Aa
Can't stand the pain and don't know what to do next
I've posted over the last few weeks about my experiences with severe TN and occipital neuralgia. I'm 36 yo with a hx of other neurological issues but a clear MRI. Surgeons say I have "atypical" TN because it's most likely caused by MS, but I can't get DMD for MS becuase my MRI is clear. Meanwhile, my level of pain is increasing steadily.
Anyone ever have these days where you're just desperate for an answer? Please, why can't someone come out an figure out what's wrong with me? Come on! I had bilateral TN at 34!! My neuro is in a watch and wait mode. She's "not worried" about my progression because my sx are mostly sensory. I have some more mild motor sx, that would probably seem more overwhelming if I wasn't having such bad PAIN. I'm watching my pain level increase over the last year and a half and I'm worried about me! I have three little kids between 4 and 10 and I work full-time. I can't function in this kind of pain.
I don't think DMD would cure my TN, but they could potentially keep it from getting worse, right?? I'm just sick of every doctor I see being fairly confident of what's wrong with me (MS) but no one will dx it. I keep trying to make myself feel better that at least they don't think it's all in my head (been there, done that!) and that is some comfort, but I hate getting worse and not doing anything about it, especially when there are drugs that could likely help and probably wouldn't hurt.
Grrrr... I just don't know what to do!
Stephanie
Anyone ever have these days where you're just desperate for an answer? Please, why can't someone come out an figure out what's wrong with me? Come on! I had bilateral TN at 34!! My neuro is in a watch and wait mode. She's "not worried" about my progression because my sx are mostly sensory. I have some more mild motor sx, that would probably seem more overwhelming if I wasn't having such bad PAIN. I'm watching my pain level increase over the last year and a half and I'm worried about me! I have three little kids between 4 and 10 and I work full-time. I can't function in this kind of pain.
I don't think DMD would cure my TN, but they could potentially keep it from getting worse, right?? I'm just sick of every doctor I see being fairly confident of what's wrong with me (MS) but no one will dx it. I keep trying to make myself feel better that at least they don't think it's all in my head (been there, done that!) and that is some comfort, but I hate getting worse and not doing anything about it, especially when there are drugs that could likely help and probably wouldn't hurt.
Grrrr... I just don't know what to do!
Stephanie
Stephanie, I have had an experience with Johns Hopkins, they are really cruel with those appointments in 4-6 or more months. It will work much better if you ask your doctor to call them and convince them to see you earlier, since they never ever listen to patients, believe me. It took me about a month only to schedule an appointment! Do not believe they are "swamped" - last time I called for a follow-up, they offered me a 6-month wait saying the Dr. is "overwhelmed with patients". When I told them I would be leaving the country in 2 months, they immediately called me back and rescheduled to see her in three weeks! When I came to my appt 3 hrs earlier (I can not drive that far, had to adjust to my husband's schedule), they called the Dr. and she saw me earlier - she had no other patients! I would also ask your neuro to refer you to other places, like Columbia University - the more the better. Why? - first, you will be waiting for all those appts simultaneously, second - for example, in my case, after 4 months waiting, the Dr saw me for 30 MINUTES (first appt!), then, after two months she called me and said she "needs to cancel my follow up b/c she can not help me". I hope your experience will be much better, but better have a backup at another place. Like you, I also wrote to Drs, my experience shows they rarely pay attention to patients, but they will listen to their colleague - I would definitely ask your Dr for a help dealing with them.
Good luck!
Good luck!
Please let me know how the acupuncture goes. I recently called about it, and was given the names of 2 people that can do this.
My neuro advised me not to, but because I am Coumadin. (blood thinner). However, I heard there is no bleeding involved with acupuncture, so I might try it anyway. I am willing to try anything that might help.
So, I wish you a good appt, and let us know how it goes. If it goes well for you, I am signing up too!
Michelle
My neuro advised me not to, but because I am Coumadin. (blood thinner). However, I heard there is no bleeding involved with acupuncture, so I might try it anyway. I am willing to try anything that might help.
