MRI Results

Impression: Minimal degenerative changes are present.

Dr. P’s notes: No Disc Problems. Mild Arthritic Changes.

Lori will be glad to hear that when she wakes up. Dr. Peditto’s office is setting up an appointment with the Physical Therapy department in their building for evaluation and treatment. I hope they can get us in soon.

Headache Is Gone!

Lori’s headache is finally gone. She was actually smiling earlier this evening. She slept most of the day. When she woke up she felt much better.

No word yet from Dr. Peditto on the MRI results. We called her office just before lunch. The receptionist said they received the results and they were sitting on Dr. P’s desk waiting her review. She said Dr. P would do her best to review them and get back to us but they were really swamped.

They have always been very good at Dr. P’s office about getting us any results. I’m sure we will hear something tomorrow. If Dr. P has found something she is probably already working on an appointment with a specialist.

In the mean time we are anxiously awaiting the results.

Pain in the Head - Pain in the A$$

A Mini hooray this morning. Lori's migraine has turned into a regular headache. She is talking and just had a cup of coffee. Not sure why it came on so quick and so bad. Perhaps the MRI the night before had something to do with it. Anyway, I hope it is truly on it's way out. It was a bad one this time.

Lori's pain in the butt is still there, but has changed a bit. She still has the shooting pain when she moves as well as the off and on numbness in her leg. What is new is the constant localized pain in the right buttock itself.. The pain is not quite sharp but definitely not dull, In addition to the pain, the same area is very swollen and hot to the touch. We're going to try a heating pad this morning and see if that helps.

Lori's Valentines day present (not really but...) came yesterday. I'll post more about that tomorrow.

Migraine Update No.2

11:00 pm and still going. Not as bad as earlier but still there. The nausea stopped this afternoon around 1:00. Since then she has had some soup and a few crackers and has kept them down.

Maybe tomorrow it will be gone.

Migraine Update

On a scale of 1 to 10 with 10 being the worst I would have to give this one a 10 ½

Waiting For Test Results

Short post today. Not much to say.

Yesterday Lori could hardly move again. She was very uncomfortable all day.

We had an evening appointment for her MRI. That seemed to go well. The Radiologist will read the test and get the results to Dr. Peditto by tomorrow. At that time Dr. Peditto will review both the x-ray and the MRI and let us know what is going on.

Today is a migraine day. When I woke up Lori was on her way to the bathroom to get sick. I saw on the counter she had already taken her Migraine medicine. I’m not sure when it came on but it looks like a good one.

She is resting with an ice pack on her head. I hope it breaks soon and doesn’t get any worse.

Super Bowl Sunday - Not So Super

"I feel yucky" Those were Lori's first words this morning when she woke up. You could see it in her eyes she just felt like cr@p. I haven't seem her like this since she was 'recovering' from our vacation at Christmas time. Very listless. No energy and on top of that no strength.

The oxycodone seems to be helping with the pain. It is making Lori sick to her stomach but not so bad it can't be controlled with Pepto-Bismol. We moved the Air Bed downstairs so Lori can stretch out and watch TV (by watch TV I mean sleep). She does appear to be able to get more comfortable than she has for the past week or so. That's good.

I'm not sure if it's the upset stomach or just generally not feeling well but Lori isn't eating very well. Today she hardly ate anything. She is also going through hot and cold spells. She will be freezing for about ten minutes, then a bit later, she will be burning up.

Bottom line is Lori is a real mess again. Don't know why. Mike made an observation earlier that "She [Lori] usually gets like this after you go to one of these out of town Doctors". When I told him that in the past it was because of the Chemo his response was "She used to get like this before she started doing Chemo". Perhaps he is on to something. The long drive and the long day will wear her out. Mike also mentioned the fact that Lori worries about going to see any of these Doctors. I know she was nervous about Dr Richards. He just might be on to something.

Tomorrow we should get the results of the x-ray. I'll post the news as soon as I can.

