Aa
Disappointing Neuro Appt
Hi All,
Had my appt with 2nd opinion neuro regarding TN or MS. Well he agreed with first neuro that it is Atypical TN but not likely MS. Even with new symptoms of bilateral numbness in all toes equally which has been constant for one month now. Then I have the bilateral TN which when the burning spasms occur they are at same time both sides. Also and the tinnitus both ears is constant. He says usually in MS you will see just one side of body being attacked in extremities, very unlikely to have two lesions causing the same problem. Although that is confusing since bilateral TN is seen a lot with MS patients and I assume that there is either one honking big lesion which they can't see on mine, or two exact seperate lesions. Third option there is no lesion it is a CNS inflammatory response causing all of my symptoms. Now I guess there is some credence, my ANA is high, my CSF was positive for oligoclonal 4 bands and elevated IGG index. I know these findings can be with other autoimmune and infections so that could be my case.
He disagreed with my question that I have information that states you can have lesions you can't see that can still cause my symptoms. He is willing to do some further work up but I know these tests will all come back negative. He is testing B12, folic acid, RPR, free T4, vit D. lyme and protein urine electrophoresis as immunofixation electrophoresis of the serum. Ok I work at the clinic as a nurse, my first big problem knowing to much and thinking to much. But have access to my labs so far B12, free T4 folic acid are all normal. I have had a lyme test one year ago which was neg so doubt that will have changed. all of my routine labs like cbc, metabolic panels, urine screens have always been normal except for ANA. My vit d level is low but whose isnt these days.
He said he will also do a nerve conduction on toes. I did have brisk reflexes of both knees and decreased sensations to cold and pin ***** so at least that is objective and not just me. The tinnitus and TN he can't feel, lucky person cause I can't stand it sometimes. I think my husband even feels sometimes it is in my head or caused by past history of drinking or all the rx medications I take. So am really depressed, if my own husband thinks it is something I caused then what must the doctors be thinking. I know I have enough positive abnormal results like brain lesions, positive CSF, and such but then he says that my brain lesions could have been there for many years and we would have never known if you had not developed numbness and trigeminal neuralgia. Ok so once again I can feel it coming, yes you have these symptoms, but we can't find the reason why so therefore we treat as we are with medications for TN, and pain and etc. I even asked for the IV soludmedrol which I had before x 1 about 6 months ago when I had a relapse and it helped and my first neuro says it won't help. Ok what the hell, if it even diminishes the tinnitus or numbness a little it should be my choice. A few three days of this stuff is not going to kill me but lack of sleep and constant burning pain will kill me eventually.
I know I am whining, and I am sorry but just love your guys respsonses and I don't feel so alone plus I don't feel like a hypochondriac, you start to wonder if it is all in my head because no one can see it, outside I look ok, but inside I am dying, my whole life changed two years ago. I am always tired, pain wears you down, I have to plan anytime I leave the house, make sure I have ice pack, my water spray bottle, my pain spray, and then I get muscular pain so it is a effort. Don't enjoy going out that much, energy way down and I guess I am more depressed recently. Thanks for listening. any advice always welcome..Amers
Had my appt with 2nd opinion neuro regarding TN or MS. Well he agreed with first neuro that it is Atypical TN but not likely MS. Even with new symptoms of bilateral numbness in all toes equally which has been constant for one month now. Then I have the bilateral TN which when the burning spasms occur they are at same time both sides. Also and the tinnitus both ears is constant. He says usually in MS you will see just one side of body being attacked in extremities, very unlikely to have two lesions causing the same problem. Although that is confusing since bilateral TN is seen a lot with MS patients and I assume that there is either one honking big lesion which they can't see on mine, or two exact seperate lesions. Third option there is no lesion it is a CNS inflammatory response causing all of my symptoms. Now I guess there is some credence, my ANA is high, my CSF was positive for oligoclonal 4 bands and elevated IGG index. I know these findings can be with other autoimmune and infections so that could be my case.
