Sunday, December 15, 2019

What Next?

The plan was/is, to begin the Gilenya after breastfeeding for 3 months. Statistics state that women relapse harder 3 weeks postpartum. That's around Dec 9. Sorta aligns with the eye appointment that I rescheduled. So, since I rescheduled that appointment I have to wait for that to happen, which is Jan 6. 

Wish me luck that I don't relapse. 

Thursday, December 5, 2019

Back to Mayo - Eye Appointment

Well, I was supposed to go on December 6 to see the Ophthalmologist but I needed to travel for work so I've postponed that appointment for a few weeks. I have this appointment in order to start the medication. Remember from the last time, taking the Gilenya could cause eye problems so yeah. 

Saturday, November 2, 2019

Results Are In

I think i'm going to like this. The physician/staff are quick with providing results of tests/visits on their patient portal. 

I've the blood work results as well as the results from my MRI. In short (or long):


CERVICAL SPINE FINDINGS:  Study is motion degraded. However there are faint
patchy areas of abnormal hyperintense T2 signal in the cervical cord at C2 and
C4. After the administration of IV contrast, there is no abnormal cord
enhancement.

The alignment is normal. There is straightening of the normal lordosis. There is
no significant marrow replacing lesion or evidence of an acute fracture. The
visualized posterior fossa is unremarkable. There is partial visualization of
mucosal thickening in the right posterior nasal cavity extending into the
posterior nasopharynx. Significant degenerative changes are detailed below.

At C5-C6, there is a new, moderately-sized central disc protrusion which effaces
the ventral subarachnoid space and results in mild canal stenosis and flattening
of the ventral cord. There is no significant foraminal narrowing.

At C6-7, there is a posterior disc bulge eccentric to the right with mild
subarticular recess stenosis and mild right neural foraminal narrowing. 

THORACIC SPINE FINDINGS: The alignment is normal. There is slight S-shaped
scoliosis of the thoracic spine. There is no significant marrow replacing lesion
or evidence of an acute fracture. There is no abnormal cord signal.

There are mild scattered degenerative changes. However there is moderate left
neural foraminal narrowing at T11-12 with facet arthropathy and ligamentum
flavum hypertrophy. There is also mild spinal canal stenosis identified. After
the administration of IV contrast, there is no abnormal enhancement. 

Subcentimeter T2 hyperintensity noted in the liver likely represents a small
cyst. Small approximately 3.5 cm likely lipoma noted in the subcutaneous soft
tissues at the T9-10 level in the left paramidline region.

IMPRESSION:

Limited motion degraded exam demonstrates faint abnormal T2 signal in the
cervical cord at C2 and C4 without associated enhancement.

No abnormal cord signal in the thoracic spine.

Degenerative changes especially at C5-6 and T11-12, as described.




Tuesday, October 29, 2019

Back to Mayo - First MRI

So, the thing with Mayo is that they prefer their own to perform the work. And by that, I mean, lab work, eye appointments, MRI, etc. They prefer that you come there to get them done. Soooo, we're back. This time we're staying over night. I had multiple appointments scheduled and the last being a MRI of my Brain, Cervical Spine and Thoracic Spine with and without contrast. It didn't start until 7pm and I was in there for about 2 hours. 

We're staying at the Sawgrass Marriott Golf Resort & Spa. They actually have a Courtyard Marriott on the campus BUT man it's expensive. Ridiculous the amount they charge per night. For these families that come here to stay with their loved one (or even the patient themselves) that are here for procedures, etc, it really makes no sense the amount you have to pay. A basic search was like $259/night. [Compared to a Courtyard elsewhere that might be $150 or less). 

Anyhoo, I made it through the MRI and now we're heading back to the hotel to relax, have dinner and head home tomorrow. 


Tuesday, October 22, 2019

Mayo - First Visit

Had my first visit at Mayo today. It was a really good visit. Worth the drive to Jacksonville! As soon as I got there they took the images that I'd provided to them (previous MRIs) and by the time I was seeing the doctor, she had them and could show them to me. We looked, side by side at both my spine and brain scans to compare progression. 

She did a 'physical therapy' type exam to text my grip, balance, coordination, etc. 

The doctor talked about the different medication options available to me. We also talked about, and agreed, on restarting Gilenya; the medication I'd previously been on. So she's ordering that! 

We'll be scheduling an MRI. I'd hoped that they could get that scheduled before I leave here (like today or tomorrow), blood work and an eye appointment; but no. I went to do blood work before I left but the MRI is scheduled for next week, so I'll be coming back. 

Their facility is pretty nice too. This might be a promising decision. 


The Mangurian Building

Monday, September 9, 2019

WeHadABabyItsABoy

And he's perfect, healthy and whole. No effects from the few weeks of medication I was on after becoming pregnant.

Wednesday, June 26, 2019

Hand Therapy

It's been going good. There's something about those muscles (by my elbow) that don't feel right. But this helps.