Saturday Update

Quote from last night: She is in bed now. I thought she was sleeping but I just heard her walking around up there. I should go and make sure she is OK. She needs to sleep well and have a restful night.

Well, she was awake. I decided to go to bed. We talked a bit. I know I keep saying it but she really is in a lot of pain. Unfortunately she didn’t get the “restful night” I was hoping for. She in fact, woke up 6 times between midnight and 7:00 a.m. Obviously she didn’t sleep well. She then awoke a couple more times before finally getting out of bed around 9:00.

The new pain medicine (oxycodone) does seem to help. That’s a good thing. At least she has some temporary relief until we can find out what exactly is happening and how to treat it. Tomorrow she is going to take her 1st dose around 7:00 a.m. and then go back to sleep. Hopefully, when she wakes up (usually between 8:00 & 9:00) she will feel OK. Today it was after 9:00 when she took it. It took a while to take effect.

Fingers crossed for a better nights sleep tonight and a better day tomorrow.

The Back and Leg Pain Continues

Thursday was another day filled with discomfort and pain. Unfortunately Dr. Peditto was not in her office so we did not get in to see her. We did make an appointment for 11:00 Friday. As the day went on Lori complained that her lag was getting numb in addition to the pain.

She took a nap in the afternoon that lasted a couple of hours. Her plan was to cook dinner but was unable. We did go in the hot tub later in the evening. It seemed to give Lori some relief although it really messed with Lori’s POTS.

Today we went to see Dr. Peditto. She was concerned and a bit surprised by Dr. Richards’ prescription for Physical Therapy since he did not first order an x-ray of the lower spine. On a side note she was also amazed when we told her Lori was denied for Social Security Disability again. “Unbelievable” was about all she could say.

Dr. Peditto ordered the x-ray, along with an MRI to see just what is going on with Lori’s lower back. She also gave Lori a prescription for a stronger pain medicine to give her some temporary relief.

We left the Doctors’ office and went right away to get the x-ray. We will have to get the MRI next week. Dr. P will need to get authorization from the insurance company first. We should get the results of the x-ray on Monday and find out when Lori’s MRI will be.

On the way home we stopped and filled Lori’s new prescription. It was almost 3:00 by the time we got home and finished lunch. Lori was really wiped out. She fell asleep right away.

After dinner we went in the hot tub again. It didn’t seem to help as much today as it did yesterday and Lori got too hot while she was in it. You just can’t win sometimes.

She is in bed now. I thought she was sleeping but I just heard her walking around up there. I should go and make sure she is OK. She needs to sleep well and have a restful night.

More tomorrow...

Our Trip To Gainesville = Disappointment

Our drive up to Gainesville was nice but filled with anxiety. We had no idea what to expect with the new Rheumatologist (Dr. Richards). We were very happy after our last visit (to see Dr. Segal) and excited about the possibilities of the two Doctors working together. Unfortunately the visit did not go well.

Dr Richards actually runs the Lupus Clinic. He was very condescending to us and treated Lori more like she was there to help them with their research rather than treating Lori for her illness. He ignored me completely (this was not a big issue as many of the Doctors we have seen ignore me on the 1st visit). He also hardly spoke to Lori. He directed the majority of his comments to Dr. Segal and the Resident that was there. Even that we could deal with. Many Doctors don’t have a good bedside manner. Also, if his job is focused on teaching, he would address his colleagues more than the patient. These issues alone would not stop us from continuing to see him. There were, however, other  problems that came up.

When the nurse took Lori’s vitals, her blood pressure was 144 / 102. Very high (for most people that is). As you know high blood pressure is unacceptable with any type of Kidney disease. As I have previously written Lori’s BP goes from super high to almost non-existent due to her POTS. On our last visit Dr. Segal appeared to know all about POTS and did not seem too concerned. In fact some of our fears were alleviated when he told us the POTS would get better as the Kidneys improve. We’re not so sure he knew what he was talking about now.

