I was going through some old medical files that I had accumulated from when I was trying to figure out what was wrong with my hip. It was a very interesting list - I wrote down some things that might fit:
?Myofascial pain syndrome (neuromuscular disease; affects fascia; trigger points)
treated with PT, massage therapy, trigger point injection
?RA (inflammation of joint and tissue around joints; auto immune disease
?polyenthosopathy
-pinched nerve in cervical spine? feels like pinching/pressure in neck and shoots down right side of body
-Ehlers Danlos Syndrome -unstable joints; dislocating shoulder
What I find most interesting about this list is that I a)had this pain in my neck and arm longer than I can remember, it just wasn't as constant, and b) I think I am more qualified than most doctors. No doctor had mentioned anything about Myofascial pain until quite recently, and that was only because it was a physio in Holland. I knew I didn't have RA as I've never tested positive for it, but I guess I wanted to cover all bases. I was diagnosed w/ EDS after this, by a genetic doctor. And now I have been diagnosed with herniated, bulging discs and stenosis. I really should be a doctor.
Yes, I'm going to rant. And then rant some more. My major problem with the medical system in this country, well, one of them, is that all doctors are trained in parts. There is no doctor that I have found - if you know of one please tell me - that treats a body as a WHOLE. You have to go to a million different types of doctors that specialise in very specific things, and whilst that is good on one level, it is bad when they forget that that part of the body they focus on is actually CONNECTED to the rest of your body!
Where is this all going you ask? Well I had my appointment on Monday with the neurologist, Dr. Fatimi. Please don't go to her, she is dafter than a plank of wood. Perhaps she is just too young and clueless but she really doesn't have any idea what she's doing. My mother came with me to this appointment as I was to have the EMG test. Once we finally got into her office, she said - I thought you were going to have the EMG already? I couldn't believe it. I explained to her how I had had a whole long conversation with her assistants and we rescheduled the visit and the test to that day, from the 3rd. She said yes, I saw you were scheduled and you didn't come. I had to explain that I received a call from her office whilst I was away, and as I didn't return until midnight on the 2nd, I could not ring her office until the morning of the 3rd, and then tell the office that the appointment had been cancelled and rescheduled, which they said oh yeah, we have you for the 17th, for some reason it was still on the 3rd as well. This has to be one of the most disorganised offices ever. It drives me barmy. She didn't apologise or anything. Finally she arranged for the test to be done then, after she kept us waiting in the test room for ever. She didn't really explain what was going to happen, thankfully I had done my research, and did the electrode part first. They write on you for the measurements and then stick electrodes on you and zap you with electricity. This is not fun. I was trying to stay calm. It was extremely painful. Then it got worse, she did the needles. It was like medieval torture but with electricity. At one point she stuck a needle in my hand, in a v. sensitive post-surgery area of my hand that is extremely sensitive, and I lost it. She didn't warn me when she was going to do it or where, and just randomly kept stabbing and zapping. I hope whomever is reading this never has to have this test, but I won't lie. It was horrific.
After she was done, she said - wow you're so sensitive. Gee, a normal person would be in pain, but factor in the fact that I have fibromyalgia and my brain processes pain differently, then of course I was sensitive! That's what I mean about her - completely daft.
We then reviewed my MRI where she didn't even mention half of what the report said, until I brought it up. She then said she thought PT would work and gave me a prescription for that. I had brought along copies of some articles I had read about myofascial pain and dry needling, and gave them to her and explained that I believe (as my chiro does) that I have myofascial trigger points and that they need to be worked out before any PT can be done, because you can't strengthen a muscle that has a trigger point in it. I swear this went in one ear and out the other, then she seemed bothered that I was talking, wrote down the name a physiatrist, and said that I would need to talk to that person about treatment as she doesn't know anything else. What kind of doctor is that? Definitely not the kind that is concerned about a patient. I understand that with the way insurance is set up it is not to benefit the dr or the patient and they all have their numbers to do so they can make money, but if you don't want to treat patients then you shouldn't be a doctor. Period, case closed, regardless of the money. I have been to too many doctors to put up with this kind of crap. I am so fortunate that my primary, Dr. Rosen, takes the time out to talk to me, answer my calls, look into things when I need her to if it's something I can't do myself. And yes, I'm spoiled, but that is what a doctor should be like.