He disagreed with my question that I have information that states you can have lesions you can't see that can still cause my symptoms. He is willing to do some further work up but I know these tests will all come back negative. He is testing B12, folic acid, RPR, free T4, vit D. lyme and protein urine electrophoresis as immunofixation electrophoresis of the serum. Ok I work at the clinic as a nurse, my first big problem knowing to much and thinking to much. But have access to my labs so far B12, free T4 folic acid are all normal. I have had a lyme test one year ago which was neg so doubt that will have changed. all of my routine labs like cbc, metabolic panels, urine screens have always been normal except for ANA. My vit d level is low but whose isnt these days.
He said he will also do a nerve conduction on toes. I did have brisk reflexes of both knees and decreased sensations to cold and pin ***** so at least that is objective and not just me. The tinnitus and TN he can't feel, lucky person cause I can't stand it sometimes. I think my husband even feels sometimes it is in my head or caused by past history of drinking or all the rx medications I take. So am really depressed, if my own husband thinks it is something I caused then what must the doctors be thinking. I know I have enough positive abnormal results like brain lesions, positive CSF, and such but then he says that my brain lesions could have been there for many years and we would have never known if you had not developed numbness and trigeminal neuralgia. Ok so once again I can feel it coming, yes you have these symptoms, but we can't find the reason why so therefore we treat as we are with medications for TN, and pain and etc. I even asked for the IV soludmedrol which I had before x 1 about 6 months ago when I had a relapse and it helped and my first neuro says it won't help. Ok what the hell, if it even diminishes the tinnitus or numbness a little it should be my choice. A few three days of this stuff is not going to kill me but lack of sleep and constant burning pain will kill me eventually.
I know I am whining, and I am sorry but just love your guys respsonses and I don't feel so alone plus I don't feel like a hypochondriac, you start to wonder if it is all in my head because no one can see it, outside I look ok, but inside I am dying, my whole life changed two years ago. I am always tired, pain wears you down, I have to plan anytime I leave the house, make sure I have ice pack, my water spray bottle, my pain spray, and then I get muscular pain so it is a effort. Don't enjoy going out that much, energy way down and I guess I am more depressed recently. Thanks for listening. any advice always welcome..Amers
Have my second neuro appointment tomorrow with the "new guy", will get results on blood tests, he did basics to rule out some other causes. I hope if those are negative he is still willing to do more testing. Maybe a nerve test for all my numb toes. He did not do a ACE test for sarcoidosis since many of symptoms Quix said could be the mimic "neurosarcoidosis". I will let you know, I sure hope he does not let me down as well, I am so tired of this and feeling like they think this is in my head. When I try to site specific research they act like I don't know anything..well you all know what I mean.
Quix is there a test for tinnitus that proves it is from a lesion or CNS inflammation. I am going crazy, I want to try IV steroids again and plan on asking him, it is my body and if there is the slightest chance it will help with tinnitus and parasthesias I should have the right to try it, well that is my opinion.
For all you undiagnosed I can truly empathize and pray for your answers as well. To those of you diagnosed I pray for your continued strength to fight this disease.
Amy
Quix is there a test for tinnitus that proves it is from a lesion or CNS inflammation. I am going crazy, I want to try IV steroids again and plan on asking him, it is my body and if there is the slightest chance it will help with tinnitus and parasthesias I should have the right to try it, well that is my opinion.
For all you undiagnosed I can truly empathize and pray for your answers as well. To those of you diagnosed I pray for your continued strength to fight this disease.
Amy
Bialateral TN means you have an irritation from the Trigeminal Nerve "on" each side.
sorry
Q
sorry
Q
My head is all funked up from writing today.
Bilateral = Both Sides
Bialateral TN means you have an irritation from the Trigeminal Nerve and each side. These are separate nerves arrising from the brainstem in separate places - one on each side of the brainstem. In MS, each would have to be a separate lesion. Thus they would each act differently.
You could have TN (even bilaterally) and paresthesias in all extremities - or just some - from Lyme Disease. That is the one that comes to mind.
Quix
Bilateral = Both Sides
Bialateral TN means you have an irritation from the Trigeminal Nerve and each side. These are separate nerves arrising from the brainstem in separate places - one on each side of the brainstem. In MS, each would have to be a separate lesion. Thus they would each act differently.
You could have TN (even bilaterally) and paresthesias in all extremities - or just some - from Lyme Disease. That is the one that comes to mind.