When the Doctors came in the examining room (they both came in at the same time) the first thing they said was “we have to get your blood pressure down” they reviewed Lori’s BP medicine and wanted to put her back on one of the meds the Cardiologist took Lori off of a while back. When I pointed out that “Lori’s BP was high because she was sitting and if they wanted a lower reading all they have to do is have her stand up and take it again” they completely dismissed my ability to understand Lori’s condition. Dr Segal just looked at me and then turned back to Dr Richards (who had his back to me). No comment was made to Lori or I. They started talking to each other about changing her meds and which one to add back to Lori’s daily dose of meds. Again and I reiterated my point. “If you want another reading it is as simply as changing positions. You will get three different readings if you have her lie down, sit up, and stand, with the standing reading being the lowest”. Dr. Segal, appearing not to believe me, said something to the effect of “Let’s see it”. I told them Lori would have to stand for about 2 minutes and then they will get a nice low reading.

Lori stood up and the resident got up to take her BP. About a minute later she took Lori’s BP. As expected (from both Lori and myself) Lori’s BP dropped drastically. The reading was 103 / 52. Both Doctors looked at each other with a strange look on their faces (I couldn’t see Dr Richards’ face but Lori said he looked quite surprised). They stopped talking about lowering Lori’s BP and immediately switched to “What is the Cardiologist doing about this”? We again told them that her treatment is to remove Lori from both BP medicines and keep her on a high salt diet.

At this point it looked to us as though they did not know what to do. Dr. Richards changed the subject with a “ What else do we have to address” type of comment directed to Dr. Segal. Dr. Segal asked Lori what else was going on. Lori told them about the “Pain in the ass” she has been having (the way she put it was quite funny though no-one but me laughed)

Their diagnosis was either Sciatica or Piriformis Syndrome, which is a cause of Sciatica…I think. CLICK HERE FOR LINK  They said Lori’s best option is to go to Rehab for treatment and pain relief. Dr. Richards wrote a prescription for rehab. When Lori asked if there was anything they can do to help alleviate some of the pain now they said “No”. I specifically asked about a cortisone shot (which has offered temporary relief in the past) Dr. Richards replied to Lori with ”You have pain pills at home correct? Just use those”. When Lori pointed out that the pills make her nauseous neither Doctor made any suggestions. When I add Lori’s reluctance to use Vicodin on a daily basis (so she doesn’t become addicted) again there was no response other than “Rehab is the best method”. So, no relief anytime soon I guess.

On his prescription Dr. Richards also put “General Conditioning” as part of the rehab. Dr. Segal suggested Lori start walking and try to get to 2 miles a day before our next visit. Dr. Richards suggested a Stationary Bike and / or Treadmill.  HUH!?! 2 Miles?!? Treadmill?!? Stationary Bike?!? Lori can’t make a sandwich without almost passing out from her low BP.

At that point, both Lori and I knew it was a lost cause. Without speaking we could tell by looking at each other we were on the same page. We both stopped asking questions and just wanted to get the appointment over with. There was one last thing Lori and I both took issue with. As we ended the appointment Dr. Richards asked Dr. Segal “When are we going to have “This Patient” come back. “This Patient”!?! He had her chart right in front of him with Lori’s name all over it. I could see her name from where I was sitting, yet he refers to her as “This Patient”. Unbelievable.

On the ride home we discussed it quite a bit. Right now the plan is to get an appointment with Dr. Peditto to discuss the Sciatica and treatment for it. We also have an appointment with Dr. Kuo (Cardiologist) to discuss and “rehab”. We will follow Dr. Kuo and Dr. Peditto’s advice on both.

As far as going back for our next appointment (3 months from now) it all depends on what we find when we receive our copy of the Doctor’s notes. The Clinic manager said it would take about 10 days for the labs to come back and she will fax us all results and notes at that time. If the notes are good and there appears to be a good understanding of Lori’s conditions and a treatment plan listed then we will probably give them another try. If not we will again be looking for a new set of Doctors.

In the mean time Lori still can’t get comfortable. She took a pain pill. It helps a little. Next stop Dr. Peditto.