The setup…

The chair is then raised up so she can insert a catheter in my whoohaa (to fill the bladder) and in my butt to measure the rectum pressure when you pee. Also, sensors are taped to your leg and butt. I never knew your butt controlled the bladder pressure. ๐Ÿ˜

Oh and she strapped this power pack to my leg that goes to the catheters to measure stuff so it’s recording on the computer next to the chair. ๐Ÿ–ฅ

She started to fill my bladder with water. I had to tell her when I felt the urge, when I was looking for a bathroom and when I’d be knocking on the door to tell people to get out of the bathroom so I could go. I also had to cough in between filling and push like I was trying to have a bowel movement to see if I had leakage. Thank gosh I didn’t pooo everywhere! ๐Ÿ’ฉ

I guess I have bladder spasms that trick me to think I have to go, they subside some and then I feel like I really have to go. I think she said she gave me 400ccs but I really don’t remember. I think the average bladder can hold 13-20 fluid oz. ๐Ÿ’ฆ

She unhooked the sensors and took out the butt catheter and unstuck the sensors from my leg and but. I then had to empty my bladder by peeing into the bucket again to measure how much I released. I am not sure how much I peed out as some missed the bucket. ๐Ÿ˜ฌ

She came back in and had to empty my bladder with this syringe thing and records what was left over in my bladder. ๐Ÿ“ˆ๐Ÿ“‰

She gave me this AZO cranberry caplets to help with possibly burning with peeing today. She said to drink lots of water to flush kidneys and bladder. So far, I’ve had minimal pain and only a little blood which is to be expected. ๐Ÿšฝ

All in all the appointment was uncomfortable but pretty quick. I get results next week and grateful that we should have plan on moving forward. ๐Ÿ‘๐Ÿผ

I’m full of gratitude for my support system that I have in my life whether they are just here for me by posting positive thoughts or with me personally day to day.

I thank my lovey who was at work but texting before telling me I’d be okay and after saying now a plan can be set up. ๐Ÿ’–

My sissy who lightened the catheter in my butt tracking the pressure used by jokingly saying you’re butthole has a record now! ๐Ÿ˜‚

MS Journey update – 1 urologist test down and 1 to go..

My Cystoscopy appointment was today – remember the small camera similar to a catheter that is inserted through the urethra and into the bladder to inspect for any abnormalities?

When I finally went in with the nurse, she instructed me to undress from the waist down and put a cover over myself. Ok, it’s like a lady exam. She comes back in to clean my area and put numbing gel on. Next the camera goes in.. The Dr asked if I was nervous, uh yeah, Iโ€™ve never done anything like this. ๐Ÿ˜ฌ I kept thinking of the last song that randomly played on the radio right before I walked in – Eye of the Tiger! ๐Ÿฏ I totally laughed but felt pumped and like I could handle this. It’s an uncomfortable feeling for sure and not a new life experience I’d like to have but he said all was looking healthy! ๐Ÿ˜€

The Office was soo busy today. I waited longer for the Dr than the actual test to be completed. I had to go potty 3 times within the hour or so I was there so I’m guessing I’ll have a full bladder for next weeks appointment. ๐Ÿ’ฆ

The warning of things to expect after – blood in urine, burning with urination and urgency to urinate. โš ๏ธ

I had to go potty when I got home – Hello stingy uncomfortable peeing and some blood in it.  I thought it was the iodine wipe they used to disinfect my whoooha. I already have to pee every hour sometimes twice an hour so the thought of being in pain every time does not sound fun. Nope, it’s been blood with a holy hell burning sensations alllll day long and I’m ready for it to stop now. ๐Ÿ˜ฉ

Iโ€™m not looking forward to the next test that could last up to an hour but I’m hoping it goes smoothly. I have to have a full bladder and urgent urge to urinate, and hope these same issues don’t occur as much after that test. ๐Ÿคž๐Ÿป

An update on the continuous MS journey..

