NEW THINGS ARE HAPPENING

[Waydwnsouth1]

As it usually goes with this crazy disease new symptoms are starting to make an appearance. I have recently started having tremors in my hands. Of course they are not painful but they are extremely annoying. All you can do is wait them out. Trying to write is almost impossible and I have found trying to move a mouse around is difficult.

By nature I have always been very organized until lately. I am now having trouble organizing my thoughts and keeping paperwork organized. I am also having trouble with my thought processes. Such having trouble thinking things through in trying to solve a problem. I work with numbers all day in trying to put deals together and I am having trouble in working these deals out.

These cognitive problems can be very annoying. Its gotten where I have someone come behind and check my numbers. Making a mistake costs money and I'm not into that.

All of this has just started happening within the last two weeks. The tremors come and go but the cognitive problems are here to stay I'm afraid.

Does anyone else have these same problems? How do you deal with them? It has become demoralizing to me.

[22cyclist]

Oh boy do I have these symptoms! For the shakiness, I use weighted utensils to counteract the tremors. You can get them online. As far as the typing goes, I have not found a solution to it, and texting, forgetaboutit. I can talk to test though.

The cognitive problems I have real issues with. I took a neurospychological test and the psychologist was able to look at my trouble spots and teach me ways to work around them. Most include playing games like on Luminocity. I always said I sure hate that I spent all of that money for calculous, organic and inorganic chemistry, because now I can't do basic subtraction.

It is frustrating but you may just be having a flare and it will improve after this passes. I would call my neurologist about the tremors, that is a motor thing. See if they will give you some IVSM.

Take care
You are not alone
Lisa

[pennstater]

Unfortunately, cognitive issues drove me to leave the workforce. I struggle with cognitive fatigue, which also impacted physical fatigue, and vice versa. I was a project manager/business systems analyst.

I tried working from home, longer midday breaks, I just couldn't work it out. In the beginning, Provigil did help and even today, if I don't take it, I am in a fog all day. It probably helped me work an extra 3 years.

I also experienced hand tremors and severe weakness after being on the computer a lot and my inability to recover overnight. This went away once I stopped working. Just to add, I have more problems with numbness, weakness, and pain in the arms. But did get back to baseline once I stopped working. The tremors stopped.

Have you had cognitive testing done? If not, I would suggest discussing with neuro. Even if you have, I would pursue getting retested so that a comparison can be made. Depending on problem, some people have had success with Provigil, Nuvigil, Adderall, Ritalin. It may also identify an opportunity where occupational therapy may help and/or accommodations can be made.

Hope you find answers. Good luck.

[jreagan70]

Hi Waydwnsouth1:

I'm sorry to hear of your new developments.

I'm going to toss something out to you that I suggested to someone else last week or so.

Since:
1) You've decided not to try any other DMDs because your fear of them is greater than the demoralization of your symptoms and disabilities.
2) Your neurologist is clueless in how to treat you with steroids and has made you afraid of them also.
3) Your symptoms are onsetting and advancing so fast that, if you decide to change your mind and try a heavy-duty DMD, it may very well be too late.

I'm going to bring up the idea of plasmapheresis. It's used with some success in people with MS and NMO for whom steroids haven't been effective. It removes the inflammatory components from the blood that are contributing to the relapse, ideally allowing the person to gain some recovery in their absence. Success might be 30-40%, but that's a 30-40% chance you have over doing nothing.

Personally, I doubt that your neuro knows enough about it since he doesn't seem to be up on so many other things. But since you're on a downhill slide, this might be the time to push him to consult with another neurologist who does have some expertise and see if plasmapheresis would be appropriate for you. With the other choices you've made, this really is your only other treatment option.

There are no drugs involved, so nothing to be afraid of in that way. I don't remember if any "supportive" meds were prescribed for me at the time, but if there were I never took them.

Some medical centers will do a plasmapheresis series outpatient, others insist on inpatient. In your physical condition, inpatient might be the better idea.

I hate to hear that a man who is "comfortable and accepting" of his decision not to pursue further disease treatment has been so demoralized by something that might be at least partially a consequence of that decision. I hate to see a guy whose motto is "never, never, never, give up" just give up. I know there are many other posters here who don't want you to, either.

[Waydwnsouth1]

I think I need to clear some things up. he idea of me not taking steroids came from a consultation with my cardiologist, which is one of the leading cardiologist in the state. I have been willing to take steroids as an inpatient but my cardiologist is the doctor said that it was to risky. I spent 4 days in the hospital the last time I was on steroids because my EKG's were abnormal. The thought was I was having heart issues. But after have a CT scan it was found my lungs were filling with fluid and putting pressure on my heart. He, my cardiologist, is the one that sent a report to my neurologist that it would be best if I no longer took steroids.

As for my treatments or rather non treatments of DMT's the decision was made in consultation with my neurologist and two other neurologist's. They are friends of my neurologist and they had my records, with my permission, one is located in Houston, TX and the other in Lafayette, LA. Both of who, are MS specialist's. One of them is very aggressive and the other is more conservative. It was after great debate that I arrived at the decision to stop taking DMT's.

Just because I am not taking a DMT does not mean I am giving up. After taking four DMT's and getting no help I thought it was time to take a break, sit back and really take my time to research the new meds on the market and if the risks out weigh the benefits. Some of my choices are rather new to the market and some have been on the market for a while.

So now I wait to see what my next move may be. I am not going to just quit. I don't refer to it as quitting I call it making a choice. there are plenty of people on the board that are not on any DMT's and some have never been on any. Their choice what ever the reason may be.

[jreagan70]

Hi Waydwnsouth1:

That's the most complete explanation you've ever given, and it addresses the concerns many people have for you. But you missed the point.

[Waydwnsouth1]

jreagan70,

It's nice to hear there so many people here that are concerned about me or are concerned about the decisions I have made, either way it makes me feel good. I may show my ignorance here but what point am I missing?[/B]