No One Should Climb A Mountain Alone

The doctors that are treating me for this very obscure illness are still acting like the 3 Stooges as far as I am concerned. I still have inexplicable swelling in my underarms, which are very painful. My primary doc sent me for an ultrasound, which found nothing, no masses, no cysts, but they swell up like peaches every month or so and it hurts so much that I cannot wear a bra and cannot sleep without pushing pillows under my arms. Despite the negative findings on the ultrasound, my doctor sent me to a general surgeon to have him do exploratory surgery and biopsy. That was a 3 hour round trip... and a waste of precious gas.

The surgeon, who looked to be as old as I am, thought that was a "cockamamy" idea, as there was nothing to biopsy, as the ultrasound showed, and he wouldn't know what to look for. He said he wouldn't know what to tell pathology to look for either. When I asked him why he thought my doc sent me to him, he replied that he thought she "was at her wit's end" with me. It was rather discouraging and I found, as I am beginning to find with some docs, rather patronizing, to say the very, very least.

He didn't charge me for the freaking appointment, but I was still not pleased at the whole charades, as well as my primary care doc, who should have called the surgeon beforehand. The surgeon ended up calling her that day and when I spoke with her office, they had come up with this "theory" that this painful swelling that appeared after I was ill was a HORMONAL thing. Upon speaking to my own GYN, she said it would be very unlikely, and quite extreme if it were. Does anyone know what they are doing?

If the doctor thinks it is hormonal, why did she send me to a surgeon? I asked the nurse from her office. If that were the case, then she shouldn't she be referring me to an endocrinologist, not a general surgeon? This has been going on for 8 months now, and one would assume if she thought it were an endocrine issue, I would have been referred (yet again!) to another doc. I think I need a doctor who is proactive not one guessing about what is going on with me, I added.

I should add that I brought to this same doctor's attention that there was a finding of a 8 cm fibriod in my uterus when a CT was done in February. I had to read the report and bring it to her attention, not vice versa. She invalidated it and said fibriods are common and it was "probably nothing."

I then made an appointment with a GYN, who followed through and did an ultrasound. Guess what? They also found what they think is an endometrial polyp that is just under an inch long and needs to come out. I was floored my doctor was so laid back about this. My GYN says most of the time they are benign, but she wants to take it out and biopsy it to make sure. Now that is follow-through. What is happening to the medical field? Or maybe it is my current health issue that is opening my eyes to it all!

I have decided at this point to switch my primary care doctor.

Also, up to this point, I have been told by rheumatologists and a neurologist that I have fibromyalgia, and that is why I am steadily declining in disability. But when I went to find a rheumatologist to treat me in Maine, I found the one who saw me in March and didn't even know what was wrong with me, wouldn't treat me, because "fibromyalgia is not a disease, it is a condition." I soon found out that there are no rheumatologists in Maine who will treat fibromyalgia or chronic fatigue syndrome, they just diagnose it and rule it out from other rheumatological diseases, like RA and lupus, and send you back to your primary care, who usually does not know what to do with your symtoms.

My rheumatologist in Boston's Mass General thought this was "passing the buck" because fibro/CFS is so difficult to treat. The docs here in Maine, in his opinion, are washing their hands of it because they don't want to deal with the myriad of symptoms and the trial and error of meds the patients have to go through before they see results.

If I do have Fibromyalgia and Chronic Fatigue Syndrome, I have to go out of state to someone who knows what they are doing, otherwise, my choice is my primary care doctor, who wanted me to try 2 medications I have already been on for fibromyalgia, which have not worked and have terrible side effects.

So as of last week, I stopped all the meds they threw at me, and I am just going to acupuncture, which has done wonders. I have a lot of faith in alternative medicine and find that in the right conjunction with Western medicine (if it's the right treatment) wonderful results can happen!


I did go to Mass General yesterday to the Director of Pulmonary and Critical Care. I stayed overnight at my brother and sister-in-law's, and my mom traveled with me. When we got into Boston, we walked through the garage to the street, and my left leg had already given out. Thank God there were all these wheelchairs at the other side of the street with MGH crossguards. He took one look at me, rushed over with a chair, and wheeled me all the way in. I couldn't thank him enough, as my mom didn't know whether to cross the street to get the wheelchair while leaving me to possibly collapse, or wait on the other side and hope one of these guys would see us.

