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My First Gelenya Follow-up Exam and a Surprise or Three

Updated on April 12, 2012

I started Gilenya before moving to Delaware. Originally my first follow-up appointment was to be three months after I began the DMD (disease modifying drug) but because of a delay caused by my doctors failure to supply their reports to my neurologist in a timely fashion, I was delayed.

Meanwhile we were in the process of leaving New Jersey to retire in Delaware. Once again a series of unexpected delays ended up costing us the home we hoped to purchase. A day before closing, the deal was dead. We had to walk away although it totally broke our hearts to do so.

With all this chaos I did not have the desire to add finding a new neurologist to the mix. To make matters worse, all the stress and strain exhausted me so much that I didn't have the energy to return to New Jersey to visit my old neurologist. I did the unthinkable which was to do nothing at all. I did continue to keep up with others taking the Gilenya pill and was very mindful of the fact that macular edema could be lurking in the background but once I realized the eye problems were lessening I felt confident that I had time to get the condition checked out and ruled out.

Supplier of Gilenya
Supplier of Gilenya | Source

Fast-forward to April, 2012 and a visit to my new neurologist, Doctor "P". I was glad to meet a friendly neurologist who did not make me feel rushed. He made sure I understood all the latest about Gilenya including disclosing the deaths that occurred not very long ago. ( I had read about the deaths and precautions put into place so I was quite comfortable with staying on the drug.)

Naturally he expressed his desire that I follow up on all other procedures and appointments in order to determine how my liver and immune system are holding up since beginning the oral medication. I told him I would now that my life has taken on an appearance of normalcy again.

The Suprises

My first shocker involved my blood pressure. Looking back I know I had no right to be surprised. My blood pressure had been at good levels for so long I hoped it was a "sign" that it could hold its own without the three different prescriptions my general practitioner had prescribed over the course of the past fifteen years. Boy was I wrong! Although I didn't need to be rushed to the emergency room, my blood pressure was high enough to get my attention. Needless to say we will be making appointments for my husband and myself in the next week or so to meet our new family physician.

Sleep Apnea - Surprise #2

As we continued the Q&A, Doctor P asked about any outstanding symptoms. I told him about how much better I am feeling since beginning Gilenya. I explained that I no longer need to take Prozac for energy and that my leg pain has decreased so much that I do not need Lyrica any longer. He felt that my improvements were good news but wondered about the source of my leg pain. As we talked he began wondering about the source of my fatigue as well. It didn't take long for him to begin questioning me about the fact that I take Xanax to stay in a deep sleep. He reminded us that fatigue can come from other sources besides MS. I told him I never had sleep issues before developing MS and he expressed interest in having me take a sleep apnea test.

It is only fair to fully disclose that the biggest cause of concern is my terrible snoring. As much as I hate to admit it, I can put grown men to shame. While my husband has trimmed down a good forty pounds since his retirement, he enjoys snore-less nights. I on the other hand have picked up his old habit and increased the decibel level ten-fold. I attributed this "condition" to sinus problems and in a couple of weeks I guess I will find out whether I am right or not.

Doctor P told me if the technicians woke me during the night . . . I failed and indeed have sleep apnea and that we would have to take it from there. I am hoping no one wakes me up but if it has to sleep apnea at least I can look forward to getting a better night's sleep in the future.

Improved Leg Reflexes Surprise #3

As the examination moved forward, it was time to check the ole reflexes. I called myself preparing Doctor P in advance about how my right knee barely moves when tapped. Again it gave him cause for pause since the normal MS reaction is that a knee tap causes the leg to fling up in an exaggerated way. My husband and I assured him that would not be the case with my leg.

By now you have probably guessed that my leg kicked up like crazy. My husband and I looked at each other and both yelled out at the same time, WOW!!!! We both told him that my leg had never done that before and I specifically asked if my reaction, now normal for MS, was due to Gilenya. He said he couldn't be sure it could also be that I had an injury that had nothing to do with MS which healed on its own.

You have to love this disease don't you think? Just when you think you have things figured out you find out you don't. At times like this you just have to rub your head, look confused, and chuckle.

Now my right leg has also made it to his list of problems to look at down the road.

