Tag Archives: Gastroenterologist

Liver Test Results Still Abnormal = Liver Biopsy

Day by Day with a Movement Disorder Posted on by 7

My liver enzymes tests came back abnormal again, higher than they have been, so I had a liver biopsy this morning. It will take about a week to get the results.

We had read online about what the procedure would be like, but what they actually did was a good bit different. And I’m still hurting, although not as bad as I was right afterwards. I’m still not able to take a full breath without a sharp pain at the entry point. If feels like I’m getting stabbed every time I inhale with any breath that’s not shallow. Morphine and Lortab barely cut it at the hospital, and they’ve long since worn off. I don’t want to take Tylenol, as I think it would be a waste of time. If I’m still hurting this much tomorrow, I’ll call my Gastro and ask for a prescription.

I’m guessing that my diaphragm is having myoclonic jerks from the irritation to the nerves in the diaphragm. And of course I’m not taking any Myoclonus meds now.

We’re praying that the results of this procedure will give a definitive answer as to whether or not I have any kind of liver damage. Reading all the side effects that the various meds I’ve been on and off for the last six years, it wouldn’t be too surprising if I had Drug Induced Liver Disease. Or it could be Fatty Liver Disease, as I used to weigh 182 pounds. I’m a small boned 5 foot 2 inch lady, so I was way overweight up until about a year ago.

My Neuro is waiting for all these liver tests to be dealt with before he will proceed with referring me back to the Movement Disorder Specialist at UAB. He’s the Head of Neurology there at one of the best diagnostic hospitals in the USA. He’s the one who gave the dx of Essential Myoclonus. But now I’m not jerking and almost too weak to walk.

I also have an Endocrinologist appointment next month. So I’ll see him, if the liver biopsies come back as normal, to check for thyroid problems.

Dr. House, Where ARE you???????

Please keep us and my doctors in your prayers. We need an answer.

Hemochromatosis – Another Possibility Crossed Off the List

Day by Day with a Movement Disorder Posted on by 4

Well, the DNA test for Hemochromatosis came back normal, so that’s another possible diagnosis for my weakness ruled out. But after doing the research on this particular line of testing, I would caution anyone with Anglo Saxon ancestry to consider this as a possible cause of a wide range of disorders, from Type II Diabetes to heart problems.

It’s the most common genetic mutation found so far, with as many as 1 in 8 of Irish descent being a carrier of the gene. Something in the range of 1 in 300 Northern Europeans have at least one of these mutated genes, but it takes the mutation from both parents for the likelihood of symptoms to be dramatic. And if caught before organ damage is done, it can be easily treated. It normally takes many years to build up the iron overload, so most people don’t show symptoms until they are older.

With the Hemochromatosis test being normal, my Gastro doesn’t want to see me again for 6 months. So I guess that means he’s ruled out any liver problems as being the cause of my problems.

So, I’ve requested a Western Blot Lyme Disease blood test. I know this is a very, very long shot, but I have had the bull’s eye rash from a tick bite in the past. We found it one evening and were waiting at the doctor’s office’s doorstep the next morning. He put me on a round of antibiotics at that time. So the chances of having Lyme are not high, at least from that event. BUT, I have always lived in Alabama, and ticks are everywhere. I can’t count how many times I can remember finding them on me over the years, and their bite doesn’t always make the bull’s eye rash.

Lyme Disease can mimic lots of other diseases, depending on which organs the bacteria attacks, including neurological disorders. Treating it involves long term antibiotics, which may or may not reverse the damage already done to the body. So, I’m hoping this test turns out to be negative.

I did get a referral from my GP to an Endocrinologist, and I have an appointment with him in mid August. I’m still holding out hope that this terrible weakness turns out to be from Hypothyroidism, which our daughter has been treated for for many years. My symptoms do fit, even though the routine tests came back normal. But it is possible to have a hypothyroid condition with normal tests. It would explain my muscle weakness, hoarseness, and intense itching, and it’s fairly easy to treat.

I see my Neuro again next week, so we’ll see what he says then.