So after we made it to the appointment, I had a series of breathing tests, and while doing my second run, got light-headed, disoriented, started seeing spots, felt faint, then lost complete use of my legs. I could not get enough strength from my legs to push myself from the testing booth to the wheelchair. The nurses were helping me, but I was dead weight. Finally I just used all my upper body strength to get into the wheelchair and they wheeled me into another room.

After another fiasco of trying to get onto a bed - with two people helping, and me coming out of my disorientation, I soon realized I had no use of my legs at all. My eyes just welled up and I couldn't believe what was going on. This extreme temporary paralysis had NEVER happened before. When they did some neurological testing, I could not lift either leg up from a laying position. I had no strength pushing my feet up when the doc's hand rested on the top for resistance. I had a hard time putting my finger from my nose to the doc's finger less than a foot away, the movement was very slow, and I could not place where his finger was in space to touch my fingertip with his. It was even worse when he moved it several times.

The worst of it was the ticking and jolting of my legs when I was resting. It was like the nerves were misfiring and my legs had a mind of their own. Spasming and ticking, twitching and contracting, it was like they had mini-seizures. They have been doing this for 2 days now, and now I know when they are about to jump, as there is a small contraction first coming from my low back.

As I write this, my low back is in severe pain from all the contacting. I have taken a muscle relaxer and they have calmed down from jolting from once every 5 seconds to once every 30 seconds. That in itself, not even thinking about the fact that I can't walk at the moment, is the most distressing part of this right now, the constant twitching.

The doc also had me "walk" with one doc on each side of me. I have never had such extreme and disabling symptoms before, but I was glad to at least be in such an excellent hospital while it was happening, getting connected with doctors who would not be just shrugging their shoulders and sending me home, like all my ER visits in the past 8 months. What really was the catalyst for this was the breathing test, and I wish they could connect the dots.

The lead doc asked me to stand with my feet together and close my eyes. I guess I failed that test too, I was swaying all over the place and felt like I was going to fall. I also could not take the heel of my foot and run it down the opposite leg, starting from my knee going down my shin to the ankle. When doing this on both sides, the movement, which should have been smooth, was jerky and inconsistent. I repeated this for the doctor several times. I still cannot do this to my amazement. The neurologist at Maine Neurology never did this particular test on me. He just told me it was fibromylgia - and "fibromyalgia can do anything" which still echoes through my ears.

My mom and I were there at Mass General from 8am to 1pm. The Director of Pulmonary is hooking me up with an excellent doctor who not only is a neurologist but specializes in ataxia. Dr. Systrom, the Director of Pulmonary and Critical Care, suspects neuro-muscular stuff - not cardiopulmonary issues. So, the fibromyalgia at this point is not suspect, which would have to be incredibly severe and unusual for it to fit in this category.

After he examined me, Dr. Systrom said that he was not a "betting man", but if he had to guess, he would bet all his chips into a select few neuromuscular diseases, and that he pretty much knew what was going on with me - and my eyes just welled up. He was very compassionate, with a kind looking face, and then said he was sorry I've had to go through what I have been going through, but he that he knew a doc who he completely recommended. He tried to get that same doc to see me while I was there, but then after he talked to him, but it just didn't happen with the schedule he had. Dr. Systrom also said was sorry to hear I've had so many poor medical experiences in Maine, especially the last neurologist who refused to do a lumbar puncture, which is so important in diagnosing what is going on. When he left the room, I just balled for a minute or two while my mom hugged me. It was a total release, and relief that someone KNEW what was happening to me, and I was going to see the right people who were not going to pass the buck any longer.

Today I looked at the possibility of getting a walker when I get this bad. Going to my acupuncturist tomorrow, if I can make it... Left leg is pretty numb sometimes and I have problems balancing. My step-dad had to pull me up the last bit of stairs by my arms tonight, as my legs could not push me up. I will sleep downstairs tomorrow if I'm in this condition then. Some days are good and others just plain aren't.

My lesson: No one should climb a mountain alone.