Visiting a New Doctor's Office

Earlier this week I was meeting a new rheumatologist to possibly replace my doctor who has retired. Ahead of time I picked a few questions to help determine if we might be a good fit. But I was also quietly evaluating the office and its staff – from the logistics of parking, to the receptionist and nurses, and the efficiency of the visit overall.

After negotiating the confusing parking lot and navigating my way through the building to the office, it didn’t take long to get checked in. I was a few minutes early so I read email on my phone and worked a monster Sudoku puzzle. After about 20 minutes, I made eye contact with another patient and we started a brief conversation.

I asked her: How long does it normally take before you’re called back for your appointment? She gave me a sheepish look, so I encouraged her – no, honestly, how long does it take? She said that sometimes it’s “not too long” but that it was an hour for a recent appointment. She asked if I had been waiting long, which I had not, but I noticed that no one had been called back during the 20 minutes I had been waiting and the number of people in the waiting area was growing. (I ended up waiting 30 minutes.)

Not long after this discussion a woman came in and approached the registration desk. She wanted a copy of her lab results and to talk to “whomever it is that usually calls with test results.” The girl at the desk said that person could be any one of them, depending. The previous Friday, the woman had received a phone message regarding lab work and was confused about instructions given to change her medication. She had been trying to call the office all morning and couldn’t get through so she drove up to the office instead.

Based on the conversation, it became apparent that the woman wanted to understand a few basic things: what was abnormal about her lab results, what was the significance of specific tests, why was she being asked to change her meds, what was that supposed to do, and how would she know if the change successfully accomplished what the doctor wanted?

She was obviously concerned and somewhat confused. But rather than offer to let her talk to the nurse, the receptionist responded to her questions with superficial answers that didn’t explain much of anything. I wanted so much to be able to interpret for her what was being said. Her liver enzymes were elevated which is why her doctor wanted her to only take 2 methotrexate tablets that week instead of her usual dose. The patient also wanted to know about SED rate and a few other tests. Her questions had answers, but probably not ones which should have come from a receptionist.


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Evaluating the Doctor's Office: Who Do You Talk To About Laboratory Results?

Much Too Loud!!

Too loud!

Hyperacusis is commonly defined as a heightened, abnormal sensitivity or intolerance to ordinary, everyday sounds that would not bother most people. That means what may sound normal and completely acceptable to you may be perceived as outrageously LOUD and painful to me. People who experience hyperacusis (about 8-15 percent of the general population) often also have tinnitus (ringing in the ears).

Hyperacusis affects people to varying degrees, from mild to severe, and is different than phonophobia (fear of sound) or misophonia (dislike of sound) which usually involve emotional response to specific sounds. People with hearing loss who experience loudness recruitment (an abnormal growth in the perception of loudness) may also experience hyperacusis, but not always.

Although hyperacusis has many known causes and associations, most cases have no known cause. A few diseases and syndromes that are associated with hyperacusis, include migraine, depression, post-traumatic stress disorder, head injury, Lyme disease, Williams syndrome, fibromyalgia, Addison’s disease, autism, myasthenia gravis, and middle cerebral aneurysm. Research suggests that hyperacusis may also be associated with multiple sclerosis.

Not all hyperacusis is the same

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Do You Think Normal Sounds Are Loud, Painful, or Annoying?

Cell-based Therapy and Multiple Sclerosis

Stem cell therapy itself is not entirely new, but use in MS is still experimental and no therapies have been approved in the United States. There are important ongoing clinical trials in the US and a number of patients have traveled abroad to receive treatment. Patients need to be cautious, however, because of the numerous bogus and unscrupulous “stem cell clinics” who heavily recruit patients for their treatments.

What is cell-based therapy?
“Cell-based therapy” refers to the transplantation, delivery or stimulation of various cell types for the purpose of treating MS. It is important to know that there are a variety of cell-based therapies used in MS. To discuss the state of stem-cell research, more than 70 experts convened a meeting - the International Conference on Cell-Based Therapy for Multiple Sclerosis - held in Lisbon and hosted by the National MS Society, ECTRIMS, and Multiple Sclerosis International Federation (MSIF). Progress was reviewed related to the value of specific cell types, including hematopoietic stems cells (derived from the bone marrow), mesenchymal stem cells (derived from many different adult tissues), and oligodendrocyte precursor cells (derived from multiple sources).

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Stem Cell Research and MS

Urinary Urgency and MS

For some reason, standing still for a brief period of time makes the situation worse. It seems that if I pause long enough to clinch my legs together, then the next time they relax – for example, in order for me to take a few steps – the muscles holding back the urine relax too and Lisa ends up with soaked underwear and most likely very wet pants.

Losing the ability to control the flow of urine is a common dysfunction in MS. So are problems with storage of urine, emptying of the bladder, or a combination of problems caused by detrusor-external sphincter dyssynergia (DESD) which is a lack of coordination between the different muscle groups that independently control storage and flow.