In the meantime I continue to use the cane outside the house, and could really use the walker. But I’m back to that same head space I was years ago when I was originally dx with Parkinson’s. There’s just something about “giving in” to the walker that I try to put off as long as possible. It’s bad enough having to use the cane, without having people see me as getting worse. It draws too much attention to me, and I can’t stand that.

So for now, I’m praying this turns out to be something simple to treat, like thyroid problems, and not some exotic disease that may never be diagnosed.

I’m trying to be patient, but frankly I’m not doing a very good job of it. I deal with an enemy I know much better than I do the unknown. But I’m in God’s Hands, and He knows my needs far better than I ever could.

Align = Feeling Better

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Well, the Align probiotic that my Gastro’s nurse told me to use has definitely helped my stomach. I’ve not been nauseated this morning for the first time in almost two weeks, and it feels great. I’ll continue to be more careful than usual with what I eat for another day or so, just to be on the safe side, and I’m going to finish out the month’s worth of the Align. Then I’ll go back to using the generic Acidophilus I’ve been taking daily for the last couple of years.

I did go back to using the Triavil, which is used to treat IBS, for the full 3 doses. My Gastro had just recently suggested that I cut back to 2 doses a day, and to see if I still did OK. I had cut back a few days, but then all this stomach upset hit, and it just didn’t seem like a good time to be changing things. So I’m not sure when I’ll try cutting out a dose just yet.

I did lose another pound this week, which isn’t too surprising, since I haven’t felt like eating a whole lot. I was actually hungry last night by supper time, and that’s another good sign that things are returning to normal. I haven’t felt like exercising, and really didn’t think it was a good idea while I felt so bad, so now I need to slowly work my way back into that routine.

The mouth tics subsided a couple of days ago, but I’ve been waiting to be sure they were under control again before jinxing it by saying anything about it. I’m not sure if the strong antibiotics neutralized the Primidone, or if it was just because I felt so bad. Maybe it was because everything, including medicine, was going through my digestive tract at high speed for a change. Who knows…

The important thing is that I can tell I am finally getting over it, and that’s a wonderful relief. Particularly since Thanksgiving is getting so close, I’m glad I can look forward to being able to eat with the family. I had already decided that I would ignore my glucose readings for that day and just enjoy being with everyone and enjoy the food. Then I’ll go back to the 1200 calorie diet I’ve been on since April and continue to limit my carbohydrate intake. I’ve been giving myself a splurge meal about once a month, anyway, so this month it’s for Thanksgiving.

In a effort to prevent another UTI, which started this whole snowball effect of digestive problems and Myoclonus tics, I’m trying to consciously be sure I have completely emptied my bladder each time I urinate. When I became so conscious of it, because it was painful, I realized that I haven’t been emptying totally, probably for some time. The nerves that send such messages just don’t work as well as they did when I was younger, or before the neurological disorder reared its ugly head. And, from what I’ve read, diabetics are more prone to this problem, too.

So, it’s a good day today, and I can look forward to many more, as long as I continue to persevere with a good healthy diet and exercise program and take my meds religiously.

Merry Christmas!!

Day by Day with a Movement Disorder Posted on by 9

The Christmas presents are wrapped, and the stocking presents are ready for stuffing, the house is straighter than it has been in a long time, and I’m in good spirits. Not everything is the way I would wish it to be, but I’m thankful for my improved health and the health of all our family. I pray to God daily, with confidence that things will work out for the best for our family.

My elimination difficulties are settling down somewhat, but the gas was particularly bad yesterday. It’s hard to think of eating out in public, not knowing how my body will react. Hubby and I can joke about it, but it’s extremely embarrassing even just with him. My intention is to wait until after the holidays to get back with my Gastrologist, since my normal routines and diet are disrupted so much right now. Yes, we both love fruit cake, and I had a small piece yesterday, plus a little bit of egg nog. I don’t know if that set off the bloated feeling or not, but I was not comfortable.

I’m better today, at least for now, so maybe I’ll be more careful with what I eat today and see how I do. That’s easy to say now, when I’m not hungry and there are no luscious desserts tempting me.

