Deflated

I'm still processing the visit I had on the 22nd with a neuromuscular specialist and the rehab doc that works with hhim. Their office had called my doc after she had been trying to reach him. They gave her a specific appointment for me to see both MDs. My husband rescheduled surgeries that he had planned for thhat day so he could come with me. We brought some photos that showed the asymmetry between my shoulders and the muscle imbalance between my upper traps and the shoulder girdle itself. These are not subtle, nonmedical people can easily spot the problem areas. In the past not a single neurologist has actually taken the gown down to look at my upper body as a block. Instead they "peek" here and there as they shift the gown, heaven forbid they see me in my bra. My husband is an OB and I care for a wide range of patients so we wonder what the big deal is about seeing me undressed. Same thing happened this time so I was glad we hhad the pics until the neuro admitted that he didn't see any asymmetry and the other said he saw it but it was just tthe normal asymmetry we all have. We pointed out to him that I didn't look like this last year and that it's progressing despite trying to rehab my shoulders for the past 7 months. In that time I've been doing the exercises ordered by the orthopedist who diagnosed my shoulder weakness and impingement syndrome. This rehab includes floor type work taught to me by my PT and weight lifting on my home gym. I was very faithful to this program, missing lifting days only when I was on vacation, yet I hadn't made any significant progress. If I was truly ok from a neuro perspective those muscles should have responded to the rehab. We also mentioned that the asymmetry was occurring only in areas where I had complained of weakness and the smaller side was always the weaker of the two. The rehab doc didn't think this coincidence represented anything. This logic, or lack of it, baffles us. The rehab doc had me try to rise from a chair using only one leg. This did demonstrate that the right hip extensors are not up to the task and I've been telling them that this side has been a problem from the outset. He said it just meant that I wasn't working this side hard enough. I was very active before this illnesss struck me (see previous blogs) so I'm puzzled as to why it got weak in the first place. Also, I've been walking for at least 30 min 6 days a week and doing leg presses, knee extensions, and hams for the past 9 months so why wasn't that helping the right side? I hosted my bridge group on the evening of the 22nd and everyone else, except the 71 yo with the knee replacement, was able to do thhe chair exercise with either leg. It's hard to explain why those less active than I can do physical tasks that I can't do if we are all equally intact.
Yet, these two docs think I'm ok. My partners are in a state of disbelief. They've seen me change and can't belief how my observations and concerns are brushed off. Neuros apparently do this because the EMGs have been normal. I tried to suggest that this would always be the case as I think thhis is a central nervous system problem and EMGs will be normal in such cases. A central problem would explain the autonomic neuropathy, the neuropathic pain that responds well to Neurontin and the muscle weakness. It would also explain the word searching and mis-speaking that I and my family have noticed in the past few months. I haven't mentioned thosee symptoms to this neuromuscular specialist because I feel that he would consider those problems to be further evidence of a psychosomatic disorder. So much for a therapeutic relationship built on trust and mutual respect. When I raised my suspicion that my problem originated in my brain it was brushed off because my MRI in Aug. 2003 was normal. Parkinson's is a central problem and I'm not aware of any MRI changes in that illness so his reasoning is a bit flawed. I sense he doesn't want to consider unusual diagnostic possibilities.
I see the POTS specialist, Dr. Blair Grubb, next week and I'll ask if he knows anyone who might be interested in my case. I'll bring a set of photos for him to review and pass on. My husband really thinks that Blair will further our quest but I have my doubts, having been rebuked so many timmes. One can only bang their head against the wall so many times.