Saturday, June 1, 2019

No Medication During Pregnancy

Remember when I said the cure to MS is pregnancy and that we pretty much has a Hold My Beer moment because I had the worst flare I'd ever had? Well yeah. I've decided NOT to take any medication during this pregnancy. Never know what impacts they could have and I don't want to take any chances.

I was supposed to start taking Copaxone, an injection. They event sent the 'injector' to me but eh. Plus, it was a generic brand that hadn't officially been approved and the nurse that had previously reached out to me couldn't do it because it was generic. 

Tuesday, May 21, 2019

Adding To My Care Team

I went to see a new neurologist today. I was searching for that ONE specialist in Tallahassee that knows everything about Multiple Sclerosis. I'm pretty convinced that doesn't exist. Anyway, while i was in the hospital a PA from this doctor's office visited me a few times. We clicked. I thought going here would be another step in the right direction. Frankly, the MS Center in New Jersey spoiled me. 

Anyway, we talked. He was upfront and honest that their office wasn't the facility for me. They deal with pain management. I wasn't in pain. The pipe dream I was sold by the PA vanished before my eyes. It was a good visit though. We talked about me going to see the specialists at Mayo Clinic in Jacksonville. I'd thought about it before and this appointment solidified that. 

Tuesday, May 14, 2019

Wrist Splints

My hands are coming back together. but they hurt. well, more so my wrists. The neurologist seems to think I may also have carpal tunnel.The massage therapists noted the tension in my wrist and arm (the tomahawk chop muscle). 



Monday, May 13, 2019

Nerve Tests and Copaxone

Happy Monday. Here's where we are with things. Sensation in my legs are pretty much back. Still some areas lacking but nothing i can "feel". Nerve Conduction today showed some nerve lacking but again not major. Concern now are my hands/arms. But can't do that test until May 28. I have an appt for wrist splints tomorrow.

Pregnancy wise. Went to the Maternal Fetal Medicine (High Risk) Doctor on Friday. Downside to THAT appointment, she doesn't "advise" travel during the remainder of this pregnancy (air pressures, current flair, etc). While she's not saying don't ever go, she suggested or recommended that if there are other options to seek them out. Work. Puerto Rico. Remember?!

The neurologist is working with the OB and MFM on the MS medication determination (injection of Copaxone). MFM seemed hesitant. I'll do some research. Eeeek @ Injections. But apparently it's fetus friendly. 

Friday, May 10, 2019

Moving Right Along

The OT and Water Aerobics has been wonderful.  I've regained most of the sensation in my body.  There's still a loss of sensation on my right side and hands. I can move them though.  I've tried driving. Still somewhat cautious as my grip and feeling isn't quite there.  Baby update... I'm 21 weeks, due 9/17. And it's a boooooy! 

Thursday, April 25, 2019

Reading The MRI

Just left the primary care physician and he gave me the update on the MRI that I had while in the hospital. So there are some additional lesions now. Previously I knew they were between C2-C4 and the largest between C5-C6. Now it looks like the most pronounced are still at C5-C6 and also C6-C7. There is something at T2 as well impacting C2 C3 C4 & C5. Take a look at a spinal cord picture for a better understanding of those nerve functions. 
There also appears to be some noted plaques on the right posterial parietal lobe and bilateral parietal subcortical regions of the brain.
 He agrees that both occupational and physical therapy should be happening.


Tuesday, April 23, 2019

Starting over

I'm home now. I came on on last Friday, 19th. Being home is different. The sensations are coming back. But my hands are not together. I left there with a plan though. I will start Physical Therapy (Hand therapy). I  plan to begin Water Aerobics. Yoga. 

I have to be driven around. Eating is a chore. Putting on clothes. Something's gotta give. I've got to get myself together. 

Sunday, April 21, 2019

Drop The Hammer

Being home is a struggle.  Great being here but a struggle nonetheless.  So much more to do and touch and yet so much i can't just DO. not with ease.  It's almost scary because i want to be able to do for myself but cant. Had to get help yesterday with #BabyBoyMcNear trying to climb around awkwardly.  I couldn't hold him nor did i have the ability to maneuver myself to get him. 

My hands feel like Thor's hammer. I'm noticing more how little feeling they have as they've slid from under me, twice. 

Wednesday, April 17, 2019

What Happened To My Hands

The steroids seem to be working. They're doing something. The sensation of my legs appear to be coming back. My blood pressure has been high throughout. I've been having headaches. I'm uncomfortable. My back aches. I'm bloated. Pretty miserable lol. And this, this morning my hands stopped working. I lost the mobility in my hands. MY HANDS!!! I guess you can't really tell from the picture but they're 'stuck' like this. Am I stressed? Is it the steroids? Are they NOT working? What's happening. 

This morning, I cried like a baby. The thought that things a really aren't getting better. that this could be it. I was not happy. 

Friday, April 12, 2019

She's Being Admitted

Today's Friday. I've been admitted to the hospital and beginning my rounds of steroids. #FallRisk #CallDontFall


I'll be doing routine lab work, have an MRI and monitored throughout the process. 