Quix
Hi Quix,
I am responding to an old post from you but was waiting for some labs to come back. So far:
B12 was in the 700's
folic acid-normal, TSH-normal, CBC-normal, lyme titer -normal (but not Western bloc)
Calcium low 26, serum immunofixation electrophoresis : no monoclonal bands, urine protein electrophoresis: no monoclonal bands, waitng for urine immunofixation but have no idea what difference is. LP was two years ago and they did not do fungal. He did __not__order a ACE darn it.
I am wondering from my reading about neurosarcoidosis if that is what I have.
Also could you have TN and bilateral parasthesias in toes from just inflammation from lets say a bacteria or virus? I thought bilateral TN means you have lesions but they can''t see.
Since all tests are negative so far I am guessing neuro is not going to be helpful. I am just looking for a answer so I make sure nothing is missed and I should not be on any other medications.
On one more note, I have had a few spasms lately last 2-3 months right below sternum and in rib areas, usually on right side, feels like a huge squeeze, makes me have to deep breathe, sometimes during it my heart really pounds hard too. It goes away though. Does that relate to neurosarcoidosis?
Thanks Amers
I am responding to an old post from you but was waiting for some labs to come back. So far:
B12 was in the 700's
folic acid-normal, TSH-normal, CBC-normal, lyme titer -normal (but not Western bloc)
Calcium low 26, serum immunofixation electrophoresis : no monoclonal bands, urine protein electrophoresis: no monoclonal bands, waitng for urine immunofixation but have no idea what difference is. LP was two years ago and they did not do fungal. He did __not__order a ACE darn it.
I am wondering from my reading about neurosarcoidosis if that is what I have.
Also could you have TN and bilateral parasthesias in toes from just inflammation from lets say a bacteria or virus? I thought bilateral TN means you have lesions but they can''t see.
Since all tests are negative so far I am guessing neuro is not going to be helpful. I am just looking for a answer so I make sure nothing is missed and I should not be on any other medications.
On one more note, I have had a few spasms lately last 2-3 months right below sternum and in rib areas, usually on right side, feels like a huge squeeze, makes me have to deep breathe, sometimes during it my heart really pounds hard too. It goes away though. Does that relate to neurosarcoidosis?
Thanks Amers
Oh, and ess is right when this neuro says that any significant lesion can be seen on MRI. The MRIs are not that good. My MS neuros scoff at that entire notion. My current one feels that many, if not most, of the lesions in MS still can't be seen.
If your knees have pathologically brisk reflexes (not just normally brisker than usual) then you have a spinal cord lesion - PERIOD. If one can be seen, then fine. If one can't, you still know it's there.
ON can be confirmed by exam, by color desat cards, by formal field testing and by VEP. If the MRI shows a lesion, then fine. If it doesn't ON is still there. Heck, I have optic nerve atrophy from prior asymptomatic optic neuritis. Just because I never had an MRI lesion on the optic nerve, it doesn't mean that I don't have the proven atrophy on OCT.
BINO (bilateral internuclear ophthalmoplegia) can be diagnosed and is very characteristic of MS. If there is a lesion that shows the lesion in the optic nuclei, then fine. If there isn't, you still have the double vision and the pupillary defect.
Point made?
Quix
If your knees have pathologically brisk reflexes (not just normally brisker than usual) then you have a spinal cord lesion - PERIOD. If one can be seen, then fine. If one can't, you still know it's there.
ON can be confirmed by exam, by color desat cards, by formal field testing and by VEP. If the MRI shows a lesion, then fine. If it doesn't ON is still there. Heck, I have optic nerve atrophy from prior asymptomatic optic neuritis. Just because I never had an MRI lesion on the optic nerve, it doesn't mean that I don't have the proven atrophy on OCT.
BINO (bilateral internuclear ophthalmoplegia) can be diagnosed and is very characteristic of MS. If there is a lesion that shows the lesion in the optic nuclei, then fine. If there isn't, you still have the double vision and the pupillary defect.
Point made?
Quix
Well, you bring up some hard questions.