So, I wish you a good appt, and let us know how it goes. If it goes well for you, I am signing up too!
Michelle
Thank you, Michelle!! It really helps to know what you're experiencing with drug effects, etc.,. Lucky for me, percocet doesn't seem to impact me in the "spacy" way, I actually feel *more* clear headed after taking it because the pain is reduced. I generally just take one, but twice have had to take two.
My neuro told me to add a second tegretol in the morning. I hope I can do that and still be awake. I'm at the point where all the anti seizure drugs are starting to make me feel very drugged. I hope that goes away soon.
Today is a better day so far. I can really deal with everything so much better when I'm not in constant pain. Occassional pain is still there, but it's not constant. So it's a good day to get a lot done. And tomorrow I see have my first accupuncture treatment!
It's unfortunate that we're both going through this, but good to have found each other.
Stephanie
My neuro told me to add a second tegretol in the morning. I hope I can do that and still be awake. I'm at the point where all the anti seizure drugs are starting to make me feel very drugged. I hope that goes away soon.
Today is a better day so far. I can really deal with everything so much better when I'm not in constant pain. Occassional pain is still there, but it's not constant. So it's a good day to get a lot done. And tomorrow I see have my first accupuncture treatment!
It's unfortunate that we're both going through this, but good to have found each other.
Stephanie
Forgot one more thing, as far as Tegretol goes.
My neuro told me some of the side effects from Tegretol are what you are experiencing. She put me on Trileptal instead, she told me it was "like" Tegretol but with less side effects.
FYI,
Michelle
My neuro told me some of the side effects from Tegretol are what you are experiencing. She put me on Trileptal instead, she told me it was "like" Tegretol but with less side effects.
FYI,
Michelle
Here are my 2 cents. They are really not worth even one, but what the heck...
As far as narcotics and my face/ear/scalp pain, I have tried a few. Yes, you are right. I have been told my some (not my neuros though), that opiates do not help with the nerve pain. However, for me, the Percocet does indeed help.
When the pain is severe, the only thing I have found so far that helps is a percocet. I take a "small" amount, and was told by the neuro that it can be increased if needed. He also said I should take more when needed and not be afraid to take it. That is why these drugs were made.
Vicodin did not help me, and Oxycontin doesn't either (I think because it is long acting and my body doesnt absorb is correctly).
So, with the Percocet, I still have pain, but it is more manageable. I do think it dulls me and makes me not care as much about the pain, but I know for sure it helps me. After about 2-3 hours the pain comes back BAD, and as soon as I take the next one it is better. (I wait for 4 hours, but know exactly when it starts to wear off.)
Both my neuros told me not to worry about taking it when needed. I also have "addiction" problems in my family, and was/am worried that I could become quickly addicted as well. But, I need to do what I need to do when I have pain, and take it.
So, whether my pain is only "percepted" as being helped by Percocet or not, I will continue to take it when needed. It at leasts helps me to function better when needed at times.
Steph, I feel like I have met my kindred spirit with you. You and I unfortunately share the pain almost exactly to one another.
Today is a good day, and I am going to enjoy it while I can. (Those pain free days make such a happy difference to me).
Hugs,
Michelle
As far as narcotics and my face/ear/scalp pain, I have tried a few. Yes, you are right. I have been told my some (not my neuros though), that opiates do not help with the nerve pain. However, for me, the Percocet does indeed help.
When the pain is severe, the only thing I have found so far that helps is a percocet. I take a "small" amount, and was told by the neuro that it can be increased if needed. He also said I should take more when needed and not be afraid to take it. That is why these drugs were made.
Vicodin did not help me, and Oxycontin doesn't either (I think because it is long acting and my body doesnt absorb is correctly).
So, with the Percocet, I still have pain, but it is more manageable. I do think it dulls me and makes me not care as much about the pain, but I know for sure it helps me. After about 2-3 hours the pain comes back BAD, and as soon as I take the next one it is better. (I wait for 4 hours, but know exactly when it starts to wear off.)