It is important to talk to your neurologist about any problems you are having with bladder functions. There are treatments which may help to reduce complications. But one thing you should NOT do if you are worried about incontinence is to dramatically limit fluid intake. You need to drink plenty of water to stay appropriately hydrated and to avoid aggravating bowel problems which can often accompany bladder problems.

For me, the onset of bladder problems coincided with a period of time where my MS was progressing somewhat rapidly. I was having several relapses with limited recovery in between. This was years ago, however.

Now, when I begin to have bladder issues, it is often because of a blossoming urinary tract infection or poor attention to my body’s needs on my part. I’ve learned that if the random thought of the bathroom crosses my mind I should act upon it, even if I don’t physically feel the need to go to the restroom…yet. I may not be able to FEEL my need, but my brain is trying to subtly warn me in advance that we’re going to have to make a move soon.

What’s your experience with bladder problems? Are there strategies that you employ to try to manage or prevent problems when you are out and about?

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Pardon Me, Excuse Me, I've Really Got to GO NOW!

Ways To Connect With The MS Community

3. MS research
One of the first things my neurologist recommended after diagnosis was for me to sign-up for an MS patient registry that conducts longitudinal research through simple surveys. Two of the most prominent patient-based research initiatives in the US are iConquerMS™ which is patient-governed and sponsored by the Accelerated Cure Project (ACP), a non-profit organization in Boston dedicated to research, and the NARCOMS project which is run by the Consortium of MS Centers (CMSC).

4. MS publications
NMSS, MSF, and Multiple Sclerosis Association of America (MSAA) publish quarterly or bi-annual magazines that are delivered to your home. It’s as easy as signing-up. These magazines and select articles can also be viewed online in digital format which is great, especially if you want to share specific information with family and friends and you can link directly to the source. These organizations have also created large libraries of brochures on topics related to practically every aspect of living with MS.

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5 Wayst to Get Involved in the MS Community

Stable MRI: Unremarkable and Grossly Normal

Unchanged, grossly normal, unremarkable —– These are some of my favorite words that were included in my most recent MRI report. Very good news. It confirms that my MS has remained stable for another year.

I have been very fortunate. In fact I haven’t had a BIG, steroids-required, symptoms-out-of-control relapse in four years. When I think back to the last one I realize what a difference four years and a minor change in treatment philosophy makes.

Back in 2011, I had a lot of health issues going on and I was suffering from ‘doctor fatigue’ – that feeling you’ve had too many doctor’s appointments and you’re tired of making ‘medical care’ your full-time job and not enough time to take care of yourself.

When I blogged about ‘doctor fatigue’ in 2011, these were some of the things I talked about: 1) failing to schedule an appointment with my rheumatologist in the summer, 2) skipping routine blood monitoring, and 3) not calling the office when I experienced flares. When I finally did schedule an appointment, it was to schedule Rituxan infusions.

At the time, we were waiting to schedule infusions until AFTER I began to experience the return of symptoms (of MS or RA) and I was trying to tough it out. That November, I experienced an MS relapse that affected my walking ability with increased weakness and numbness in my limbs and severe fatigue. A round of solumedrol reduced both my MS and RA symptoms. It was at this point my doctors and I decided that I should try to schedule Rituxan infusions BEFORE symptoms began to return or relapses or flares occurred.

Fast forward to this fall at the end of a very busy string of medical visits and I get good news that reinforces our decision to continue Rituxan infusions every 6 months was the right choice. Rituxan (rituximab) is a B-cell depleting therapy that is used for a variety of conditions including lymphoma and rheumatoid arthritis. Recent trials with a drug that works in the same way, ocrelizumab, showed effectiveness against MS.

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Happy To Be Unremarkable

From Sensory Symptoms to Motor Symptoms: The Most Common Symptoms of MS

Multiple sclerosis is a disease of the central nervous system (CNS) with symptoms that can affect almost anything from head to toes. The disease is so variable that no two people with MS are likely to have exactly the same combination of symptoms. As MS symptoms mimic dozens of other conditions, it is also important to consider that this list is not exclusive to MS.

Here are 50 of the most common MS symptoms:
Sensory problems

• Abnormal sensations (dysesthesias)
• Numbness, tingling, burning, or tightness  
• Pins and needles
• Severe itchiness (pruritus)  
• Hypersensitivity to touch
• Pain - acute or chronic, mild to severe 
• Loss of proprioception (sense of body position in space)
• Inability to detect vibrations
• Impaired sense of taste or smell
• Trigeminal neuralgia - stabbing pain in the face
• L’Hermitte’s sign - electrical shock-like sensation running down the spine and into the limbs when you bend your neck forward or backward 
• The MS hug

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Top 50 Symptoms of Multiple Sclerosis