All Hell Broke Loose in Feb., 2003

I had 5 blissful weeks of being my old self again. My energy and strength were back and the pain in my hands and feet was barely perceptible. Work was great because I could do all of my ususal tassks effortlessly. Things changed in very late Jan. The pain was back and worse than before. I was tired and having lots of what I thought to be episodes of PSVT. I had had a few in Dec. 2002 but they were brief. These actually made me dizzy and I would have to sit for 20 secs. or so before things cleared. In early Feb I noticed that I was having fasciculations in the same areas of mmy hands and feet where I had my pain. My annual exam was coming up soon so I just carried on until that visit. My family doc promptly referred me to a local neurologist who felt I was weak. He did an EMG which he thought showed some subtle changes so he referred me to the U of M. The specialist did a cursory exam, gave me a verbal pat on the head and told me I was fine. Funny, I felt crappy and was so cold I kept myself wrapped in an electric blanket. Through this stage I continued to walk but only 1 mile and at times it was sheer willpower that propelled me out the door. My husband once asked why I didn't take a break since it was such a struggle but I knew that one day off could turn into many and eventually this would make me even weaker.
I missed 8 days of work, more than I missed giving birth to my first child. When I returned I worked 2 hours, slept on my office floor for 1 hour (still using the electric blanket), worked another hour and then went home to sleep. I came back in the evening to dictate. Two weeks into this routine I received a copy of the note from my visit at the U. The doc must of been having a bad day because he missed the fact that I was having muscle pain at rest,fasciculations and fatigue. Pretty big items to miss in the history but it did explain why he was so casual about my concerns. This visit not only wasted my time but also saddled me with whhat I call "the curse of the super-specialist". Going forward many neurologists referred to the fact that I saw Dr. X and he thought I was ok. Explaining that he did a poor job in taking my history, did very little examing and no testing fell on deaf ears. Who was I (besides a patient and fellow MD married to an MD) to challenge his assessment? For the first time I began to fully understand what patients are trying to express when they state that "they hate docs". They hate our inability or unwillingness to truly hear them, they hate our reluctance to question the exams/diagnoses of other MDs, they hate our tendency to be arrogant when challenged by patients. "Doc, I really hate doctors, not you, sometimes". "Yeah, I hear you on that one."

I've decided to not correct the words where letters are duplicated due to my inability to release the key quickly, perhaps thee patterns of my errors will mean something to someone reading this.

How it All Started

I like to spend time on Sundays doing the paperwork that comes with being a family doc. The office is quiet and I can listen to music more interesting than muzac while I write letters to patients explaining their recent lab or Xray results. On the first Sunday in Nov,2002 I was trying to do this when I noticed that my hand was cramping and with continued writing my entire arm became involved. I tried taking a break but when I came back to the task my arm cramped up quite quickly. My feet were also causing problems, they ached along the outside of the foot and at the arch. Stretches for the plantar fascia didn't help. Within days I developed severe fatigue to the point that I stopped going to evening meetings and needed to nap after work. In mid-Nov I had to do a difficult 3 am delivery using a vacuum. It took all I had to pull the baby out and my arms ached; usually 2-3 pulls does the trick and it doesn't require so much effort. My arms/shoulders were sore for days. My hands and feet continued to ache and it seemed that heat helped more than NSAIDS like ibuprofen. A hand therapist made me some splints that kept my thumb at a fixed distance from the palm and this did cut down on the hand cramps. I had to quit lifting because I couldn't tolerate grasping the bar or hand grips. I continued to walk 2 miles but I found that draining. By mid-Dec. my shoulders also hurt so I was referred for eval of possible RA and fibromyalgia. The eval was negative for both but a PT pointed out that my R glut medius was weak and that my pecs were too tight. This baffled me. My lat glut area had been a problem for months when I walked long distances or climbed stairs but I thought it was just an annoying case of bursitis and took 800mg of ibuprrofen when it really bugged me. Now I had actual weakness, how odd given my level of activity. I was given strengthening exercises for the glut and stretches for the pecs.
My situation was really worrying me and my husband because I was usually so strong and not one to be bothered by little things. These weren't little complaints and my energy was so low that I only had enough drive to get to and from work. I didn't decorate, bake or send cards for Christmas which signaled how bad I felt. Thankfully, I didn't have anyone due in Dec because I wasn't sure that I could do a difficult delivery if need be.
Miraculously, on Dec 23 I woke and felt great. The pain in my hands and feet was almost completely gone and my energy was back to its usual high level. We aren't ones to wear our religion on our sleeves but we did tell family and a few friends that it seemed that I had had a Christmas miracle. We even thought about sending our cards late to tell the story to others. What a joy it was to be myself again.

Early wasting of right VMO 

Left trap hypertrophy with shoulder girdle wasting 

Bilateral foot thinning. 

Note thenar wasting which is worse on the left. Loss of intrinsic muscles make flexor tendons easily visable. 