Your neuro is correct in his assessments that having so many perfectly bilateral symptoms at the very beginning of MS would be VERY atypical. Nothing is impossible with MS, but both feet and toes being numb means that you have two random lesions that hit on each side of the CNS in EXACTLY the same place. The same goes for the Trigeminal Neuralgia. You would have to have two separate, random lesions affecting both the right and left Trigeminal Nerves in exactly the same places. I have read that this never happens, though I am not a believer in "never". It would be so odd, though for you to have two sets of identical simultaneous lesions.
Now, MS doesn't just cause problems on one side of the body. Lesions can occur anywhere and are often bilateral, even in the beginning. But, the lesions on each side are not usually identical to one another. I do not think that the TN lesions could actually be one big straight across lesion. This would have to be a truly big, honking lesion that would include many more very important nerve fibers and you would be much more symptomatic. Plus, it would, as you say, likely be visible on the MRI. Add to this the possible bilateral problems with the Acoustic Nerve (CN VIII)
Now, the elevated IgG Index and the 4 Oligoclonal Bands are highly suggestive of MS. This confuses the whole picture. That kind of band production is not seen frequently in most of the other inflammatory diseases.
Lyme can do this and the kind of testing they do routinely for Lyme is inadequate for later cases. the Lyme people insist that it takes a lab doing the Western Blot that routinely tests for - and reports - the specific bands of Lyme. They always state that Igenex is the gold standard. I don't know if that is really true, but this is not an area of expertise for me. Lyme is known for causing bilateral brainstem lesions, especially the Facial Nerve (CN VII) causing bilateral Bell's Palsy.
In fact, my reference for mimics states that multiple cranial neuropathies (multiple cranial nerve lesions) is a Big-Time, major Red Flag to look elsewhere than MS such as Lyme Disease, chronic mengingitis (including tuberculous), and Neurosarcoidosis.
But, other than the odd symmetricality of your symptoms, you certainly have the 2 or more relapses, evidence of multiple areas of the CNS being affected, lesions consistent with MS (and "consistent with" is all that is needed), a thorough rule-out, and very positive LP - this sounds amazingly like MS.
Other mimics? The high ANA is suggestive that it is causing disease. 1:640 is in the realm that you would look at it and believe that it is part of your illness. Do you have any arthritis other than degenerative (old age) stuff? Any rashes, fever, mouth ulcers, weight loss, hair loss, dry eyes, dry mouth, cough, swollen lymph nodes?
So, a few other things that you could look at would be
Lyme - send a Western Blot to Igenex (you could go over to the Lyme Forum and discuss your case with them)
NeuroSarcoidosis - ACE (Angiotensin Converting Enzyme) level, chest Xray and possibly CT of chest. Skin testing for anergy ( failure to mount a response to things you should be immune to)
B12 level - check to see if it is in the range where 10-15% of the population is called "normal", but is actually neurologically symptomatic (230 - 450). If so, begin aggressive supplementation.
Sero-negative Sjogren's - (if you have dry eyes and mouth) lip biopsy
Chronic Meningitis - check to make sure that your LP was sent for fungal cultures and for AFB stain and tuberculosis culture (takes 6 to 10 weeks to grow).
Get a PPD - may be negative in the case of Sarcoidosis.
This is all I could think of for the set of things that you told us. Some of the things I mentioned are very rare and some are not.
If your neuro would like the article on which I based this answer here is the citation:
"Multiple Sclerosis", 2008;14: 1157-1174
You sound so much like MS, except for the three instances where you would have to have random, perfectly symmetrical lesions on each side. That would be a really weird occurrence.
I hope this helps.
Quix
Your neuro is correct in his assessments that having so many perfectly bilateral symptoms at the very beginning of MS would be VERY atypical. Nothing is impossible with MS, but both feet and toes being numb means that you have two random lesions that hit on each side of the CNS in EXACTLY the same place. The same goes for the Trigeminal Neuralgia. You would have to have two separate, random lesions affecting both the right and left Trigeminal Nerves in exactly the same places. I have read that this never happens, though I am not a believer in "never". It would be so odd, though for you to have two sets of identical simultaneous lesions.
