bassclari
05-28-2009, 08:48 PM
If you don't mind a personal question...You mentioned in another post that you have dystonia. Do you also have TMD? Do you think they are related?
Sponsor
Thelma-Louise
05-28-2009, 10:41 PM
Yes I do have TMD brought on by a change in my bite and I think they are related. Dystonia was diagnosed by a neurologist - basically its a movement disorder characterized by a repetitive yet irregular muscle functioning or dysfunction as the case may be usually triggered by some trauma or injury elsewhere for those reading this not familiar with it. I am pretty sure however that I read somewhere it may also be related to the a degeneratioin of the myelin (sp?) sheathing in the brain stem - he also thought I might have MS based on my MRI results (10 brain lesions) but I never went back to him as I was looking for some relief to my pain at the time and he offered very little.
I get facial spasms that are characterized by my tongue making a repetitive circular motion around my upper back teeth - hence his diagnosis. But this started shortly after a visit with the dentist and a back tooth was "modified" - a simple filling gone wrong - although I had been getting facial pain and fatigue prior to that which I attributed to dental work replaced a few years earlier.
IMO or what makes sense to me anyway is that the ill-fitting bridges I had done followed by the botched filling on the back tooth triggered or induced an injury of some kind to one of my facial muscles.
I get facial spasms that are characterized by my tongue making a repetitive circular motion around my upper back teeth - hence his diagnosis. But this started shortly after a visit with the dentist and a back tooth was "modified" - a simple filling gone wrong - although I had been getting facial pain and fatigue prior to that which I attributed to dental work replaced a few years earlier.
IMO or what makes sense to me anyway is that the ill-fitting bridges I had done followed by the botched filling on the back tooth triggered or induced an injury of some kind to one of my facial muscles.
madnmas
05-28-2009, 11:08 PM
So what ever came out of the lesion thing?
Thelma-Louise
05-29-2009, 01:50 AM
Well I never went back to the neurologist. Supposedly a spinal tap is needed to confirm MS and even though my cousin on my father's side of the family had it, I did discuss the issue with my primary care dr and he said he felt the lesions could also indicate future Alzheimers but if my symptoms changed or continued to progress then we could consider doing the spinal tap. The thing is - not that I am that familiar with the various forms of MS, but I don't remember my cousin having pain with the onset of it and my biggest problem at that time was just horrendous pain. So me and my dr decided to take a wait and see approach and that is how we left it. Even now when I go for a checkup the issue has never really come up again.
bassclari
05-29-2009, 09:09 AM
Thank you for answering Thelma-Louise. What you said made perfect sense to me.
Just the other day I found a really good TMJ dentist who diagnosed TMD (he actually took xrays, not like the other dentist who put me off). During this journey to find the root of my pain and spasms, I had requested an appt with a neuro for evaluation for cervical dystonia (a family member has it, and their symptoms are very, very similar to mine, and I felt it would be worth investigating. They mentioned to the neuro during one of their appts about me, and he agreed it is worth looking into). Then I was referred to this dentist by a friend, and thought I would go, it would be one step taken care of before the neuro appt. When I found out about the TMJ disorder, I was wondering if I should cancel my appt with the neuro. The dentist said not to cancel because the waiting list is so long to get into the neuro.
I haven't cancelled yet, I have until 2 weeks before the appt to confirm.
Just the other day I found a really good TMJ dentist who diagnosed TMD (he actually took xrays, not like the other dentist who put me off). During this journey to find the root of my pain and spasms, I had requested an appt with a neuro for evaluation for cervical dystonia (a family member has it, and their symptoms are very, very similar to mine, and I felt it would be worth investigating. They mentioned to the neuro during one of their appts about me, and he agreed it is worth looking into). Then I was referred to this dentist by a friend, and thought I would go, it would be one step taken care of before the neuro appt. When I found out about the TMJ disorder, I was wondering if I should cancel my appt with the neuro. The dentist said not to cancel because the waiting list is so long to get into the neuro.
I haven't cancelled yet, I have until 2 weeks before the appt to confirm.
Thelma-Louise
05-29-2009, 11:06 AM
I would keep the appt with the neuro and let him do non-invasive testing if he wants to - it doesn't hurt to rule out as many medical possibilities as you can and to get his opinion - but if he does rasie numerous possibilities try not to freak out like I did - I think that is what made me not want to go back to him - I took the road of "ignorance is bliss" and just dismissed his diagnosis for the most part and chose to consider or seek out other causes first.
The neuro I went to also did a needle EMG to test muscle response throughout my body and I found it to be very painful - it left black and blue bruises just about on every muscle he tested - and after he did the test he said all it showed is that my muscles are overly responding to stimuli - the test looks for underresponsiveness (such as in Parkinsons disease) so I passed it. Well with TMD the muscles are excessively strained so they are going to be highly responsive. So unless you truly feel this is some type of neurological condition I would avoid that test - a surface EMG however is OK - with that they roll a sensor over your muscles which registers which muscle groups are tense or not and how tense are they.