A picture is worth a thousand words

I had planned to tell my story in a sequential manner but life isn't always neat and ordered so why should I be any different? Kate(my daughter) was coming up to get the tires on her car changed for winter and I asked her to bring her digital camera. One of my road blocks in getting my problem diagnosed is that physicians can be too reliant on tests and some have let their clinical skills decline. When I practiced in Guam for 3 years we didn't even have echocardiograms so my ability to hear murmurs needed to be sharp otherwise I'd be sending patients on costly trips to Hawaii for the test. Rheumatic fever is fairly common in Guam so evaluating murmurs was an important task. I seek someone with similarly honed neuroclinical skills.
My medical problem is one of pain, weakness,irritability and, now, atrophy in various muscle groups. The latter is apparent on visual inspection, the trick is getting docs to really look. The thinness of my hands and feet is new and they don't match the rest of my frame. My left trapezius is hypertrophied to make up for the atrophy of my left shoulder girdle muscles. I see this every day in my bathroom mirror as I wash but showing others is a challenge. Clothes, including patient gowns, can hide a myriad of physical imperfections (thank God for long skirts). When I'm the patient it seems like physicians are loathe to look under the gown. My own doc has and she can easily see the difference. Others try to slide up the sleeve or cautiously open the back but that doesn't tell the story. That's where Kate and her camera came in- I decided to document on film what my body looks like so others can see what I see.
I'm sorry in some ways that Kate had to do the photography. She's busy with her senior year of college, mothering a toddler, and planning her wedding. That's a lot to handle at 21 and now I've added to her plate by letting her see so clearly the changes in my body. She had already been out of the house when I got sick so in some ways my illness was an abstraction to her- she was aware that I had limits to what I could do but I had tailored my activities with her to keep the problems from interfering with our plans. As we stood in the bathroom she saw my neck and upper back in a new light and it was distressing to her. Sometimes life is painful.
I'll put up the photos soon.

Here I Go

I still have a hard time believing that I'm starting a blog as a means to get a diagnosis. My clinic colleagues will be surprised by this approach. I have no idea what my patients will think. They've been so supportive of me during my medical leave and slow return to part-time practice that I doubt they'll have any objections. I would hope that this doesn't cause them to lose faith in our entire medical system because I'm definitely a piece of that system and generally proud of level of care we have in the US.
I've been ill since Nov. 2002. Before getting sick I worked full-time at my clinic and did lots of prenatal care and deliveries. My c-section rate was very low and I was proud of the care I offered to all of my patients. I tried to give people the type of care I would want for my family members, including my brothers who are uncomfortable when visiting doctors. I was respectful of their time, concerns and wishes while not compromising what I considered to be quality,evidence-based, medical care. I put a lot of effort into the patient-doctor relationship and felt rewarded when my patients greeted me out in our community. I was very physically active. I walked 2 miles daily, lifted weights on my home gym on even days of the month, water skied in the summer and cross country skied in the winter. I enjoyed biking. I was tough- I generally came from the "suck it up and go on" school of thought (I didn't ask this of my patients, however). Our kids were born when my husband and I were in medical school and residency and we were well beyond the stressful years when my problem started.
When I came down with this malady I expected the same type of care that I gladly gave my patients. My family doc has done her job but I've found many of the medical specialists to be lacking. Several have not been careful historians or thorough examiners. Few seem interested in digging into the unusual circumstances of my case. The neurologists, as a group, have been the most disappointing. This presents a major obstacle as the other specialists do see clinically identifiable problems which they believe are neurological in origin. Routine neuro tests, and there have been many of them, have been normal. To the neuros this seems to negate the exam findings. I believe it simply means that we are not using the right tests. Maybe there isn't a test for the problem but they should state that instead of implying that my observations/complaints aren't valid. They might try to write me off as "nuts" but that would imply a group psychosis as other MDs continue to document a decline in my status.
In primary care we frequently run into problems we can't solve and most of us can freely admit this to patients. Often we refer the patient on in the hopes that a specialist can see the pattern that we've missed. I don't wash my hands of the patient when I do that. I usually communicate with the specialist as to why I'm sending the patient and I read any info I receive back from the consulting physician. If I'm left out of the loop I frequently try to find out what happened to the patient. It seems that this tiered referral practice might place an unique burden on the specialists as the expectation is that they'll figure things out. Most of the time they do identify the problem and successfully treat the patient. When they can't do this patients can easily be lost to the system. I'm one of the lost and it has been a frustrating experience.
In upcoming segments I'll define the specifics of my case. I'll also offer examples of what can be done on a small scale to make major improvements in patient care.