I’m particularly pleased with my progress with my morning exercises. When a muscle is used for awhile there is a buildup of lactic acid in the muscle fibers. This causes the pain we feel when we exercise. I was not able to do even one repetition of 10 of any of my exercises at first without tremendous cramping. Now I can do almost all of them for 2 repetitions, as long as I don’t do them in a row. So, I go through my Tai Chi form, and then repeat it all for my full 20 times each. This gives the muscles a chance to rest, but I still get the full routine in. While I’m sitting at the computer I do the same thing with my neck exercises, going through the whole routine twice so I get 20 times for each motion.

I’m still doing only 10 minutes on the mini trampoline, and still having to do little resting movements every couple of minutes. But I can get through a whole song on the radio now doing jogging motions that make me bounce all over. This should be good for my gas and digestion problems, too. Until I can “jog” for the whole 10 minutes there really is no point in staying on it any longer.

My little victories in my exercise routine would certainly seem trivial to someone in good health, but I am very proud of how far I’ve come. And I have hope that I will continue to increase my level of activity.

Yes, today is a good day.

Go-Litely AGAIN!!!

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I talked to the Gastro’s nurse again on Thursday, but his answer was not what I wanted to hear at all. I have to do the Go-Litely again! He seems to think that the large amount of gas I’m experiencing means I am still blocked. We had our Date Day as usual yesterday, but I am ready to start this mess all over again this morning.

I’m dreading it. If this doesn’t help this time I’m calling my Neurologist to see if there is any other Myoclonus medicine he could try me on. If not, it looks like I will be buying stock in some prune juice company! I’m already eating prunes almost every day, plus the complete Bowel Retraining routine as laid out by my Gastro.

As for Date Day, we enjoyed each other’s company, as usual, but the sales were basically duds. All this talk of hard times led us to think that we would see some “good stuff” being sold, but that was not the case yesterday. Oh well, we still bought enough to pay for our meals and maybe even our gas for the day. And it continues to be a lot of fun that we both look forward to.

I’m approaching 1,000 items listed in our online catalog of plush animals and dolls, so that is keeping me busy for sure. My goal had been to reach that milestone by the end of the year, but I think I may well exceed it.

My short bursts of energy to get housework done are getting longer, with less fatigue, so I must be improving my overall strength conditioning somewhat. I hope to continue to increase my activity level and get back to a regular exercise schedule. I’ve been doing my neck exercises faithfully now for some time, and it has helped. Now it’s time to add the Tai Chi back in on a daily basis. So much of this just takes will power, something I seem to be low on these days.

Speaking of will power … I’m having trouble saying no to sweets and chocolate in particular. And my weight shows it. Also, I’m keeping a nagging feeling of hunger – and I know that means the stomach ulcer is acting up again. For some reason I have always had a sensation of hunger when my stomach is hurting, rather than one of pain. There is a dull pain sensation when I press on my stomach.

All this digestive mess has turned into a bigger problem for me than I could ever imagined. I always thought you just took a laxative and that was the end of that problem, but it’s just not that simple when the medicine I am on is working against me in that respect.

It’s time to stop writing, as I am getting back into pity party mode here, and I don’t like that. I try to stay on a positive viewpoint, but anticipating this stuff today has me pretty low.

Oh well, this too shall pass. Sorry, couldn’t resist.

Changing from Bentyl to Triavil for Digestive System

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You may remember when my pharmacist caught what would have been a potentially fatal drug interaction some months ago, when I was still on Parkinson’s meds. At that time my Gastro was searching for some way to help my digestive system to work properly. He had prescribed Triavil, but ended up putting me on Bentyl instead. I have been taking it four times a day ever since. It worked well until I started on the Primidone, but I have had increasing and persistent digestive problems ever since.

He put me back on the strict Bowel Retraining program, limited my food choices even more, put me on the high powered PrevPak to heal the ulcerated stomach that the Endoscocpy found, and expected me to improve. I didn’t. Then he tried a week of some new med called Alinia, but still not any real improvement.

So today, since I am no longer on the PD meds that contraindicated it, I start on Triavil.