I went to the neuro primarily b/c my primary care dr urged me to as he was at a loss as to what was causing my pain even though I was almost 100% certain it was related to my jaws, teeth and bite. Plus by then I was doing my own research as well and found oromandibular dystonia - but if you do enough searching you will come across several conditions and syndromes which will manifest most of the symptoms one can get with TMD/TMJ. So to a certain extent I tried to rule out as many as I could and try various therapies and alternative treatments and those which induced a positve response in my symptoms led me to the conclusion that my intitial or gut instinct of what my problem was, as well as the sequence of events (dental appts) and appearance of symptoms, were correct.
Good luck with your appt and the new dentist. Will you be undergoing treatment with him?
The neuro I went to also did a needle EMG to test muscle response throughout my body and I found it to be very painful - it left black and blue bruises just about on every muscle he tested - and after he did the test he said all it showed is that my muscles are overly responding to stimuli - the test looks for underresponsiveness (such as in Parkinsons disease) so I passed it. Well with TMD the muscles are excessively strained so they are going to be highly responsive. So unless you truly feel this is some type of neurological condition I would avoid that test - a surface EMG however is OK - with that they roll a sensor over your muscles which registers which muscle groups are tense or not and how tense are they.
I went to the neuro primarily b/c my primary care dr urged me to as he was at a loss as to what was causing my pain even though I was almost 100% certain it was related to my jaws, teeth and bite. Plus by then I was doing my own research as well and found oromandibular dystonia - but if you do enough searching you will come across several conditions and syndromes which will manifest most of the symptoms one can get with TMD/TMJ. So to a certain extent I tried to rule out as many as I could and try various therapies and alternative treatments and those which induced a positve response in my symptoms led me to the conclusion that my intitial or gut instinct of what my problem was, as well as the sequence of events (dental appts) and appearance of symptoms, were correct.
Good luck with your appt and the new dentist. Will you be undergoing treatment with him?
madnmas
05-29-2009, 11:57 AM
Thelma-
It seems to me that I found out (in my many years of being a hypochondriac-LOL) that brain lesions *CAN* be totally benign and that people have them. For some reason this sticks out to me.
It seems to me that I found out (in my many years of being a hypochondriac-LOL) that brain lesions *CAN* be totally benign and that people have them. For some reason this sticks out to me.
bassclari
05-29-2009, 06:08 PM
Good luck with your appt and the new dentist. Will you be undergoing treatment with him?
Thanks, and yes, I intend to. That being said, I have found that the temp splint he wanted me to wear (mostly at night, but more if I could handle it) has thrown me off. I haven't had as bad a week as this past week in a long time. Started with a migraine, and now I just feel muscle pain from the top of my head to the bottom of my back. Not to mention off balance, and feeling like I'm crooked or tilted somehow. I don't know if it is due to the migraine, or the splint. I'm hoping that the splints he will be making will eventually make things better. Fingers crossed anyway!
It is so hard to know what to do. I have been in pain for so long, and the x-ray was the first concrete evidence of an issue. Even if the joint is "realigned" but I still have to deal with the spasms and pain, then at least it is a starting point. I can't say I didn't try.
Thanks, and yes, I intend to. That being said, I have found that the temp splint he wanted me to wear (mostly at night, but more if I could handle it) has thrown me off. I haven't had as bad a week as this past week in a long time. Started with a migraine, and now I just feel muscle pain from the top of my head to the bottom of my back. Not to mention off balance, and feeling like I'm crooked or tilted somehow. I don't know if it is due to the migraine, or the splint. I'm hoping that the splints he will be making will eventually make things better. Fingers crossed anyway!
It is so hard to know what to do. I have been in pain for so long, and the x-ray was the first concrete evidence of an issue. Even if the joint is "realigned" but I still have to deal with the spasms and pain, then at least it is a starting point. I can't say I didn't try.
Thelma-Louise
05-29-2009, 06:18 PM
Thelma-
It seems to me that I found out (in my many years of being a hypochondriac-LOL) that brain lesions *CAN* be totally benign and that people have them. For some reason this sticks out to me.
That's what I read somewhere too - something like 40% of people over 40 have them and most times they mean nothing - I think the fact that I had 10 seemed abnormally high and they were characterized as being "significant" lesions. My sis said they were probably the result of too much partying and use of recreational drugs when I was younger. LOL
It seems to me that I found out (in my many years of being a hypochondriac-LOL) that brain lesions *CAN* be totally benign and that people have them. For some reason this sticks out to me.
That's what I read somewhere too - something like 40% of people over 40 have them and most times they mean nothing - I think the fact that I had 10 seemed abnormally high and they were characterized as being "significant" lesions. My sis said they were probably the result of too much partying and use of recreational drugs when I was younger. LOL
Thelma-Louise
05-29-2009, 06:33 PM
I don't mean to confuse you more or go against your drs treatment plan but I wouldn't wear the temp splint if it is causing more symptoms or worsening the symptoms you had to begin with. I learned my lesson with that issue the hard way. If you are now feeling off balance or crooked then chances are the splint is not balancing your bite and jaws - it could even be throwing things off more or skewing the temporal planes -the path along the cheekbones over the tm joints and above the ears. You could call him and tell him it is making things worse and see what he says you should do but IMO if things feel worse with the splint then without it then stop the splint - its one thing to go through an initial adjustment period but another to allow it to incapacitate you more.
madnmas
05-29-2009, 08:09 PM
My hats off to you for not being a worrier and being able to let it go.