OT January Chit Chat thread

[Gary]

Peg must be running a marathon. With her new treatment she just cant be caught!

We still have not had a single flake of snow since the end of November. And none in sight for the next 10 days. It is going to be a dry summer.

I have had a minor flare, my BP went up with edema of all things. Doc changed my meds and ran a few tests as he is reluctant to just blame MS even when it seems to just be the cause. I am doing MUCH better. I never realized that edema would cause joint pain.

How is everyone doing?

Be healthy everybody.

[Virginia]

Hi Gary, thanks for starting this thread. I hope Peg is not out falling off her horse.

I am glad you are doing so much better. You say you have not had any snow since November. Personally, I would be happy to not have any at all this year. It is pretty, but hard to get around in. My front steps and walk are in the shade and it takes forever for the snow to melt.

I have had the blahs since New Year's Day. I cooked on New Year's Eve and had a friend in, and I was invited out on New Year's Day, but just did not feel like going. I have been in since I bought groceries last Friday. I need to go out and do errands, but every day I put it off. I hope this is not a predictor of what the year will be like. I have just been more fatigued lately. I keep trying to snap out of it, but just have not been able to do it yet. When I saw my Neurologist back in September my thyroid was borderline low, so it may really be down there now. We wait as long as possible to up my medication because it makies my tremor worse - another catch 22 situation. The Rebif I have been on for so many years keeps it running on the low side. That may or may not be my problem. Who knows it might just be the good ole MS. You know how that goes.

I am sure some of the others will be along shortly and let us know how they are doing in this New Year.

Everyone try to keep well and warm.

Virginia

[Gary]

I hope Peg is not out falling off her horse.

Me too Virginia. The board seems slow guess everyone has settled in for their long winters nap.

We have a 20% chance of snow/rain for tomorrow afternoon. We shall see if it actually happens.

[SalpalSally]

Hi Gary.. Hi Virginia. Yes, I'm hoping that everyone didn't make a new years resolution, not to come back to BT..

I look forward to hearing everyone's thoughts, even random thoughts. Don't desert me now. If Facebook interfers with your visits here, then drop Facebook.:ambivalence: Your long list of so called friends there don't care about you or understand your pain, like we do.:o

The little snow we had melted today, with the higher tmps and the sunshine. By the end of this week, it will be springlike again here.

[nuthatch]

This ol' diehard is still here! No New Year resolutions, but I have lots and lots of random thoughts, Sally. Speaking of random thoughts, are you anywhere near Cleveland? I have a brother, Paul, who is a news anchor on channel 19 in Cleveland. You may have seen him on the tube.

I honestly don't know how you folks handle the cold weather, snow or no snow. We've had low 70s daytime temps here and I'm still cold! I just can't seem to warm up no matter what the outside temp is. I also have low thyroid and take meds for it. When it's low, I am super cold and fatigued. But my internal thermostat doesn't work at all anymore, even with the meds. I really HATE being cold!!!!

Another random thought: Just curious, in your dreams, are you disabled or not?

[Gabriella7]

Hi, Did anyone catch the evening news with Dianne Sawyer. They reported on a big breakthrough in treating MS with several new oral drugs as if they were THE cure.
The only one that was shown was Gilenya and I wonder if the pharmaceutical company paid for that advertisement? They showed one women who could now tie her shoe laces when she couldn't before. I wish she had been running in those shoes instead!

Gabriella

Edited to add: I googled Gilenya and found the FDA is investigating the dealth of a women who died within 24 hours of taking her first pill and that was reported on 12-20-11. Why did ABC news make it such a big story and not even mention the fact that the FDA is investigating her death? Why is it these drugs are invented for other treatments (Gilenya as a kidney rejection drug) and then when they fail the original test they are given to us with MS. I just feel more and more like a lab rat!

[Cherie]

Hello all. My primary email has been down for 9 days now. It's a major network and they will compensate for lost time when it comes back but it is a real nuicance.

Woke up to a dusting of snow this morning but temps quickly rose into the upper 30s after three days of teens. We had a post Christmas/New Year's party for David's office and BNI gtoup here last evening with a Yankee Swap, beverages and snacks (about 25 guests). It was supposed to be from 5-7 PM but everyone was having so much fun, the last of the guests departed a little after 10. For some reason, I can't seem to get into gear today. Feels like I'm fighting a cold. I had to force myself to go to the bank and the lab and the store to replace a broken carafe on the coffee pot today and that is not like me lately. Winter doldrums?

[SalpalSally]

Another random thought: Just curious, in your dreams, are you disabled or not?