It might help if I explained how all this tummy trouble is related to the Movement Disorder. When I am not on medicine for it, it’s real easy to see the uncontrolled movements of various skeletal muscle groups. The twitches, jerks, shakes, tremors, and awkward gait could not possibly be ignored.

But what cannot be seen is what is happening inside me. If I try to stick out my tongue, even now that I am on medicine, you see that it is in constant motion. The same thing is true of throat muscles. Sometimes I can hear the click of the soft palate spasms, and I really didn’t realize that this was anything unusual. I have always had times when I could hear that click. Then come the muscles in the esophagus, that should rhythmically move food down to the stomach, where coordinated muscle action churns the food, passing it on to the small intestines. After the coordinated movements of peristalsis push the undigested food into the colon, the body removes the liquid and eventually we eliminate the solid waste, again using coordinated muscle movements.

Gee, did you notice my intentional use of the word coordinated??? Well, mine AIN’T!!!! It’s no wonder I have GERD, stomach cramps, bloating, gas, constipation, and even problems using rectal muscles properly.

So the Neurologist helps with the skeletal muscle problems, but it’s my Gastroenterologist who helps me with all these internal muscle problems. He has found the right combination to keep me comfortable before, and I am confident that he will this time, too.

I’ve Been OFF the Ulcer Antibiotics for a Week Now

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Well, I’ve been off of the PrevPak high powered antibiotics for my ulcerated lower stomach now for a week, and I am not feeling good at all. I had hoped once the meds were out of my system that my energy level would pick back up. But my stomach still feels heavy and sometimes there’s the same dull pain. I just don’t feel good. Nothing I can really describe … one of those you know it when you see it kind of things. I’ll keep on eating a little something with each dose of pills, and I’ll be calling the Gastro this next week for sure.

We had a very sad occasion at our church this week. Our Minister of Music passed away from kidney complications after his second heart transplant surgery. We did not go to the funeral, which was huge. He was well known all over the state from long time service in many churches and choir functions. I just was not up to the crowd. And I did not go to Sunday School today either. Our class is about half choir members, and I knew they would be so upset. I can’t handle my emotions at all any more, and it makes me jerk and shake when I get upset. So hubby came back and got me for church. It was a beautiful worship service, but as the Pastor said – Everyone was in a fragile state right now. I’ve never been in a church where a staff member died. It was almost like a continuation of the funeral service in a way, except more joyful. After all, we know he is well and happy now, although people close to him personally still grieve for his loss here on earth.

It does help to put my aches and pains into perspective, though. So I feel yucky. I can still get up and move around the house easily enough, and I can work on the computer as much as I like. I enjoy helping people on the Lost Toys Search Service, and it’s fun to get sales from our website and on eBay. I enjoy hearing from our children and grandchildren, and I have the most wonderful hubby any woman could ask for.

I am truly blessed by God, and I can’t thank HIM enough for all the blessings he has given me over my lifetime.

Today is My Last Day on the High Powered Ulcer Antibiotics

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I have been counting the days until this Prevpac was finished, because the strong antibiotics have sapped my energy something terrible. My tummy is still tender and I get very uncomfortable after anything, even water, is swallowed. So I don’t think the ulceration in my lower stomach is healed yet. I have felt a little better since I started eating a little something with each medicine dose, and I spread my meds back out over the day the way they used to be. I’m hoping that will keep my stomach from getting irritated and inflamed so badly again.

I am blaming this on the stress that the Clonazepam put me under, plus I have a long standing problem with GERD and have had ulcers before. I have not felt like exercising for a long time now, and I know that I need to, whether I feel like it or not. But the thought of moving is just so overwhelming. There are days when everything seems like such an effort. It’s hard to explain, but sometimes the thought of even getting up to go get a drink of water seems to be too much.

I’m not really depressed, the way I was with the Clonazepam, but just totally wiped out physically, which leaves me low on brain power, too.

So I am celebrating that this is my last day of this stuff and hoping that I see some improvement in my digestion this next week. If I don’t I’ll have to call the Gastro’s nurse, and I suspect he will put me back on another two weeks of this stuff. That’s what happened the last time I had an ulcer.