Both my neuros told me not to worry about taking it when needed. I also have "addiction" problems in my family, and was/am worried that I could become quickly addicted as well. But, I need to do what I need to do when I have pain, and take it.
So, whether my pain is only "percepted" as being helped by Percocet or not, I will continue to take it when needed. It at leasts helps me to function better when needed at times.
Steph, I feel like I have met my kindred spirit with you. You and I unfortunately share the pain almost exactly to one another.
Today is a good day, and I am going to enjoy it while I can. (Those pain free days make such a happy difference to me).
Hugs,
Michelle
Thanks, everyone. There is a cancellation list as Hopkins and I'm on it. The neuro there specializes in TN and headaches. Seems like a good fit for me since I don't want to go the surgical route at this point.
My neuro here is an MS specialist. Yes, I also wish she's make a dx already, but I was so happy to have a dr that didn't think I was "stressed" that I'm afraid of trying to find someone new. At least the consult with the neuro at Hopkins is specifically about the facial and head pain. I really hope they can see me sooner than May. With my luck, they will call when I'm on travel or something.
I'd do the icecream treatment but between the TN, narcotics, and other meds, I have very little appetite these days. Though icecream is an ideal TN food, since I don't have to chew... :)
I feel a bit better this morning. I guess my pain level is generally better in the mornings. I should try to get more done then, when the pain is lower.
Also, I'm trying to figure out if 100 mg of tegretol, taken at night, could have such pronounced effects on my balance and speech. I'm tripping and stumbling a LOT more than usual. Last night (about 22 hours after my last dose of tegretol), my husband kept asking me what was wrong. Also, I was slurring my words a bit. It was noticable to my kids when they called from their grandparents house.
I will try to write a letter to the drs at NYU. It's certainly easier than making an appointment and driving 5 hours each way only to find out they wouldn't dx me anyway.
I know that "the grass is always greener" but I do sometimes think it would be easier to have trouble walking, even need a wheelchair, than to have this pain be so uncontrolled. Quix, how do I know if I'm taking too much of the percocet? I'm afraid if I did have to take it on a regular basis, there'd be a risk of addiction. My father is an alcoholic and I've always been careful with any type of drug because I fear addiction in a serious way.
One more question about treatment, to anyone who's had experience with this, or knows about drugs (Quix, Michelle...) I keep reading that narcotics are "generally not helpful" with this type of pain, but that's not actually been my experience. The percocet DOES lessen the pain (or my perception of it). Also, in the ER they gave me dilaudid, plus some solumedrol and something else I can't remember the name of, and these did help break some of the pain cycle. So am I weird that this helps with the pain??
Thank you all. Your e-hugs and words are very helpful right now. I try to hide this pain as much as possible from those around me and it's nice to have people who understand.
My neuro here is an MS specialist. Yes, I also wish she's make a dx already, but I was so happy to have a dr that didn't think I was "stressed" that I'm afraid of trying to find someone new. At least the consult with the neuro at Hopkins is specifically about the facial and head pain. I really hope they can see me sooner than May. With my luck, they will call when I'm on travel or something.
I'd do the icecream treatment but between the TN, narcotics, and other meds, I have very little appetite these days. Though icecream is an ideal TN food, since I don't have to chew... :)
I feel a bit better this morning. I guess my pain level is generally better in the mornings. I should try to get more done then, when the pain is lower.
Also, I'm trying to figure out if 100 mg of tegretol, taken at night, could have such pronounced effects on my balance and speech. I'm tripping and stumbling a LOT more than usual. Last night (about 22 hours after my last dose of tegretol), my husband kept asking me what was wrong. Also, I was slurring my words a bit. It was noticable to my kids when they called from their grandparents house.
I will try to write a letter to the drs at NYU. It's certainly easier than making an appointment and driving 5 hours each way only to find out they wouldn't dx me anyway.
