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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 42 minutes ago | Replies (7069)

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@jimhd

I've been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington's Disease is very unlikely. I haven't discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don't know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I'm glad for that, but I'd still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises - I never thought I'd have to exercise my tongue - and I'll see the ENT doctor for a follow-up to see if they've helped. If they don't, I'll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that's many years in the future.

I've had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy - since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it's made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I'm not sure that it did anything at all. I've also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I'll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I've had the rep from the stimulator company adjust the settings twice, and he's available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He's concerned that if the pain returns, it would probably have an effect on the depression, which I don't need right now. We've been working on some tough issues that have affected my life since I was a teenager, and I find that it's a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it's chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it's cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won't eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that's what I've been up to the past few months.

Jim

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Replies to "I've been having a number of tests done lately for more than one issue. The genetic..."

Hi Jim @jimhd

We so appreciate the update. I'm glad that Huntington’s Disease was found to be an unlikely diagnosis, that is good news. I hope your neurologist visit goes well, they are good at figuring out some of the tough symptoms.

I've had a lot of speech therapy for swallowing and speech volume (paralyzed vocal cord), but the tongue exercises are new to me. Can you describe what they are like?

Teresa

@hopeful33250

Masako exercise is to stick out your tongue and swallow, maintaining a neutral head position. The second one is to press your tongue against the roof of your mouth, and push for 5 seconds. The third one is to tuck your chin and tighten all of the muscles in your throat and mouth, and swallow your saliva.

So far, these are the ones I do multiple times a day.

Jim

Thanks, Jim, @jimhd

I'll give that a try - the first one sounds a bit tricky - may take some practice. I appreciate your sharing these exercises.

Teresa

help again. i now have over 40 mayo clinic gmails in less than 18 hours. guess i will have to stop using this site. to bad.

Teresa, for the Masako, sometimes I can only go as far as holding the tip of my tongue between my teeth.

Jim

I usually get over a hundred Mayo emails per day and watch at least one video, sometimes up to 150 all told. If I don't want to read them, I just mark them read, or delete them. I usually delete over 1000 emails per day, all told. I don't mind deleting all I do not wish to read. I figure it all helps to keep the internet free. You might unsubscribe from those threads you don't want to read. The only ones I am tempted to do that to are the MJ pushers.

@peach414145

Barb, I stopped following the groups that I was only marginally interested in. I don't check my email every day, so the messages can really build up. Most of them, I glance through quickly and delete them. I respond to a small percentage.

Jim

Hi @peach414144, I am sorry you are getting too many emails from Connect but it’s an easy thing to fix. To turn off email notifications, you can click the unsubscribe at the bottom of the email or you can click your Profile in the upper right corner of the screen and select Account Settings. Then go to the bottom and find Email Notifications. There you can select/disable which notifications you want to have sent to you (or not!).

John

thank you but at age 80 i must have dementia. cannot keep up with this new technology. perhaps if i were born in the fifties instead of the thirties i would be more able to keep up. so,,,, i will delete, delete, delete. (as i have said before, i need a five year old to help me. thanks again patience, patience, patience.

@jimhd That's great that Huntington's is so unlikely but I am sorry to hear about your other problems. I hope they will get resolved as much as possible, as soon as possible. You sound like you are working at staying positive despite everything and I think that is really paramount.
JK