Ok, well, enough about that, sorry, I am just so frustrated.
After the lovely EMG I was in a lot of pain, stabbing, stinging pain. We had some wine and I thought I would be fine by the morning. But I was wrong. I woke up and could barely move my hand and everything was hyper-reactive in my body. The test inflamed everything and set me off down another spiral of bad pain all over my right side. I couldn't even go to work. Yesterday I was still pretty bad, and then I went to the chiro at lunch. He couldn't believe how tight my neck/shoulder area was and said there was a lot of Myofascial stuff going on. So I'm going to see him again tomorrow.
I did make an appointment with a physiatrist, Andre Panagos, at NY Pres who does dry needling, but it's not until the 29th. I heard back from Norman Marcus' office and will see about possibly going there. He doesn't take insurance and the first visit is $465, which I guess is better than $1200. I still can't get over that one!
So, onwards and upwards. My head is spinning from all of this and throbbing as well.
Showing posts with label EMG. Show all posts
Showing posts with label EMG. Show all posts
20 November, 2008
13 November, 2008
Calling for help
I've been busy researching dry needling in NYC and writing letters to any organisation that might have a clue as to what direction to point me, since none of my doctors are familiar with it. I just sent this email to the International Myopain Society:
"Hi. I was recently in Holland visiting a friend and she took me to her physio as I was in a lot of pain. Recently I had an MRI that showed disc bulging, herniated discs and stenosis in my cervical spine. I was sent to a neurologist who sent me for the MRI because I had constant pins and needles shooting down my right arm.
I also have EDS - hypermobility, fibromyalgia, TMJ, mild scoliosis and more things I probably can't remember at this moment. I have also had 4 reconstructive hand surgeries, and hip surgery to deal with a torn labrum, psoas release and FAI.
Anyway, I went to see this brilliant physio, Remco, in Den Haag and he did some traction on my neck, adjusted C2 for the TMJ and also adjusted my lower back and did dry needling in my trapezius muscle. It was the first time since the constant pins and needles started that I had relief. I didn't have them for 4 days, and it is still much less than it was.
The thing is, I really need to find someone who can work on me here. I have a chiro, but he's not allowed to do much else other than electric stim and massage and stretching. That helps, but only mildly. I was hoping that you would be able to recommend someone in Manhattan that works with my kind of mess of a body and does dry needling.
If you would I'd so appreciate it.
Thank you very much for your time."
Yes I am desperate! I am hoping someone will respond from one of my cries for help and tell me they know someone in the area. I did find this Dutch-trained physio who would be perfect, but of course he A) is in Bethesda, MD and B) doesn't take insurance. Part of me wants to go down to see him anyway, and he lives close to my aunt and uncle, so...I may just have to. I think I will send him an email as well. His name is Jan Dommerholt and he sounds brilliant.
I go for the EMG test on Monday, my mother is coming with me. Yes, I'm a baby, but I don't fancy someone sticking needles into me and then electrocuting me. We shall see what the darling neurologist has to say about my reports then as well. I have no faith in her at this point, but will bring my research and show her, after she says her opinion.
At present, the neck and back hurt, plus the usual "it's high humidity and low pressure" fibro crap, so going to go to the PT pool after work and hopefully it will be quiet and empty and I can just relax in there for a while.
"Hi. I was recently in Holland visiting a friend and she took me to her physio as I was in a lot of pain. Recently I had an MRI that showed disc bulging, herniated discs and stenosis in my cervical spine. I was sent to a neurologist who sent me for the MRI because I had constant pins and needles shooting down my right arm.
I also have EDS - hypermobility, fibromyalgia, TMJ, mild scoliosis and more things I probably can't remember at this moment. I have also had 4 reconstructive hand surgeries, and hip surgery to deal with a torn labrum, psoas release and FAI.
Anyway, I went to see this brilliant physio, Remco, in Den Haag and he did some traction on my neck, adjusted C2 for the TMJ and also adjusted my lower back and did dry needling in my trapezius muscle. It was the first time since the constant pins and needles started that I had relief. I didn't have them for 4 days, and it is still much less than it was.
