Swallowing Test Tomorrow

[stillstANNding]

Gabriella- Do what you need to do to take care of yourself.

All my best,
ANN

[Gabriella7]

Gratitude

I feel so fortunate to have a forum to come to and share the good and the bad that goes along with life. On Monday, as I was still having pain in my chest as well as additional symptoms of night sweats and chills, I started calling the doctors who are treating me. The urologist's nurse called back and told me it was not a urology problem and advised me to call my PCP and run everything by him so I did. His nurse called me back and said he wanted me to go immediately to the ER. I never heard back from the neurologist office and still haven't. You remember he is the one who has been treating me for the chest pain with baclofen which hasn't worked.

After I rounded up my son, we headed downtown in a thunder storm of rain and wind I was given the necessary evaluation tests and we waited in the ER from 4p until 8p for a bed to open in the ER. It was overflowing with patients and I later learned Monday's are the busiest day and what they refer to as the "sick bus" arrived at 3p. The ER doc had all the tests results back by that time and was prompt in telling me I would be moved to the Cardiac Observation Unit as soon as a bed opened up and a cardiologist would be in charge of my case.

I got moved about 10p and the fun began. If you have not needed to go for chest pain lately they have a test that has to be repeated every 3 hours around the clock so I managed with a Zanax pill to get a 3 hour nap between giving blood for labs. Yesterday, I had a Nuclear stress test (not able to walk the threadmill) but all's well that ends well only it hasn't ended yet.

I have been referred to see a gastroenterologist whom I was advised NOT to see by my neurologist. I have an appointment Friday and another pill to take. I feel better just venting the frustration to a good bunch of people who are understanding. To be continued.........

Blessings,
Gabriella

[Lazarus]

Thanks for the update...

My spasms of the esophagus are back and so I am eating less but drinking Ensure so I am full of energy.

[Gabriella7]

Answer

The cardiologist in the ER called today to tell me that I still have the UTI infection and the antibiotic I was still taking is not working so he is changing it to another. I should call my urologist office and tell them the night sweats and chills were because I DO still have an infection. They told me when I asked if I should come in and get rechecked as I felt like I did still have a UTI that since I was still on an antibiotic it would NOT show up. I guess that nurse didn't know what she was talking about as the culture showed E.Coli....the same bacteria as before.

Another complication.....a neurogenic bladder that keeps infections for over 2 years!!! It's no wonder I have felt so bad for so long as any infection just makes the MS worse. I need some energy so tomorrow I'll buy some Ensure. To be continued........

Blessings,
Gabriella

[agate]

Gabriella, I hope the new antibiotic will do the job of clearing up your infection. Cold sweats and chills can mean that the kidneys are getting into the act. I hope that a doctor is monitoring you pretty carefully. Is this in the urologist's hands at this point?

[Gabriella7]

Agate

Hi, I just called the urologist office and spoke with his nurse. He is out of the office for the next two weeks but she said to take the Macrobid that the ER had called in. You would not believe how many times I have taken this in the past 2 1/2 years since this infection started. The oral antibiotics just are not working anymore as the bacteria have become resistant. I may end up with IV antibiotics when I have the cystoscope and renal ultrasound which is scheduled for July 10th. In the meantime I just have to "grin and bear it".

Blessings,
Gabriella

[agate]

Hi, I just called the urologist office and spoke with his nurse. He is out of the office for the next two weeks but she said to take the Macrobid that the ER had called in. You would not believe how many times I have taken this in the past 2 1/2 years since this infection started. The oral antibiotics just are not working anymore as the bacteria have become resistant. I may end up with IV antibiotics when I have the cystoscope and renal ultrasound which is scheduled for July 10th. In the meantime I just have to "grin and bear it".

Blessings,
Gabriella

It's kind of hard to grin and bear it if you're having cold sweats and shaking with chills. I hope you have a primary care doc you can turn to if the symptoms are making you miserable. Sometimes there are medicines for symptom relief--like pyridium. I hope you keep telling any doctors who will listen that you're having cold sweats.

[jendie]

I'm sorry to hear about all the hoops they are making you jump through, Gabriella. Best of luck to you on your future tests. I hope they find the needed answers.