Now, MS doesn't just cause problems on one side of the body. Lesions can occur anywhere and are often bilateral, even in the beginning. But, the lesions on each side are not usually identical to one another. I do not think that the TN lesions could actually be one big straight across lesion. This would have to be a truly big, honking lesion that would include many more very important nerve fibers and you would be much more symptomatic. Plus, it would, as you say, likely be visible on the MRI. Add to this the possible bilateral problems with the Acoustic Nerve (CN VIII)
Now, the elevated IgG Index and the 4 Oligoclonal Bands are highly suggestive of MS. This confuses the whole picture. That kind of band production is not seen frequently in most of the other inflammatory diseases.
Lyme can do this and the kind of testing they do routinely for Lyme is inadequate for later cases. the Lyme people insist that it takes a lab doing the Western Blot that routinely tests for - and reports - the specific bands of Lyme. They always state that Igenex is the gold standard. I don't know if that is really true, but this is not an area of expertise for me. Lyme is known for causing bilateral brainstem lesions, especially the Facial Nerve (CN VII) causing bilateral Bell's Palsy.
In fact, my reference for mimics states that multiple cranial neuropathies (multiple cranial nerve lesions) is a Big-Time, major Red Flag to look elsewhere than MS such as Lyme Disease, chronic mengingitis (including tuberculous), and Neurosarcoidosis.
But, other than the odd symmetricality of your symptoms, you certainly have the 2 or more relapses, evidence of multiple areas of the CNS being affected, lesions consistent with MS (and "consistent with" is all that is needed), a thorough rule-out, and very positive LP - this sounds amazingly like MS.
Other mimics? The high ANA is suggestive that it is causing disease. 1:640 is in the realm that you would look at it and believe that it is part of your illness. Do you have any arthritis other than degenerative (old age) stuff? Any rashes, fever, mouth ulcers, weight loss, hair loss, dry eyes, dry mouth, cough, swollen lymph nodes?
So, a few other things that you could look at would be
Lyme - send a Western Blot to Igenex (you could go over to the Lyme Forum and discuss your case with them)
NeuroSarcoidosis - ACE (Angiotensin Converting Enzyme) level, chest Xray and possibly CT of chest. Skin testing for anergy ( failure to mount a response to things you should be immune to)
B12 level - check to see if it is in the range where 10-15% of the population is called "normal", but is actually neurologically symptomatic (230 - 450). If so, begin aggressive supplementation.
Sero-negative Sjogren's - (if you have dry eyes and mouth) lip biopsy
Chronic Meningitis - check to make sure that your LP was sent for fungal cultures and for AFB stain and tuberculosis culture (takes 6 to 10 weeks to grow).
Get a PPD - may be negative in the case of Sarcoidosis.
This is all I could think of for the set of things that you told us. Some of the things I mentioned are very rare and some are not.
If your neuro would like the article on which I based this answer here is the citation:
"Multiple Sclerosis", 2008;14: 1157-1174
You sound so much like MS, except for the three instances where you would have to have random, perfectly symmetrical lesions on each side. That would be a really weird occurrence.
I hope this helps.
Quix
I haven't been feeling well, but I do see this and will be answering you soon. I am so sorry.
Q
Q
What if we take MS out of the equation just to look at actual results:
bilateral aytpical TN (spasms seem to occur together, one side will start but then other side joins in) it a party;)
CSF: 4 oligoclonal bands and postive IGG index
Brain MRI's: all 5 show abnormal T2 signal lesions in sub-cortical area of left and right insula, periventricular area and front lobe white matter. These have not changed per radiologist since Dec 07
Autoimmune problems: raynauds, undiffentiated connective tissue disorder, positve ANA most recent 1:640, but recent negative tests for lupus, sjoren, scleroderma, anti phosphoid, vasculitis, anti cardiolipins.
Two relapses with returning parasthesia to lips and tongue with increase in TN symptoms
Third relapse one month ago with facial parasthesias again but now also with constant bilateral tinnitus, and constant bilateral, equal parasthesia of all toes.
brisk reflexes, decreased sensation in toes to temp and pin *****
so far normal B12, normal thyroid, normal CBC, normal folic acid, normal electroyltes
(pending lyme, pending serum electrophoresis immunofixation and urine protein electrophoresis and RPR.