I know that "the grass is always greener" but I do sometimes think it would be easier to have trouble walking, even need a wheelchair, than to have this pain be so uncontrolled. Quix, how do I know if I'm taking too much of the percocet? I'm afraid if I did have to take it on a regular basis, there'd be a risk of addiction. My father is an alcoholic and I've always been careful with any type of drug because I fear addiction in a serious way.
One more question about treatment, to anyone who's had experience with this, or knows about drugs (Quix, Michelle...) I keep reading that narcotics are "generally not helpful" with this type of pain, but that's not actually been my experience. The percocet DOES lessen the pain (or my perception of it). Also, in the ER they gave me dilaudid, plus some solumedrol and something else I can't remember the name of, and these did help break some of the pain cycle. So am I weird that this helps with the pain??
Thank you all. Your e-hugs and words are very helpful right now. I try to hide this pain as much as possible from those around me and it's nice to have people who understand.
Quixie,
We must have wrote at the same time.
Just needed to say, I really love the treatment of applying ice-cream directly to your head. Quite the visual. I had coconut ice cream tonight, pretty tasty.
Well, Steph, Guess I recommend, taking a pain pill, wait 1/2 hour and then apply the ice cream as needed. Certainly sounds good...
Hugs to you Steph,
Michelle
We must have wrote at the same time.
Just needed to say, I really love the treatment of applying ice-cream directly to your head. Quite the visual. I had coconut ice cream tonight, pretty tasty.
Well, Steph, Guess I recommend, taking a pain pill, wait 1/2 hour and then apply the ice cream as needed. Certainly sounds good...
Hugs to you Steph,
Michelle
I can only add my support and sympathy at your suffering. Your neuro, though, is a weenie and not a very empathetic one. To feel that you DO have MS, but be afraid to diagnose without the MRI evidence, is just cowardly. Sheesh, if nothing else have you sign an informed consent that you realize she might be wrong, but you want to go ahead with a presumed diagnosis of MS and start treatment.
She needs to grow a pair already. And I am furious with her for carrying the idea that pain is just a sensory problem and is not serious. TN is called the Suicide Pain for a reason - it destroys the quality of life. Would I rather have to use a wheelchair or have chronic bilateral TN and occipital neuralgia? Hmmmm..".Let''s roll-away....roll-away."
Have you tried applying icecream directly to your head?
Wish I could help.
As for NYU, Elaine contacted them on the behalf of another member who had a normal MRI and the response from Dr. Herbert was, "She will have trouble getting a diagnosis with a normal MRI." I took that to mean that the diagnosis might even be difficult there. However, they have stated that MS with a normal MRI is a possibility.
So, NYU contact names Drs. Herbert and Kister.
Write them a detailed letter and see if they would do a consult.
Quix
I agree that a DMD would not likely affect any current symptom, except that it would ease your mind and might provide help for future problems.
Having the vessel anomaly that causes classic TN on both sides would be as rare as hens teeth. Bilateral TN does scream MS to me.
I would have you have less fear of the narcotics. Use them as needed. No one should allow severe on-going pain.
She needs to grow a pair already. And I am furious with her for carrying the idea that pain is just a sensory problem and is not serious. TN is called the Suicide Pain for a reason - it destroys the quality of life. Would I rather have to use a wheelchair or have chronic bilateral TN and occipital neuralgia? Hmmmm..".Let''s roll-away....roll-away."
Have you tried applying icecream directly to your head?
Wish I could help.
As for NYU, Elaine contacted them on the behalf of another member who had a normal MRI and the response from Dr. Herbert was, "She will have trouble getting a diagnosis with a normal MRI." I took that to mean that the diagnosis might even be difficult there. However, they have stated that MS with a normal MRI is a possibility.
So, NYU contact names Drs. Herbert and Kister.
Write them a detailed letter and see if they would do a consult.
Quix
I agree that a DMD would not likely affect any current symptom, except that it would ease your mind and might provide help for future problems.
Having the vessel anomaly that causes classic TN on both sides would be as rare as hens teeth. Bilateral TN does scream MS to me.
I would have you have less fear of the narcotics. Use them as needed. No one should allow severe on-going pain.
