Peg's Chit Chat Corner: June!

[Virginia]

Thank you so much Howie. I guess I am not quite as alone as I thought.

[Ikoiko]

To Virginia and Linda, I hope you get over your MS exacerbations soon. I know they are scary. I can't believe my new neurologist at Johns Hopkins recommended that I think about stopping MS drugs now that I am 64. I told him no way. I have seen plenty of older patients have exacerbations!

[agate]

Virginia, I hope you'll get some news of Eric soon--and that your symptoms will let up. If it's been hot there, could that be part of the problem?

It's been 100' here today, and I've been noticing how rotten I feel. Vision is very bad. I tried to turn the thermostat down and couldn't see the words on it. With a flashlight and a magnifier, I did a sort-of job on it but may not have got it right yet.

Selling your house may not be such a bad idea. I don't recall how bit a house it is but I'm here to bear witness that I was mighty glad to be shed of my house even before I knew what was wrong with me. I had had it with leaky roof problems, carpenter ants, field mice, rotting fascia boards, snowstorms, and frozen pipes--not to mention a burner or boiler or some such that had to be replaced. And worrying about the fuel deliveries. And the leaf-raking, grass-mowing, snow shoveling. Oh, and the trees.

What a relief when all of that was no longer my concern!

If you have activities, like hobbies, that need a lot of space, you might want a fairly large place but there are apartments and duplexes that have all kinds of possibilities. Or maybe a rental house, where the owner would be responsible for the upkeep?

No, you're not alone! Here we are. We may not be the BrainTalk of the days when a thread you started at 10 AM would be on page 6 by noon, but there are still people here who like to think we're your friends, even at a distance.

Ikoiko, I agree about not stopping MS drugs. I was in favor of stopping them at a certain point, and I did stop (Copaxone) for a 10-year interval--but started it up again (as Glatopa) about a year and a half ago. I've been on the lookout for discussions of this issue of whether an MS drug should be stopped after a certain age, and it looks as if most experts wouldn't agree with the neurologist who told you that.

In fact, there is some evidence that an MS drug might be of some help when it comes to COVID-19. For instance:

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


(from PubMed, June 24--"Outcomes of multiple sclerosis patients admitted with COVID-19 in a large veteran cohort")

[Virginia]

Ikoiko, you were smart to tell your new Neurologist that you did not want off your medication. Suze-Q posted some research on here that said that older people should not come off their injections that they had been on for a lengthy period of time. If I remember correctly this research focused on the older drugs that you have to inject. However, it makes sense to me that this would also apply to any of the MS medications. I am a little shocked that someone at Johns Hopkins would suggest this to you. We always have to be aware that there are many Neurologist who are misguided on the subject of MS, even if they treat MS. Part of this may be because there are no MS schools to teach them. They just take an interest in it and then become what is known as MS specialist.

I did hear from Eric this afternoon. He and my other brother called from the car. My other brother was taking him to another town to get his MRI where they have an open machine. He is extremely claustrophobic. He said he gets some relief when he takes the muscle relaxant that the doctor gave him, but when it wears off he begins to hurt again. He also said that if he does anything at all he begins to hurt, said he couldn't pick up the slightest thing. He has his own "theory" as to what is wrong. He said he thinks he might have a slipped disk and that it is in the process of going back in on it's own.

Agate, I do not have all the things to take care of that you mentioned. I am in a town house which is why I don't. However, I have 3 bedrooms and 3 full baths. I think I just feel overwhelmed. I have so much stuff to go through and decide what to get rid of. So much of it I hate to part with, but I will have to. There are drawers in my computer hutch that have a lot of things and drawers in my desk that are full and then there is a file cabinet. I have a bookcase full of books and I will have to part with all of those. I have already given many away but had still kept a lot that I just hate to part with. I have two walk in closets plus two regular closets. All these places have to be gone through. There are so many pictures that have to be gone through. I have two chest and two large dressers with things in them, then I think of all the junk that I might have in the 3 bathroom cabinets, plus kitchen cabinets and it all overwhelms me.

It rained here today. I got a call from a man I had hired to power wash and stain my deck. He called from the paint store and I paid the paint store man over the phone for the stain. I have been working with this man for about two weeks. He seemed like a go getter when he came to power wash the deck and walk way. He did a good job, but since has been putting me off.
Then I got another call from the plumber who was supposed to come and fix the toilet in my master bath and he put me off until tomorrow. I have been waiting for him for more than a week already.

I just got another call from Eric and Fred. They were on their way back from the MRI. They gave Eric two valium and they ended up having to take him out and put a cold cloth over his eyes. He was really upset. He opened his eyes in the MRI. This is his first one and he thought because they said it was open that he would be able to see out when he opened his eyes. He said if he had been prepared for it to be about an inch from his body that he might not have been quite as bad because he would not have opened his eyes. Neither of them can understand how I just go and lay in one with no valium or anything. Fred is better about it than Eric because he can take two valium and tolerate it. MEN!!! Howie is an exception to the meaning of that last word I wrote.