In Conclusion

Meeting Doctor P means I must now get to my new GP and get my blood pressure, cholesterol and diabetes checked out. I am just going to expect all the numbers to be bad and prepare to begin another 15 years of taking drugs for the problems, non-stop.

I will be experiencing what it is like to be tested for sleep apnea and am actually thinking that being diagnosed with the problem would be tolerable if it means I can finally get a good 6-8 hours of sleep. Maybe I will even be able to ween myself off Xanax completely and sleep normally again.

Although the likelihood of macular edema is slim to none at this point, I still have to visit an ophthalmologist to take a good look at my eyes. I forgot to mention that my eye problems have caused me to stop driving a great deal of the time. I am hoping I just need a stronger prescription. If it turns out my eyes are fine, I will have to attribute this decrease in vision to some weird sort of cognitive problem no doubt MS related.

Meanwhile let us hope this snoring problem gets solved. I don't know how much longer my poor husband can put up with all this noise!


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    • Jen's Solitude profile imageAUTHOR

      Jen's Solitude 

      6 years ago from Delaware

      Hi Paradise7, Connie and sarafr198,

      I hope everyone's weekend was okay. I enjoyed being able to get out of the house and actually meet with my congregation in the flesh. I am tired now, but it is a good kind of tired. :)

      Paradise it would take a lot to make me stop taking Gilenya now. Like you said this is the one treatment that is working after the six month time period. I sure don't want to give it up!

      Connnie, you are so right. I haven't felt this good in 5 years. I am hoping that the longer I take it, the more improvement I will notice. What a joy it would be if I can just get back to the way I felt 10 years ago. I wouldn't know what to do with myself! LOL When Doctor P asked me why I wake up every hour on the hour when I don't take Xanax, I told him I wondered the same thing. It is impossible to fall into a deep sleep with that happening and I would love for someone to tell me why that started only after the MS settled in. Maybe he will be able to offer an alternative.

      sara, thanks so much for the links. I have noticed a marked improvement in my health since I have incorporated the many suggestions made to me over the last few years. My husband says he has successfully converted me over to a more healthy lifestyle. He is shocked now when I suggest food that I wouldn't have considered eating before my transformation. LOL It has helped though and who knows, maybe in combination I am reaping more rewards than I ever thought possible.

    • profile image


      6 years ago

      Hi Jen,

      I'm glad to see that you're noticing improvements using this new medication.

      I was wondering, have you ever tried the Swank or paleo diet (reversed a woman's symptoms...she had a TEDx lecture on it:

      There's also Clean Cuisine that is was formulated by a nutritionist who had MS and her doctor husband ('s talked on a few programs including the Montel Williams show and says she's been pretty much symptom free for 10 years.

      I'm G6PD deficient and I found that there are quite a few foods that people with G6PD deficient people are supposed to stay away from to avoid hemolysis or low cholesterol which could both probably contribute to neurological diseases.

      I've been taking two teaspoons of black seed oil (Nigella Sativa) every day. It has over identified 100 therapeutic compounds, many health benefits, is safe and natural (black seed is often used in African and Southeast Asian cooking). There are accounts that it has reversed MS and other autoimmune diseases.

      Sorry this is such a huge post...there's just so much going through my mind based on all the different things I've read so far as a newly diagnosed person.

    • Connie Smith profile image

      Connie Smith 

      6 years ago from Tampa Bay, Florida

      I know it is not a cure, but like Lexi, when you have a major disease, even minor improvements are something to celebrate. It sounds like you are having some real progress here. That is exciting and very encouraging. It would be great if they find out that the current source of any fatique is sleep apnea and there is something to be done. I hate that you are on Xanax all the time. I have a prescription, but I use mine very sparingly. That is not a medicine to take lightly, it is too addictive. Hoping that they can do something so that you won't need it. Keep up the good work here, lady, on all fronts! ps Happy Anniversary! My three year is coming up in two weeks.

    • Paradise7 profile image


      6 years ago from Upstate New York

      A treatment. A real treatment that seems to be working! Praise be. I know there are a lot of risks, a lot of side effects, but still...hallelujah!


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