Steph,
May 2011?!?! Do they have a cancellation list? That is a LONG time to wait.
I hope you can get in sooner, or maybe find a different neuro for a quicker 2nd opinion. Seems like a long time to wait. Is the neuro you are currently seeing a MS specialist?
Maybe you can be referred to a Neurologist that deals primarily with headaches/facial pain to make sure everything is being done that can for you. I would ask about that. We really have to advocate so much for ourselves here. It is tough, I know, particularly when you feel so bad and really need someone to take care of you and not having to fight so much.
Is there someone that can help advocate for you? Family? Friend? It is so hard to be in the position you are in now, and just having to wait and wait and wait...Hopefully there will be a treatment for both of us in the future that will take all the pain away. Hope is good.
Thinking of you,
Michelle
May 2011?!?! Do they have a cancellation list? That is a LONG time to wait.
I hope you can get in sooner, or maybe find a different neuro for a quicker 2nd opinion. Seems like a long time to wait. Is the neuro you are currently seeing a MS specialist?
Maybe you can be referred to a Neurologist that deals primarily with headaches/facial pain to make sure everything is being done that can for you. I would ask about that. We really have to advocate so much for ourselves here. It is tough, I know, particularly when you feel so bad and really need someone to take care of you and not having to fight so much.
Is there someone that can help advocate for you? Family? Friend? It is so hard to be in the position you are in now, and just having to wait and wait and wait...Hopefully there will be a treatment for both of us in the future that will take all the pain away. Hope is good.
Thinking of you,
Michelle
Yeah, the neurosurgeon said, when I first saw him a year ago, that there was basically nothing other than MS that could cause bilateral TN at my age.
I've already had a discussion with my neuro about the treat w/ DMD or risk-benefits if I do or don't have MS. She agreed that the side effects of the drugs were comparatively small. Still, she wants to wait...
I'm about ready to scream, except that would hurt my head. :)
I have a second opinion appointment scheduled at Johns Hopkins. For May 2011!
I've already had a discussion with my neuro about the treat w/ DMD or risk-benefits if I do or don't have MS. She agreed that the side effects of the drugs were comparatively small. Still, she wants to wait...
I'm about ready to scream, except that would hurt my head. :)
I have a second opinion appointment scheduled at Johns Hopkins. For May 2011!
Oh, and bilateral TN from a blood vessel would be rather unlikely, so the obvious candidate seems to be... MS! Are those darn DMDs so expensive, so horrible, so much worse than your unbearable TN pain, that they can withhold them, with their possible benefit to you, rather than take a chance you'll get a drug for a disease you turn out not to have? (But you have it... bilateral TN at 34, come on!)
OK, what things can cause bilateral TN? Aren't there only two things--MS and something mechanical, such as blood vessel on the nerve?
If they don't think you have MS, then the TN must be from a mechanical cause. So they should recommend surgery.
If they don't think it's a mechanical cause, then the TN must be from MS. So they should recommend a DMD (in addition to the other meds).
What are they waiting for??? Someone needs to step up and make a decision!!
My analysis may be simplistic, particularly since I'm not very knowledgeable about TN, but it seems like they need to TAKE RESPONSIBILITY for helping you. This has gone on too long!
Just my 2 cents.
Nancy
If they don't think you have MS, then the TN must be from a mechanical cause. So they should recommend surgery.
If they don't think it's a mechanical cause, then the TN must be from MS. So they should recommend a DMD (in addition to the other meds).
What are they waiting for??? Someone needs to step up and make a decision!!
My analysis may be simplistic, particularly since I'm not very knowledgeable about TN, but it seems like they need to TAKE RESPONSIBILITY for helping you. This has gone on too long!
Just my 2 cents.
Nancy
Thanks for the suggestions. Sarahsmom and I have discussed doctors. I know there are lots of good neuros around here, but it seems like there are very few who would dx without a spot on your MRI. I've been the route of being brushed off by neuros in the past and so in some ways I'm just thankful for a neuro who will treat my sx.