Welp, my Urologist appointment went well. The Dr seems so nice and funny. He thought he was meeting a dude name Clark because they forgot a comma between my first and last name. He went to shake my Lovey’s hand and he’s like nope this appointment is for her but nice to meet you! We talked about possible medications and I asked for an natural options. He said there is a natural remedy (something to do with a needle inserted into a nerve at your ankle that stimulates the sacral nerves in your low back to help improve or restore bladder functions) for after he gets the test results back on next steps. He really likes my neurologist and said I’ve got one of the best as he only specializes in MS. He asked a bunch of questions – how’s the flow and stream? Do you feel you empty your bladder? Now every time I pee I sit and evaluate it all! Whew, what fun this is.. Speaking of fun, I have 2 awesome sounding procedures scheduled in July. ๐Ÿ˜ฒ

Cystoscopy – small camera similar to a catheter that is inserted through the urethra and into the bladder to inspect for any abnormalities. Things to expect after – blood in urine, burning with urination and urgent to urinate – Uhm that’s why I went so this sounds like a joy! ๐Ÿ™„

Urodynamic Testing (UDS) – testing the function for the bladder. Need to come with a FULL bladder (drink about 3 – 12 ounce glasses) as the first test is to test the flow. After that test bladder is emptied. The next test sounds so much more fun than the camera in my whoooha! Small catheters and sensors are used for the filling of the bladder phase – Cough and valsalva (What?! is this?) to detect any urinary leakage, bladder spasms and pressures. Once the bladder is full again and strong urge to go – empty bladder while the machine is recording urine flow, pressure of bladder and the urge. After that all the equipment used is removed. My worst fear is pissing all over the place or on the tech! Gosh, please don’t let the anxiety poops come on then too! ๐Ÿ˜ฌ

MRI appointment was okay – it’s always fun trying to stay completely still with a jackhammer going off near my head for 45 minutes.

They pretty much lock you into a what I call the Hannibal Lecter mask, give you a call button, an IV for contrast in one arm then roll you into the machine. First test are just to get a start image. Then you lay there for several other longer tests (some are 4-11 minutes, while counting or focusing on your happy place listening to the beep, beeps and sounds of hammers. ๐Ÿค• ๐Ÿ”จ

At one point I felt my left hand go to sleep and kept thinking I hope I don’t need to squeeze this call button due to having to pee! The tech said I did well and was so super still. I said of course I was I didn’t want to have to repeat any of the tests. My neurologist Dr. should have results in about 3-5 days to see if I have any new lesions on my Brian or C spine.

To top this all off I not only have to have a camera, a catheter in my whoooha with all these tests; I’m due for my annual health and wellness appointment with my gynecologist office – my favorite nurse practitioner just moved back to Tennessee so I have a new person who is a Certified Nurse Midwife that I’ll be seeing. Talk about putting it ALL out there for complete strangers all in a 3 week timeframe. ๐Ÿ˜‘

Note to self: Don’t worry about work, you have time off for a reason so you can schedule appointments on different days! ๐Ÿค—

I’m hoping all these urologist tests provide a good look at my future plans for not running like a madwoman to the potty every hour sometimes twice an hour. ๐Ÿ’–

New MS Medication Journey

I reviewed the Tecdidera website, poured over the information received from the nurse at my Neurologist office and some chatting with my always super sweet supportive MS warrior friend, Cat, about when I should take my pill – right after eating or waiting a bit to let food settle. I started my trial of Tecfidera.

The transition will be:

120mg at dinner for 2 weeks.

240mg at dinner for 2 weeks.

After this month; I’ll be ready to take the 240mg twice a day for the normal dosage if all goes well.

06/14/2019 – Night 1 – at 7:10pm – my first 120mg pill of Tecfidera went down the hatch.

At 9:40 pm, as we were getting ready for bed, the flushing and warming of my face, neck, chest and ears started but it’s not too bad so far. It seems to be calming down after about 20-25 minutes. ๐Ÿ˜Š

For no reason at all I was awake at 4:30am and couldn’t get back to sleep. I realized I was so focused on taking the pill and making sure I was okay I forgot to take out my contacts. ๐Ÿ˜ฎ I ended up wearing my glasses a little longer that morning to give my eyes a break. ๐Ÿ‘“

6/15/2019 – Night 2 – at about 7:40pm – Took a 120mg pill of Tecfidera. I don’t know if any flushing occurred because I was asleep pretty quickly after our day of shopping – Costco for gas, Petsmart for Kitty food, over an hour at Home Depot getting a grill for my lovey and other items, we grabbed some lunch then headed back out to Sprouts, after relaxing for a bit we hit up Wal-Mart. This is the most stores I’ve been to in one day for some time now. I’m usually pooped out after 1 or 2 especially in the Arizona summers. ๐Ÿ”ฅ ๐ŸŒž

I woke up again around 4:30 or 4:45am but the reason was to go potty. Of course, I was up for the day after that. It is Father’s Day so I worked on gathering pictures of my daddy and I to post a lovely message to him. ๐Ÿ’™

