How Could I Forget??

Oh my gosh, I totally forgot to blog this. Wow.

When I arrived at the MS dinner the other night, I went straight for the drug reps. Why not get more information?

First up was Pfizer, which was advertising the injectable disease-modifying drug (DMD) Rebif. The nurse asked what I am on--nothing. I told her that I am just treating symptoms right now. She asked if my neuro feels that I do not need DMDs. Um, no. I told her that is not it; my neuro is a little busy since she just switched practices*. And that she is maybe a little more focused on herself than on patients**. I said this sort of ruefully, "oh well." I quickly added that I will see a neurologist at [famous hospital] MS Center next week. She asked who and then said he is good.

Then she asked who my current neuro is. I told her it is Dr. Gabby.

Her eyes narrowed, and her mouth twisted in annoyance. Or hatred? She physically took a step back. She said that it is good that I am switching. She said that she has worked with many patients who had Dr. Gabby and... then she bit her tongue.

This is the third medical professional who has had something bad to say about Dr. Gabby. I am so glad I made the decision to switch, although I ended up with a bad neuro again in Dr. Ronnie. But hopefully the new guy will be good. I just have to keep trying.


*Busy with her new, money-generating patients at her husband's pain management clinic.

**Referring to her weekly Questcor-funded lectures shilling Acthar... and pushing me to go to her lectures after I have just gotten through expressing my frustration that I am too sick to go anywhere or do anything. I remember calling her from the ER and having her tell me I would really enjoy her lecture that day. I AM IN THE ER WITH A CSF LEAK, YOU IDIOT. Um, no, I think I will not be able to attend your lecture.

Those MS People Kind of Freaked Me Out

So the MS dinner last night... Man, those people are bad off. They were stumbling all over the place. I was chatting with a deaf woman, and she asked me my name and if I'm hearing at least three times. I finally wrote it down for her. Thinking about those people scares me. When will I be like them?

Nevertheless, I had a good day.

Sensory:

-Pins and needles: 1

-Tingles: 1, left thumb, arm near elbow

-Paresthesias (burning): 2, feet and also quads. It's different than sore muscles--really feels like burning, like in my feet. I don't know what to think. I also had it yesterday or the day before. I tend to second guess myself and not record symptoms the first time they happen.

-Paresthesias (other): 2, tiny electric shocks in my left sciatic nerve behind my thigh

-Numbness: 2, the usual. Plus I feel like the lateral half of my right pinky might be on its way out.

-Vision: 1, no focusing problems today, just a few floaters

-Nerve pain: 1

Motor:

-Gait: 2

-Sore muscles: 3, calves, quads--worse when I wake up (very stiff) and in the evening (very tired).

-Fine motor: 2

-Weak muscles: 4, still having trouble with stairs, walking through a parking lot, etc.

-Spasticity: 3, both areas but more calves today, esp. right

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 0

-Confusion: 2

General:

-Fatigue: 4

-Balance: 2--I think it is better at night. I did not need to hold onto the walls when I got up to go to the bathroom last night.

-Sleep: 4, 7 hours--6 in a row then another half hour... awake.. another half hour.. yeah, I suck. But I really took it easy this morning and rested a lot.

-Bladder: 2

I got emotional today when a friend said that I should not feel pressured to go with her to a concert next Saturday. Because I definitely did feel like I needed to say yes! When she said that I did not, I was so relieved (or something) that I cried a little.

And six more days to the MS Center appointment. I cannot wait.

MS Dinner and Panel Q & A

Tonight I went with my sister and two friends to an MS dinner, which featured an expert panel willing to answer questions. These were the notes I took:

Expert 1
-T-cell vaccine studies have not been positive so far.
-One question is why eye problems exist when the eye has no myelin.
-T-cells can react against myelin, but the question is whether it is myelin basic protein only or another myelin protein.
-So what causes the T-cells to damage the eyes? Are they targeting the nerve cells themselves?
-Stem cells from bone marrow can help repair myelin in the brain.
-Treatment response (DMDs) depends on "what perfect storm created your MS."
-Autoimmune diseases are commonly triggered by antigens--proteins in blood.
-Few people have been able to replicate Zamboni's CCSVI work.
-Please do not have surgical procedures until we see data that the CCSVI theory is true. The risks are too great for these surgeries. A few people have died. [My rebuttal would be that people have died from the MS drugs as well.]
-Autoimmune thyroid disease is more common in people with MS.

Expert 2
-Relapsing-remitting MS is all about inflammation. Primary progressive MS obviously has no relapses, and inflammation is minimal--different than RRMS. PPMS usually starts with lower limb stiffness, difficulty walking. Gilenya is being tested for people with PPMS at Johns Hopkins. Tysabri is being trialed for people with SPMS at UMD.
-Zamboni's study found that 100% of people with MS had CCSVI. Really? Every single person?
-Encourage you not to pursue it--dangerous.

Expert 3
-Epstein-Barr virus increases the risk of having MS.
-The VA is looking at military personnel, especially those on ships, for the effects of lack of sunlight exposure.
-Nortriptyline is a medication that modulates pain the CNS. It changes the ability of the brain to receive pain.
-The National MS Society has funded CCSVI research. There is no standardized approach to the research, so it has been hard to replicate the CCSVI results.
-The Buffalo CCSVI study was done by a Zamboni trainee.
-The is not a single antigen responsible for MS. Need to see it as a global response (something about antigen spread) and modulate that.

And today's data....
Sensory:

-Pins and needles: 1

-Tingles: 1, left thumb

-Paresthesias (burning): 3, feet

-Paresthesias (other): 2, prickles in left sciatic nerve

-Numbness: 2, the usual

-Vision: 2, more floaters today I think

-Nerve pain: 2--but it always gets much worse in the evening when I'm going to bed

Motor:

-Gait: 4, it was not terrible in the morning but bad by the evening

-Sore muscles: 4, calves, quads

-Fine motor: 2

-Weak muscles: 4

-Spasticity: 3, both calves and quads

Cognitive:

-Language processing: 2, got annoyed with certain speakers

-Memory: 3

-Attention: 0

-Confusion: 3

General:

-Fatigue: 3 most of the day but 6 in evening

-Balance: 4

-Sleep: 6, I got six hours of sleep AGAIN. This time because back pain from my period woke me up. I hate when I starts in the middle of the night, because I can't get ahead of the pain with ibuprofen. Anyway, I ended up not being able to sleep from pain and then just not being able to sleep. Now I can't wait to go to bed!

-Bladder: 2