I completely get that a DMD won't impact the pain I'm already having. I just would hope it had the potential to keep it from getting worse, or getting worse as fast. Like Michelle said, it would be nice to know that during the pain, everything was being done to stop it from getting worse.
I received a remarkably quick reply from Hopkins via email:
**********
Ms. _____,
Your situation is very complicated, given possible bilateral trigeminial, occipital neuralgia, and perhaps MS. There is nothing I can recommend at this point, but can say the following. Dr. Y, our neurologist most familiar with complex facial and head pain can be scheduled at ________, but he is scheduling about a year ahead (he is swamped). We see patients with trigeminal neuralgia for surgical procedures, but in a case of MS-related TN, we are typically recommending a rhizotomy (20 minute needle procedure under anesthesia), but this would need to be further evaluated because of the bilaterality of your pain. This in no way addresses occipital neuralgia.
If you are interested in pursuing an evaluation with Dr. Z regarding your TN pain and possible procedures, we could certainly make an appointment. If you want a fresh perspective from a neurologist, then you can call Dr. Y’s office and wait for an appointment. You certainly know that medical conditions are treated with medications or procedures, and I cannot think of any way non-medicine and non-procedure therapy.
Let me know if you want me to assist you with a consultation with Dr. Y.
**********
It was certainly a very nice (and QUICK!) reply, but it's also very depressing. Basically saying there's nothing they can do. I may make an appointment for a year out, just to have a second opinion. I can always cancel it if necessary.
Dam*!! I'm feeling really frustrated. I think I might take the rest of the afternoon off with sick time. I can barely function anyway.
I completely get that a DMD won't impact the pain I'm already having. I just would hope it had the potential to keep it from getting worse, or getting worse as fast. Like Michelle said, it would be nice to know that during the pain, everything was being done to stop it from getting worse.
I received a remarkably quick reply from Hopkins via email:
**********
Ms. _____,
Your situation is very complicated, given possible bilateral trigeminial, occipital neuralgia, and perhaps MS. There is nothing I can recommend at this point, but can say the following. Dr. Y, our neurologist most familiar with complex facial and head pain can be scheduled at ________, but he is scheduling about a year ahead (he is swamped). We see patients with trigeminal neuralgia for surgical procedures, but in a case of MS-related TN, we are typically recommending a rhizotomy (20 minute needle procedure under anesthesia), but this would need to be further evaluated because of the bilaterality of your pain. This in no way addresses occipital neuralgia.
If you are interested in pursuing an evaluation with Dr. Z regarding your TN pain and possible procedures, we could certainly make an appointment. If you want a fresh perspective from a neurologist, then you can call Dr. Y’s office and wait for an appointment. You certainly know that medical conditions are treated with medications or procedures, and I cannot think of any way non-medicine and non-procedure therapy.
Let me know if you want me to assist you with a consultation with Dr. Y.
**********
It was certainly a very nice (and QUICK!) reply, but it's also very depressing. Basically saying there's nothing they can do. I may make an appointment for a year out, just to have a second opinion. I can always cancel it if necessary.
Dam*!! I'm feeling really frustrated. I think I might take the rest of the afternoon off with sick time. I can barely function anyway.
I am so sorry!! "Sensory" pain doesn't qualify as pain per your doctor?? Wow, sounds like you need to try and find another one. I know this is easier to say than to do but wow, there is a major disconnect with your doctor, treatment and you.
Know that we are with you here. Most of us have stories to tell and can definately relate to the pain of whatever it is we have and trying to keep our lives moving forward.
None of us know where we are going to be 5 months, 5 years or 20 years from now. All we can do is make the best decisions we can as they come along keeping in mind our future. YOU are your best advocate. Talk to friends, family, whatever connections you have. Use them and get someone who is going to help you and be on your side.
Thoughts and prayers for you.
Julie
Know that we are with you here. Most of us have stories to tell and can definately relate to the pain of whatever it is we have and trying to keep our lives moving forward.