[agate]

Having 3 bathrooms to take care of can't be easy but I do recall quite a number of years when I had 3 bathrooms and I found that they stayed cleaner longer and needed new supplies less often than when I had just 1 bathroom for the same number of people, and so in a way having more rooms can be an advantage. Since you've just done some major work on your place, I have a feeling that just going through some trouble spots and doing some sorting will be all that is needed to make your living situation more manageable.

Too bad your brother has claustrophobia! Yes, those MRIs aren't for the claustrophobic at all. I do just close my eyes and imagine I'm in some pleasanter place and almost doze off except that the noise of the MRI (clunkety - CLUNK!) gets in the way of a real nap but what works for one person won't work for someone else.

I sometimes get a little dizzy about heights but not always. Today began with the partial removal of two trees right outside my windows. This has been in the works for years but they came all of a sudden, with no advance notice, and just started sawing. Large branches kept dropping near or on my patio all day, and there will be more tomorrow as they still have to do the rest of a very large tree, I think a Douglas fir. The guy with the saw was way up in the tree sawing away, and I could see the trunk of the tree swaying a lot while he was up there. That tree is only about a foot in diameter at its biggest, and at its base it has been looking damp and rotted for years. I was watching him up there and hoping the tree would hold before he fell. It did hold but at that time I was really glad I wasn't the one up there. And I used to love climbing trees.

Too bad work people keep putting you off! I hope they won't turn up unexpectedly either, like the tree people here just did. Contractors and people hired to do these jobs seem to do whatever they want to do, whenever they want.

[Ikoiko]

I used to have to take Valium or similar to have an MRI, but I have had so many that now I can just go in with no medication.

[agate]

It's too bad that we have to get used to having MRIs but they do seem to reveal very valuable information about MS to those who know what they're looking at, far more information than was ever available before, and they keep developing more sophisticated types of MRI machines that provide more accurate pictures of what is going on.

[Virginia]

I hope they don't want more information about Eric that would force him to have another one because he declares he can't do it. Of course, like a mean sister I laughed and told him how easy it is for me.

[agate]

I thought an open MRI was one where you don't have your head enclosed in that casing. It's too bad they didn't make it clear to him beforehand just what to expect. Maybe he won't need to have another one.

Men tend to suffer in silence, and he may hesitate to bring up his claustrophobia with the doctor in advance but it might be a good idea to do that.

Men so often don't tell anyone when something is troubling them or they're hurting in some way.

[Ikoiko]

Virginia, I think most MS specialists do a fellowship in MS after their residency in neurology. So they have quite a lot of training in MS. Of course, any neurologist can treat MS. Catdancer felt comfortable having her PCP treat her MS until she had a big exacerbation after he recommended discontinuing her MS medication due to her age.

[Howie]

Men so often don't tell anyone when something is troubling them or they're hurting in some way.

Sam bit down on my arm a few hours ago and won't let go.....but it's not worth mentioning.

[agate]

Virginia, I think most MS specialists do a fellowship in MS after their residency in neurology. So they have quite a lot of training in MS. Of course, any neurologist can treat MS. Catdancer felt comfortable having her PCP treat her MS until she had a big exacerbation after he recommended discontinuing her MS medication due to her age.

Also, doesn't an MS specialist have to have a record of having treated a certain number of MS patients already? I found this but don't know whether it's the only way to become an "MS specialist":

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

Sam bit down on my arm a few hours ago and won't let go.....but it's not worth mentioning.

Definitely not worth mentioning. That saying, "If it bleeds, it leads," is just plain nonsense too. "No pain, no gain" is a better motto for you.

[Virginia]

Howie, Sam would not do that unprovoked so confess and tell us what you did, like possibly refuse to give her part of your supper???

Ikoiko, I was just quoting my first Neurologist who was about the most honest doctor I have ever met. He just said that there were no MS schools and that Doctors just developed an interest in MS and started treating it. He went to Duke for his Doctorate, but was in Massachusetts at (I believe) Beth Israel when he did his residency. I am going to look that up when I am not so tired. I know he spent some time doing something at Mass. General. I wish I still had him as my Doctor. He would book me late in the afternoon and sometime we would just sit and talk for 40 to 45. minutes. I could talk to him about anything and I could always get in touch with him. He just wanted to be a patient doctor and didn't care so much about the business end of it.

[Virginia]

I can't remember if Rose had Dental and Doctor visits this week. If so I hope all is going well.

[Howie]

Agate, you are the person to ask, is payday tomorrow?