The thing is, I really need to find someone who can work on me here. I have a chiro, but he's not allowed to do much else other than electric stim and massage and stretching. That helps, but only mildly. I was hoping that you would be able to recommend someone in Manhattan that works with my kind of mess of a body and does dry needling.
If you would I'd so appreciate it.
Thank you very much for your time."
Yes I am desperate! I am hoping someone will respond from one of my cries for help and tell me they know someone in the area. I did find this Dutch-trained physio who would be perfect, but of course he A) is in Bethesda, MD and B) doesn't take insurance. Part of me wants to go down to see him anyway, and he lives close to my aunt and uncle, so...I may just have to. I think I will send him an email as well. His name is Jan Dommerholt and he sounds brilliant.
I go for the EMG test on Monday, my mother is coming with me. Yes, I'm a baby, but I don't fancy someone sticking needles into me and then electrocuting me. We shall see what the darling neurologist has to say about my reports then as well. I have no faith in her at this point, but will bring my research and show her, after she says her opinion.
At present, the neck and back hurt, plus the usual "it's high humidity and low pressure" fibro crap, so going to go to the PT pool after work and hopefully it will be quiet and empty and I can just relax in there for a while.
07 October, 2008
M.I.A.
Yes I've been MIA for quite some time now. From mid-August till the beginning of September I was in my own world. I just didn't have the energy to deal with everything going on. I will give a quick recap for the past few weeks:
18-24 August: went to pool 3x that week, and cut my hair off. I needed a change in so many ways, and that one was the easiest! Then again, I didn't really have much of a say. Avi, my hairdresser, decided I was long overdue, and well, there is no arguing with him. That weekend I was out pre-celebrating my birthday, which I overdid - way too much. You don't realise how that sangria hits you until it's too too late. Had an appointment with Dr. A, to check my wound - he said it was ok but the day before it didn't look so ok.
25-31 August: was good again and did pool 3x. Continued to celebrate within reason for the most part, until the weekend. Oops. I did do some samba dancing though which I thought was quite impressive for my hip. The hip let me enjoy myself for a bit and then decided it was time to sit back down. But still, no long term suffering which was a v. good thing.
1-7 September: pool 2x that week. Yet another appointment with Dr. A to check the wound that would not heal. He says it was doing okay, even though I was in more pain than I had been in for a few weeks (not counting the cauterization).
8-14 September: Big accomplishment - I biked from my flat to BB&B, which is a little over 2 miles. I was very proud of the hip, it held up quite nicely, even with a few inclines that were on First Ave. Pool again 3x.
15-21 September: Pool only 2x this week. I had to go to the dentist to have a crown made for my last root canal, the one that went horribly wrong. Yes, it was almost a year ago, but after all that agony I was quite happy to not have anyone muck up my mouth again. It was agony and then I had to stay for a cleaning as well. Thankfully I took half a pain pill beforehand so that helped a little bit. My TMJ was a mess for the week after, and still is a bit now come to think of it.
22-28 September: very bad - didn't go to the pool all week. To be fair, Thursday night I had a pretty bad onset of my FMS and by the weekend was almost completely bed/couch bound. Between my exhaustion and stress and the weather I felt absolutely dreadful. I did somehow manage to pull it together enough to make challah on Sunday though. Not quite sure how I pulled that off, but I was determined.
29-30 September - 5 October: pool 2x this week. It was difficult with all the running around back and forth to the island for the holidays, and then again on the weekend for the dentist. I had my crown fitted and also decided to get a night guard as my teeth seem to be catching the brunt of my nighttime grinding. Hopefully this one will be better than the one I had ages ago and it will do some good. It sure costs enough! But to add to the excitement of the holiday, during shul on Tuesday I started to feel icky. I thought my tummy had gone off so went to the loo, but it wasn't that. To spare you the details, the short of it is I had a surprise UTI. I can't remember the last time I had one, so was pretty flipped out when I started to see blood. Thankfully my sister in law knew what to do and sorted me out until I was able to see the doctor the next day. Yes I had a bad UTI and had to go on a major dose of antibiotics. Oh joy!