None of us know where we are going to be 5 months, 5 years or 20 years from now. All we can do is make the best decisions we can as they come along keeping in mind our future. YOU are your best advocate. Talk to friends, family, whatever connections you have. Use them and get someone who is going to help you and be on your side.
Thoughts and prayers for you.
Julie
Also, I don't think any DMD will help this symptom. I wouldn't want you to put all your hopes on gertting an MS diagnosis and going on one of the meds.
From what I've read, Tegretol is your best bet, whether or not you have an MS diagnosis. Maybe your dose should be increased. I do understand that you fear being labeled as a drug-seeker, but you have to do what you have to do.
ess
From what I've read, Tegretol is your best bet, whether or not you have an MS diagnosis. Maybe your dose should be increased. I do understand that you fear being labeled as a drug-seeker, but you have to do what you have to do.
ess
I've heard that NYU is good, but don't remember individual doctors. Try a PM to monotreme, whose husband was diagnosed there.
Are you in Northern VA? DC has several good MS centers. Try a PM to Sarahsmom in that case.
Hopkins requires all kinds of doctors' reports, test results, and so on. They may refer you to the MS clinic, regardless. That might be a good thing. Have you had 3T MRIs?
In your shoes, I'd be absolutely trying any and all new neuros who might listen. I'd ditch any neuro who discounts (even somewhat) sensory symptoms. That's a sign of a less-than-confident doctor.
Keep trying. We're with you.
ess
Are you in Northern VA? DC has several good MS centers. Try a PM to Sarahsmom in that case.
Hopkins requires all kinds of doctors' reports, test results, and so on. They may refer you to the MS clinic, regardless. That might be a good thing. Have you had 3T MRIs?
In your shoes, I'd be absolutely trying any and all new neuros who might listen. I'd ditch any neuro who discounts (even somewhat) sensory symptoms. That's a sign of a less-than-confident doctor.
Keep trying. We're with you.
ess
(((Steph))),
I am so so sorry about the pain you are going through. You know, I know exactly how you feel, with all that pain and still being a mom to your kids, and continuing life as it goes.
I too have young kids, 4, ages 7-14. It is tough.
Being on the DMD I do have hopes that it will hopefully control the face pain. I have been on Copaxone about 1 year. I don't know why your neuro is not helping you out more here. (Not that a DMD "fixes" this, but their is a thought that it can keeping it at bay and hopefully stop it from progressing.)
The new neuro I recently saw about my pain, said Copaxone is one of the best ways (DMD) to hopefully prevent the face pain from worsening.
I would get a second opinion from a different Neurologist. For me the pain is unbearable at times, and it does make me feel "mentally" better to know that all is being done that can be done at the moment.
You can be DX without the MRI showing lesions. There are lesions that don't always show up on the MRI. Both my MS neuro and my New "pain" neuro, told me that even though they dont see lesions on my cranial nerves with the MRI, the lesions are DEFINITELY there due to my symptoms. They both told me the lesions are too small to see, and my treatment is not in accordance with the MRI.
Thinking of you and wishing you well,
Michelle
I am so so sorry about the pain you are going through. You know, I know exactly how you feel, with all that pain and still being a mom to your kids, and continuing life as it goes.
I too have young kids, 4, ages 7-14. It is tough.
Being on the DMD I do have hopes that it will hopefully control the face pain. I have been on Copaxone about 1 year. I don't know why your neuro is not helping you out more here. (Not that a DMD "fixes" this, but their is a thought that it can keeping it at bay and hopefully stop it from progressing.)
The new neuro I recently saw about my pain, said Copaxone is one of the best ways (DMD) to hopefully prevent the face pain from worsening.
I would get a second opinion from a different Neurologist. For me the pain is unbearable at times, and it does make me feel "mentally" better to know that all is being done that can be done at the moment.
You can be DX without the MRI showing lesions. There are lesions that don't always show up on the MRI. Both my MS neuro and my New "pain" neuro, told me that even though they dont see lesions on my cranial nerves with the MRI, the lesions are DEFINITELY there due to my symptoms. They both told me the lesions are too small to see, and my treatment is not in accordance with the MRI.