As for the jerking and tics, I am doing just fine. I have them more as the day goes on, but nothing at all like they used to be. I still startle in an odd way over the least little thing. My body seems to paralyze for a moment, my eyelids flutter, and everything goes blank for a second or two. Then I come out of it and usually realize that whatever startled me was trivial.

I have been able to use the relaxation techniques I learned a long time ago when I was being treated for Functional Dysphonia. I am using the low register of my voice, instead of allowing it to be the high pitched “female” voice. I have sung alto since elementary school, so that is a good indication that my speaking voice should probably be lower than what I normally use. Making a conscious effort to breath at the beginning of make a sound and letting it come from down deep has taken a lot of the strain off of my vocal chords, so I am not choking and gagging with a horrible tickle all the time any more. This was obviously stress induced, and that means I can control it to a great extent.

So once again I choose to look for the positive improvements I have made and hope and pray for continued good progress.

Tummy Is Still Complaining

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I’ve been on the Prevpac high powered combination of two antibiotics and an acid reducer twice a day now since Monday, and my tummy is cramping more now when food or medicine touches it than it was before I started the medicine! Go figure. I’m going to call Dr. B’s nurse this morning, to see if there is something else I should be doing.

I have continued with the Glycerin suppository routine, but I quit the Milk of Magnesia every 3 days, as it did not seem necessary. I also moved a few of my medicine times around so that the Primidone is not the last thing I take before bed. That dose was going into a completely empty stomach, since I have to empty my tummy before I go to sleep, thanks to GERD. What I came up with is not ideal, but probably better than the way I had it. Now I take the Bentyl last, which is supposed to help the digestive muscles work smoothly and in the normal coordinated pattern, instead of spasms. Not sure that is any easier on my tummy or not, so I have several questions for the nurse.

She has been his nurse for a long time, and we have a good relationship. I have the highest regard for my Gastro and his nurse. They have both been very considerate and patient with me over the years. I never feel like I am being rushed through a mill. I have had a few doctors like that over the years, and I fired them all. I grew up with a family doctor who made house calls, so I like to use medical people who are willing to build a relationship with me. I am very thankful for the great doctors and staff who help me with all my health issues.

I continue to spend a lot of time on our Lost Toys Search Service, and on our online Catalog sales. I’m still a long way from having even half of our inventory cataloged, so it keeps me busy and mentally alert. There’s something new to learn almost every day, and that’s good for the old brain cells.

Speaking of sharpening the brain, have you tried the new Numbrix puzzle that Savant has added to her Parade Magazine article. It’s fun! I even found a place online to work the ones from past issues. I could get addicted to this puzzle very easily, and it’s a nice change from Sudoku.

So, tummy is still a problem, elimination is doing better, and brain is being stimulated. I’m not feeling good, so my energy level is low, but I am getting quite a bit accomplished each day.

All in all, no brain fog and no jerks …. I’d say that’s a good thing.

Now on Antibiotics for Stomach Inflamation

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We received the answering machine message Friday that the Endoscopy biopsies were all good, but did not get a chance to talk to the nurse about what my Gastro had found. So I called first thing this morning, and he is putting me on the pre-packaged set of antibiotics and acid reducer pills normally used with ulcers.

She did say my stomach lining is very inflamed, but she never actually used the word “ulcer”, so I’m assuming it falls more under the term Gastritis. I will have to do the research again on Primidone, because my Neuro said he had never heard of that as a possible side effect.

I do know that Primidone headed me in the direction of constipation as soon as I started taking it, so I was blaming the tummy problems on it. But as bad a reaction as I had to the Clonazepam, it could be that it was that medicine that inflamed the tummy, and I just felt too miserable to realize my tummy was getting worse.

Regardless of where the blame should be, I now have a treatment plan to deal with it. I also remembered to ask her if it was OK for me to continue to drink the decaf versions of all the High Anti-Oxidant teas that I get each day. Hubby is poking a cup at me all day long! LOL!!! But it’s part of our Super Nutrition routine that I am glad to continue. Some days I get as many as a dozen cups of various herbal teas. As you might imagine, I get a lot of exercise just going back and forth to and from the bathroom!