Always now, but sometimes a lot and sometimes not so much. I always seem to be able to walk, in my dreams, but can't in real life.

[SalpalSally]

I googled Gilenya and found the FDA is investigating the death of a women who died within 24 hours of taking her first pill and that was reported on 12-20-11. Why did ABC news make it such a big story and not even mention the fact that the FDA is investigating her death? Why is it these drugs are invented for other treatments (Gilenya as a kidney rejection drug) and then when they fail the original test they are given to us with MS. I just feel more and more like a lab rat!

I didn't know this and it makes me sooooooo mad. Grrrrrrrrrrrr!!!!

[agate]

I don't remember any dreams any more but back when I did (many years ago) I was sometimes disabled and sometimes not.

As for the death reported in a patient taking Gilenya, they're not sure that the death was connected with the drug:

Only registered and activated users can see links., Click Here To Register...=

No specific cause of death has been determined in the case, which occurred on Nov. 23, and the FDA emphasized that it had not ascertained that the drug was related to the fatal outcome.
Fingolimod's prescribing information includes a warning about bradycardia and/or atrioventricular conduction block in the first hours after starting the drug. Clinicians are advised to monitor patients for six hours following the first dose.
In the fatal case, the patient was also taking the beta-blocker metoprolol and the calcium channel antagonist amlodipine. These drugs are associated with increased risk for bradycardia and heart blocks, the FDA noted.

[SalpalSally]

Agate, if she was on those meds with those possible side effects, should they have put her on Gelenya?? I think not!!

[Jeanie Z]

:) Hi everyone. Peg I'm glad your horse takes good care of you. Gary glad you are better. Sally having the new seat not work is not cool. Cherie I wish I had changed eye doctors after my first cataract surgery. My bad eye is now 20/200 (legally blind) and my good eye should have been 20/20 but it is not and it has pulsating blobs left under the lens that I can see when I look at a wall. I have to wear distance and reading glasses.

David has had several new appointments, a pulmonary doc, a psychologist and he had the nuclear medicine stress teats with contrast. So far everything works well except his liver. All his paper work says preparatory for liver transplant. He Has the oncologist appointment on the 11th.

Then we meet with the liver team for the final decisions. He will have the transplant in Philadelphia. His sister is a nurse in Connecticut and has a daughter in Philly. She plans to go be ther with David for his surgery and after.

We have no idea what time frame they are referring or how long he will be in Philly until we have the appointment with the team. I am making a list of questions for that. I am worried since they took the biopsy if the tumor can spread from the liver through that hole. I hope not as it is contained in the liver when he had the MRI. Please keep the prayers coming.

I feel bad that I cannot go up there to help him but I think it would be a burden as I am on a scooter full time and no good experiences flying with a scooter. Without my ramp van I would be limited. I'm glad y'all are here to vent to. Thanks, Jeanie :)

[Virginia]

Jeanie, glad things are getting going for David. The sooner he gets this done the better. I am sorry you will not be able to be there, but glad he does have family who will be. We are all still praying. Just keep us informed.

Joan, I have low thyroid and I am always cold also, even with medication.

In my dreams I usually see myself as walking real fast like I use to, or doing things that are not possible for me anymore. Only occassionaly do I see myself as a person with any disability.

A friend of mine (who knows me well) saw the piece on ABC about MS and all the new drugs that are coming through for us. He said it made it sound like a cure was just right around the corner. The only thing he saw of any real interest was one man said stem cell therapy had been good for him. Well, DUH! Many of us might try that if we had the funds. They should have pointed out the cost and the fact that it is not covered by insurance - at least that I know of.

Hope all of you are doing well. Cherie sound like you are still doing a lot.

Virginia

[Gabriella7]

Agate, That is the reason I will not take Gilenya as I am on a beta blocker and a calcium channel blocker for a heart problem. Another thing is she was supposed to be monitored for 6 hours after her first dose. I wonder if she actually was monitored by staying in the doctor's office for 6 hours?

As far as a weather report here in the south. Today is beautiful, slightly overcast, temps in the 60's but wait 3 days and all will always change.

Gabriella:angel:

[Gary]

I received a bunch of stuff about Gilenya in the mail I took it to my PCP and he was against it because of the blood pressure stuff and his other concern was taking me off the BP meds might start some new kidney problems. Needless to say I never made an appt. with the neuro.

Brings up a question do most people make regular appts. with their neuro? I do not as there is not much he can do that my already PCP does.

Still no rain or snow and none really predicted for the next 10 days. Its been since the first part of November that we had measurable precipitation.

Nuttin new going on health wise. Meaning I am doing good!

And what is going on in your neck of the woods?