Thursday, April 11, 2019

Doctor Doctor

I've wrapped up my appointments. I've seen my Primary Care Physician, Obstetrician, Bloodwork and Neurologist. We have a plan in place to begin an inpatient steroid infusion. I had options. I could do outpatient (go to an infusion center somewhere) or inpatient (hospital). While I understand what they're saying, I don't understand why I have the option. With the amount of steroids I'm about to receive and being pregnant, it would make sense that I'm hospitalized. It makes sense to me. So, tomorrow morning, I'll be going to Capital Regional Medical Center to begin asteroid treatment. 

Wednesday, April 10, 2019

T.E.N.S. Machine

I'm doing everything I can to reduce stress. My dad brought me a T.E.N.S. machine that I can put on to rub, knead, push, acupuncture, etc. They're giving me random massages. I have lavender and peppermint in the room. Whatever I can. I'm still in the hospital doing the steroids. I'll be here for a few more days. After that, it's on me. 

Tuesday, April 9, 2019

No Sensation

Well, happy Tuesday. First of all, yes I've scheduled my appointments with my Neurologist and Primary Care Physician. The lack of sensation has moved up to my waist. The bottom of my feet feel like i'm walking on wood. Unstable to say the least. My arms have some loss of sensation but not as much as the rest of my body. I've had headaches all week. My body feels REALLY tight around my waist. 

And guess what? *drumroll* We're having another baby! Remember the last time we had this conversation? Well, the plus about it is, I haven't been on any medication to cause an issue. The bad part is, I'm in the MIDDLE OF A MS FLARE. I thought this couldn't happen. 

Monday, April 8, 2019

Losing Sensation

I was scheduled to leave to head back to Puerto Rico today. But I started feeling a little weird after Saturday's MS Walk. I started losing sensation in my lower extremities. My legs didn't feel right, to touch. So I decided to go to the Emergency Room. The last time I opted to fly back to work, April 2014, I ended being diagnosed with MS. So I figured something was 'wrong.'

Unfortunately my visit to the ER didn't give me much. My potassium and magnesium was low so I received a refresher and was sent on my way. But remember, I've not been on any medication for a couple of months now. I know I know! 

Anyway, I'm not going back to work just yet. I need to make an appointment with my neurologist and get to the bottom of this. I'm now thinking back to my last MRI, where my lesions are and what areas of the body they impact. 

  

Saturday, April 6, 2019

Walk MS 2019 - Tallahassee

This year's walk has been sort of rushed. I didn't put as much work into making it come to. It DID but it wasn't as together as I'd liked. I was tired. Drained. Stressed. But we made it through. It was actually sorta dreary. I'd gotten in late the night before, from Puerto Rico. Oh yeah, did I mention I'd working in PR now?!  No shirts though. Everyone was to wear their favorite sports team. 

I felt good. I got my laps in! 

Theme: Play To Win

#TeamTasha #OnMyNerves 



Monday, March 4, 2019

Neurology - San Juan

As I mentioned before, I had the opportunity to network with some people in San Juan that allowed me to get in to see a neurologist on the Island. I'd been in Puerto Rico, almost permanently, since January and need to find a doctor to coordinate my first dose (restart) of the Gilenya. I got in to see Dr. Chinea. It was a great visit. We discussed my symptoms and issues. He talked to me about the work/research (MS in people of color) he'd been doing with the University of Miami and looked forward to seeing me again. 

Saturday, March 2, 2019

MS Walk 2019 - San Juan, PR

I like participating in the walks in different cities/states. My coworkers joined me this morning in San Juan, Puerto Rico. The walk here is different than in the states. They have ONE BIG walk on the island. Everyone from all over comes here with the teams. It was really nice to see. I was also able to network with representatives from Novartis and the The Fundación de Esclerosis Múltiple de Puerto Rico (MS Foundation) to see a doctor on the island. 

#TeamTasha #OnMyNerves




Thursday, January 31, 2019

Co-Payment Renewed | Let's Go

... now send me my medication. :-) 

I'm reaching out to a local (stateside) Neurologist to set up my first dose observation and you know what they told me (before doing research, apparently), "I didn't know you had to do that!" So what you're telling me is, you have no idea about the medications that MS patients take. You don't have knowledge of other medications and presumably stick to the few that you do have knowledge of.  That's discouraging. How am I supposed to feel comfortable talking to my doctor about something that concerns my health and you (or your staff) don't do the due diligence to perform the 'procedure'? 

Ok, so now what? 

Thursday, January 10, 2019

New Year, New Prescription

As the new year is upon us, it's time for me to re-up my prescription,payment for the Gilenya. Somewhat unbeknownst to me. I didn't think about it. So I wasn't prepared for them to tell them they couldn't send out another shipment because my Co-Payment, as a part of the GILENYA Co‐pay Program, had expired. So here I am, trying to get that taken care of and hopes to do so before too long. Since, if I miss two weeks I have to start over. Or something like that.