I ended up feeling really good, it’s usually hit and miss on how I feel the day after my shot. We drove an hour and a half to surprise my parents. Little did we know they were not home, they were already out and about on some errands. I saw my mom had posted the exact Starbucks they were at so we hurried up over to it and surprised them in the parking lot. Ok, we scared a little pee out of them by Lovey jumping in front of theIt still parked car waving his hands and me opening their back door. ๐Ÿ˜‚

I woke up at 2:40am because I had to go potty. After that my brain would not shut off. Random thoughts, hmm I wonder what will happen on that show we were watching the other day. Oh I have a few more hours to sleep at least. I wonder why the sky is blue kinda stuff but none of it mattered. I kept telling my brain to shhh and go back to sleeps. ๐Ÿ˜ด

06/16/2019 – Night 3 – at 7:20pm – took a 120mg pill of Tecfidera. No flushing unless it happened while I was already asleep but then again I feel like I would know due to the warming of my skin.

Finally a decent night of sleep. I’m blaming the full moon on all the restless sleeps. Moon ๐ŸŒ ๐Ÿ˜ฌ

6/17/2019 – Night 4 – at 7:25pm – took a 120mg pill of Tecfidera. Again, no flushing that I know of.

Another decent night of sleep. ๐Ÿ‘๐Ÿผ

06/18/2019 – Night 5 – at 7:30pm took a 120mg pill of Tecfidera. Yet another night of not flushing!

The best night of sleep so far, very close to normal hours and minutes that I usually get.

I’m happy that things are going so well! I haven’t had any GI symptoms – I take a peppermint beadlet from Doterra right after my Tecfidera dose as it’s supposed to help with heartburn or upset stomach. I haven’t had to rush to the potty either for the other end. ๐Ÿ’ฉ

Note to self: just because you feel great and super hero-y doesn’t mean you should go for a walk in 104ยฐ heat even if you were just trying to thaw out from your freezer locker of an office. As I sit here with my lower half of my body throbbing and feeling tingling I’m remind to slow it down and maybe walk inside the office next time. ๐Ÿฅต ๐Ÿฆต ๐Ÿ”ฅ

06/19/2019: Night 6 at – 7:30pm took a 120mg pill of Tecfidera. Still no flushing and another good night of solid sleep. ๐Ÿ‘๐Ÿผ๐Ÿ˜Š

06/20/2019: Night 7 – at 7:40pm took a 120mg pill of Tecfidera. I had dinner a little early and was a little panicked because I was afraid I waited too long after dinner to take my pill. It seemed all was okay with no tummy issues and still no flushing. Another good night of sleep, I feel refreshed and was awake a little bit for the alarm went off this morning. I still had some numbness and tingling in my left hand but my left knee doesn’t feel as much tightness as it has in the past.

I really think my body is getting used to this new routine. I’m hoping for continued success for this transition. I know I feel better and look forward to more freedom of not having to worry about my shot schedule. It may have only been once a week but it was becoming to feel like a burden. Saturday evening would roll around and I had a whole routine I needed to follow. Take a dose of Aleve at least an hour before to help with the side affects of flu like symptoms, take the shot out of the refrigerator at least 30 minutes before, set up your supplies, double check to make sure switching off of injection areas, ice the are for at least 20 minutes, inject the needle into the leg muscle, try not to hit a vein because then it’s a bit of a gusher and will be paint the next day, clean up and put the needle into the sharps container. We couldn’t really go out on a Saturday night and depending on how I felt the next day it was hard to set plans for a Sunday. Some weekends it was a breeze, others I would have a headache for days after, feel extremely fatigued and not be able to do anything. ๐Ÿค• ๐Ÿ’ค

I’m not saying it was the medication but it feels good to not have than worry. If course, things might change once I have my period and may have a headache during that time frame but I’m looking forward to less days of worrying if I will or will not want to do my shot. Plus taking pills on extended vacation will be so much easier since airport security won’t have to take kit the ice packs to make sure they are still frozen and question me as to what Meds I’m taking and what they are for. ๐Ÿ™„

I’m thankful for the new studies, medications that have come out and mostly my support system that I have around me. I’m not my diagnosis, I am just me. I hope others take the time to re-evaluate how they are feeling and be your own advocate by take actions to ensure you are living your best life with the cards we’ve all been dealt. ๐Ÿ’–