As for this week so far, it's been pretty icky. Yesterday I had a visit with a neurologist, Dr. Fatimi. When I had my physical a few weeks back, my doctor recommended me to one so we could check out all this tingling/pins and needles down my right arm/hand and the twitching in my left finger. She decided I needed an MRI for my neck and an EMG test. For those not familiar, please see the video below. I'm still not convinced after watching it that it isn't more painful than they are portraying, but that's because I do not trust anyone in the medical profession anymore after all of the pain they've inflicted on me. But hey, that's just me.
EMG NCS test
Currently the doctor thinks I might have carpal tunnel. I've thought I've had that for a while, but the pain I've been having daily for the last few months feels different than that, so we shall see. (As a side note, my right hand by the thumb area has been killing me the last couple of weeks. The injection that Dr. Melone gave me definitely wore off. I know he said that I would need surgery if the injection didn't last, and not sure if I should do that now or wait. I am going to see what the EMG study shows first about carpal tunnel and then make an appointment to see him. He said it would be an easy surgery compared to what I've had in the past, but I need more detailed information on that.) The doctor was pretty young and I am not sure I am that keen about her, but I will give it a little time. Then again, whenever I meet a doctor they usually think I'm barmy because of the multitude of issues I have. It's hard to find a good doctor that has a clue. Anyway, she said that if I do have carpal tunnel she would give me a splint to wear at night. I said I've already got that. She also mentioned Lyrica and when I told her I'd only heard bad things from people who have taken it, she said she had seen good results. Since I don't really trust doctors and I definitely don't trust pharmaceutical companies, and I do believe real people stories, I am not going to go that route. It's bad enough I'm taking Mobic now - though I really need to remember to take it every day, I think it's a subconscious thing that I forget it. I told her I would prefer non-medicated ways to treat whatever the issue is, and she did say PT could be something as well as massage therapy. Now that is something I can get on board with!
Of course when I returned to the office there were messages from my regular doctor. The results of the pee test came back and the lab claims that the bacteria in me would not be destroyed by the antibiotics I am on. So, since neither my doctor nor I wanted to try more drugs just for the sake of it, I have to go back on Friday for another pee test to see if the bacteria have been killed or if I really do need to start another course of antibiotics.
I'm starting to wonder how I have not ended up in a loony bin at this point.
I think that is all, but my memory has been crap. Yesterday the neurologist asked me if I had a doctor treating my FMS and I was like - on no, didn't like the last one and haven't got a new one. Daft git I am - of course I have a new one, the one that put me on Mobic. It was pretty embarrassing to have to tell her that I forgot.
Oh - never heard again from Dr. Kelly's office about rescheduling, and I'm in no rush to go back there. Still v. mad that they did not help me one bit in fighting the insurance about cancelling my PT. Also had an appointment w/ Dr. A scheduled for last Friday, but his office cancelled it, and I have not been bothered about ringing them back to reschedule either. I am so bored with all of this medical rubbish!
18-24 August: went to pool 3x that week, and cut my hair off. I needed a change in so many ways, and that one was the easiest! Then again, I didn't really have much of a say. Avi, my hairdresser, decided I was long overdue, and well, there is no arguing with him. That weekend I was out pre-celebrating my birthday, which I overdid - way too much. You don't realise how that sangria hits you until it's too too late. Had an appointment with Dr. A, to check my wound - he said it was ok but the day before it didn't look so ok.
25-31 August: was good again and did pool 3x. Continued to celebrate within reason for the most part, until the weekend. Oops. I did do some samba dancing though which I thought was quite impressive for my hip. The hip let me enjoy myself for a bit and then decided it was time to sit back down. But still, no long term suffering which was a v. good thing.
1-7 September: pool 2x that week. Yet another appointment with Dr. A to check the wound that would not heal. He says it was doing okay, even though I was in more pain than I had been in for a few weeks (not counting the cauterization).
8-14 September: Big accomplishment - I biked from my flat to BB&B, which is a little over 2 miles. I was very proud of the hip, it held up quite nicely, even with a few inclines that were on First Ave. Pool again 3x.
15-21 September: Pool only 2x this week. I had to go to the dentist to have a crown made for my last root canal, the one that went horribly wrong. Yes, it was almost a year ago, but after all that agony I was quite happy to not have anyone muck up my mouth again. It was agony and then I had to stay for a cleaning as well. Thankfully I took half a pain pill beforehand so that helped a little bit. My TMJ was a mess for the week after, and still is a bit now come to think of it.