[Gabriella7]

Update

I have stopped having the night sweats/chills since starting the Macrobid. So now I am just having the swallowing problem and I will be seeing a gastroenterologist this afternoon. My PCP just refers me out to specialists as he has told me "you are too complicated". Hopefully, I am closing in on the problem with multiple trips to see the specialists.....I now have a full time job again.....taking care of my medical issues.... to be continued.......

Blessings,
Gabriella

[Gabriella7]

Another Test

I saw the gastrologist today and now have a full barium swallow test scheduled for the 9th of July the day before the bladder cystoscope and renal ultrasound of my kidneys. He does not want to do the procedure where they use a scope unless it is necessary. That is because of the Myasthenia Gravis that was diagnosed about 3 years ago, while in the hospital, as I could have respiratory problems with the anesthesia and suffer a "double whammy" as he described it.

I definately agree. I am going to the mountains to de-stress for a while before I have these tests.

To be continued........

Blessings,
Gabriella

[daydreamer]

Hi Gabriella. I have made my nearly annual return to the forum to check up on old favorites and ask if anyone had information about a "swallow study" as the ER doc here called it. Between you and Cat, I will be coming back for a while. I do not post much. but want you to know you will be in my prayers. I am sorry your load keeps getting heavier. I hope it gets easier. Lumaie

[Gabriella7]

Update

I'm happy I had a week in the mountains to de-stress before returning to the problems which have been presented to me. The barium swallow test showed a mass located at the end of my esophagus and into the stomach. This explains why I cannot swallow anything but liquids but it does not tell the doctors what it is. The gastrologist laid out all the possiblities and possible further events concerning testing. I am to have a c-scan with contrast first and have to be prepped as I am allergic to the contrast material. It will have to be done at the hospital and I am still waiting to hear when that will happen. I saw my neurologist first and he wanted me to have 3 days of IVIG to treat MS & MG as I am too weak to do anything but lay in bed. Also waiting to see when that will happen. Both will be out patient but I wish they could be done in the hospital at the same time so I would not have to drive an hour both ways as it is so tiring.

In the meantime, I am taking one day at a time and trying to not dwell on the future or the past too much......

Blessings,
Gabriella

[Cherie]

Wow! So much going on Gabriella. I had a constant UTI for nearly 2 years and nothing was touching it including IV antibiotics. I was also on Rebif at the time and the Immunologist finally determined that it was suppressing my immune system so much that I did not have enough antibodies to fight the infection. So they stopped the Rebif and started me on IVIg daily for 5 days then weekly for three weeks and the infection cleared with no more antibiotics on board. Restarted the Rebif and in 2 weeks, the infection was back. So that is when we changed course altogether treating the MS. I am (5 years later) back on Rebif with no UTIs.

Also had swallowing problems back around that time and esophageal erosion and it was determined that the bone density meds I was taking were causing the problem. So now I'm on the once a year IV Reclast and doing a lot better all around. I hope you get a handle on this quickly. Sounds like that trip to the ER was a blessing for you.

[agate]

A number of people on this board are having really rugged times right now. Gabriella, you've had so many medical problems and procedures that you must be very tired just dealing with all of them, what with having to turn up for scheduled appointments and have obnoxious things done to you.

You mentioned wishing that the procedures wouldn't be done on an outpatient basis. I've heard that more and more hospitals are opting for outpatient care whenever feasible, mainly because the risk of infection is so great if you're in a hospital for any length of time.

Since your case is pretty complicated, I hope somebody is overseeing everything and making sure your tests and medicines, everything about your care, is being coordinated so there's no situation where the right hand doesn't know what the left hand is doing.

Taking it one day at a time and living in the moment--that sounds good.

[Jeanie Z]

:) Wow Gabriella that is a lot to deal with. You have been in my prayers and I will add a few more for you. It is hard to do all the things we need to do when we have no energy. I'm glad you keep us posted on how it is going.

Virginia has not posted in awhile. Tomorrow is her birthday so I hope she will check in and we can wish her a happy birthday.

I am staying in the bed a lot and in pajamas. I cannot believe how much I can sleep but I am so tired I guess my body needs the rest. Take care everyone. Jeanie :)