Thinking of you and wishing you well,
Michelle
I'm on three anticonvulsant medications for the pain (gabapentin, lyrica, and tegretol) and I have some percocet for severe "breakthrough" pain. I always worry with narcotics so I try to take these sparingly, but I've taken 22 in the past three and a half weeks. So clearly the regular meds aren't working. I am titrating up the dose of tegretol.
I have been to the ER with a pain level of 9. It was a crap*y experience (I posted about it a few weeks ago). I wouldn't go back with anything less than an 8 or 9, because it ***** the way they treat you like a drug addict.
My neuro gave me a gram of solumedrol on the 6th. It seemed to help a lot for a week, but by Sunday I seemed back to "regular." Ugh! I hate the thought that this is my new "regular"!!!
It's not that my neuro isn't trying. It's just that in the face of all this (and my other neurological issues that are both sensory and motor and observable on exam) no one will affirmatively say they think I have MS despite the MRI and start treating with DMD.
Who at NYU should I try to see? Someone specific or is the whole group good?
I just emailed Johns Hopkins to request an appointment for the TN group. I did mention the MS sx briefly (and the clear MRI) but right now I just want to do something about this pain. I'm like a non-functioning idiot these days...
They should do commercials for doctors: "This is your patient's brain. This is your patient's brain in PAIN." Wonder if that would help...
I have been to the ER with a pain level of 9. It was a crap*y experience (I posted about it a few weeks ago). I wouldn't go back with anything less than an 8 or 9, because it ***** the way they treat you like a drug addict.
My neuro gave me a gram of solumedrol on the 6th. It seemed to help a lot for a week, but by Sunday I seemed back to "regular." Ugh! I hate the thought that this is my new "regular"!!!
It's not that my neuro isn't trying. It's just that in the face of all this (and my other neurological issues that are both sensory and motor and observable on exam) no one will affirmatively say they think I have MS despite the MRI and start treating with DMD.
Who at NYU should I try to see? Someone specific or is the whole group good?
I just emailed Johns Hopkins to request an appointment for the TN group. I did mention the MS sx briefly (and the clear MRI) but right now I just want to do something about this pain. I'm like a non-functioning idiot these days...
They should do commercials for doctors: "This is your patient's brain. This is your patient's brain in PAIN." Wonder if that would help...
Maybe time to find a new neuro? Maybe see if you can get up to NYU? I think I saw a new med out for TN pain
My heart goes out to you - TN is no fun! I've had it!
I hope you feel better soon.
My heart goes out to you - TN is no fun! I've had it!
I hope you feel better soon.
your neurologist is in a 'wait and see' mode while your pain increases! Your pain needs to be addressed soon!
Can you call the neuro or you PCP and tell them how bad the pain is? Or go to the ER to help with the pain, maybe get a shot?
(((Hugs)))
Red
Can you call the neuro or you PCP and tell them how bad the pain is? Or go to the ER to help with the pain, maybe get a shot?
(((Hugs)))
Red
Vent away Stephanie,
I don't have TN but I do have pain, I was just saying to someone else that if these doctors had to live with out symptoms for 1 month they would be changing the way they feel about things, and the way they word things to their patients.
I am so sorry for the pain you are feeling and I really hope that someone does something for you. Will they give you anything for the pain, I don't know what kind of pain you are in but can't they give you something in the meantime to take the edge off?
Good luck to you and I just wanted you to know that I am thinking about you and praying you get better soon.
Hugs
Paula
I don't have TN but I do have pain, I was just saying to someone else that if these doctors had to live with out symptoms for 1 month they would be changing the way they feel about things, and the way they word things to their patients.
I am so sorry for the pain you are feeling and I really hope that someone does something for you. Will they give you anything for the pain, I don't know what kind of pain you are in but can't they give you something in the meantime to take the edge off?
Good luck to you and I just wanted you to know that I am thinking about you and praying you get better soon.
Hugs
Paula
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