22-28 September: very bad - didn't go to the pool all week. To be fair, Thursday night I had a pretty bad onset of my FMS and by the weekend was almost completely bed/couch bound. Between my exhaustion and stress and the weather I felt absolutely dreadful. I did somehow manage to pull it together enough to make challah on Sunday though. Not quite sure how I pulled that off, but I was determined.
29-30 September - 5 October: pool 2x this week. It was difficult with all the running around back and forth to the island for the holidays, and then again on the weekend for the dentist. I had my crown fitted and also decided to get a night guard as my teeth seem to be catching the brunt of my nighttime grinding. Hopefully this one will be better than the one I had ages ago and it will do some good. It sure costs enough! But to add to the excitement of the holiday, during shul on Tuesday I started to feel icky. I thought my tummy had gone off so went to the loo, but it wasn't that. To spare you the details, the short of it is I had a surprise UTI. I can't remember the last time I had one, so was pretty flipped out when I started to see blood. Thankfully my sister in law knew what to do and sorted me out until I was able to see the doctor the next day. Yes I had a bad UTI and had to go on a major dose of antibiotics. Oh joy!
As for this week so far, it's been pretty icky. Yesterday I had a visit with a neurologist, Dr. Fatimi. When I had my physical a few weeks back, my doctor recommended me to one so we could check out all this tingling/pins and needles down my right arm/hand and the twitching in my left finger. She decided I needed an MRI for my neck and an EMG test. For those not familiar, please see the video below. I'm still not convinced after watching it that it isn't more painful than they are portraying, but that's because I do not trust anyone in the medical profession anymore after all of the pain they've inflicted on me. But hey, that's just me.
EMG NCS test
Currently the doctor thinks I might have carpal tunnel. I've thought I've had that for a while, but the pain I've been having daily for the last few months feels different than that, so we shall see. (As a side note, my right hand by the thumb area has been killing me the last couple of weeks. The injection that Dr. Melone gave me definitely wore off. I know he said that I would need surgery if the injection didn't last, and not sure if I should do that now or wait. I am going to see what the EMG study shows first about carpal tunnel and then make an appointment to see him. He said it would be an easy surgery compared to what I've had in the past, but I need more detailed information on that.) The doctor was pretty young and I am not sure I am that keen about her, but I will give it a little time. Then again, whenever I meet a doctor they usually think I'm barmy because of the multitude of issues I have. It's hard to find a good doctor that has a clue. Anyway, she said that if I do have carpal tunnel she would give me a splint to wear at night. I said I've already got that. She also mentioned Lyrica and when I told her I'd only heard bad things from people who have taken it, she said she had seen good results. Since I don't really trust doctors and I definitely don't trust pharmaceutical companies, and I do believe real people stories, I am not going to go that route. It's bad enough I'm taking Mobic now - though I really need to remember to take it every day, I think it's a subconscious thing that I forget it. I told her I would prefer non-medicated ways to treat whatever the issue is, and she did say PT could be something as well as massage therapy. Now that is something I can get on board with!
Of course when I returned to the office there were messages from my regular doctor. The results of the pee test came back and the lab claims that the bacteria in me would not be destroyed by the antibiotics I am on. So, since neither my doctor nor I wanted to try more drugs just for the sake of it, I have to go back on Friday for another pee test to see if the bacteria have been killed or if I really do need to start another course of antibiotics.
I'm starting to wonder how I have not ended up in a loony bin at this point.
I think that is all, but my memory has been crap. Yesterday the neurologist asked me if I had a doctor treating my FMS and I was like - on no, didn't like the last one and haven't got a new one. Daft git I am - of course I have a new one, the one that put me on Mobic. It was pretty embarrassing to have to tell her that I forgot.
Oh - never heard again from Dr. Kelly's office about rescheduling, and I'm in no rush to go back there. Still v. mad that they did not help me one bit in fighting the insurance about cancelling my PT. Also had an appointment w/ Dr. A scheduled for last Friday, but his office cancelled it, and I have not been bothered about ringing them back to reschedule either. I am so bored with all of this medical rubbish!
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