Okay anyone like to hazard a quess, that exludes MS:) seriously I am lost
but it may strike a cord with one of you:) Thanks Amers
bilateral aytpical TN (spasms seem to occur together, one side will start but then other side joins in) it a party;)
CSF: 4 oligoclonal bands and postive IGG index
Brain MRI's: all 5 show abnormal T2 signal lesions in sub-cortical area of left and right insula, periventricular area and front lobe white matter. These have not changed per radiologist since Dec 07
Autoimmune problems: raynauds, undiffentiated connective tissue disorder, positve ANA most recent 1:640, but recent negative tests for lupus, sjoren, scleroderma, anti phosphoid, vasculitis, anti cardiolipins.
Two relapses with returning parasthesia to lips and tongue with increase in TN symptoms
Third relapse one month ago with facial parasthesias again but now also with constant bilateral tinnitus, and constant bilateral, equal parasthesia of all toes.
brisk reflexes, decreased sensation in toes to temp and pin *****
so far normal B12, normal thyroid, normal CBC, normal folic acid, normal electroyltes
(pending lyme, pending serum electrophoresis immunofixation and urine protein electrophoresis and RPR.
Okay anyone like to hazard a quess, that exludes MS:) seriously I am lost
but it may strike a cord with one of you:) Thanks Amers
I'm sorry that your husband is taking that attitude. It rings of denial to me, but I know that must be really hard on you and completely frustrating.
It sounds to me like continuing on with this neuro is a waste of time and is more like banging your head against the wall. I'm surprised that the blood tests that he was talking about wasn't ordered first thing to rule out B12 deficiency, Lyme disease, etc. before ordering more invasive and expensive testing. He doesn't sound like he knows what he's doing. Furthermore, you have o-bands, elevated IGG index, brain lesions, TN to name a few things. You've even had an MS diagnosis from your 1st neuro (if I can remember correctly from your other post).
What does he think is causing all of these symptoms and problems? Have you had a lip biopsy to rule out Sjogren's? This can cause an elevated ANA (besides lupus), brain lesions, etc.. Again, this should have been ruled out before a spinal tap, though.
I'm sorry about your visit. It does sound like you need to see someone else. Did your first neuro seem competent?
Deb
It sounds to me like continuing on with this neuro is a waste of time and is more like banging your head against the wall. I'm surprised that the blood tests that he was talking about wasn't ordered first thing to rule out B12 deficiency, Lyme disease, etc. before ordering more invasive and expensive testing. He doesn't sound like he knows what he's doing. Furthermore, you have o-bands, elevated IGG index, brain lesions, TN to name a few things. You've even had an MS diagnosis from your 1st neuro (if I can remember correctly from your other post).
What does he think is causing all of these symptoms and problems? Have you had a lip biopsy to rule out Sjogren's? This can cause an elevated ANA (besides lupus), brain lesions, etc.. Again, this should have been ruled out before a spinal tap, though.
I'm sorry about your visit. It does sound like you need to see someone else. Did your first neuro seem competent?
Deb
COMMUNITY LEADER
Welcome to limbo land, here we do the limbo shuffle in any way we can, not a fun place on your own but here you'll be one of many, we like chocolate cake and whine :-) sorry for what your going through, no fun but we'll try and keep you smiling!!
Hmmmmm, what is the go with the 0 bands, are they not proof of SOMETHING?, which I might add has nothing what so ever to do with mental health, cant 'imagine' the blood results can you! Lupus from what i remember could be a big red flag here, everything goes into both lupus and ms, apart from the ANA, now that could just be neg next test and it could just be a red herring, not uncommon to have pos and neg ANA test results.
Still i'm thinking MS, bilateral TN, brain lesions, 0 bands, PN (peripheral neuropathy), Paresthesia, brisk reflexes all you need now is a dirty great big neon sign saying look here! Is getting anothe opinion out of the question, neuro does seem to have attended a few too many tiddly winks convensions.
Cheers.....JJ
Hmmmmm, what is the go with the 0 bands, are they not proof of SOMETHING?, which I might add has nothing what so ever to do with mental health, cant 'imagine' the blood results can you! Lupus from what i remember could be a big red flag here, everything goes into both lupus and ms, apart from the ANA, now that could just be neg next test and it could just be a red herring, not uncommon to have pos and neg ANA test results.
Still i'm thinking MS, bilateral TN, brain lesions, 0 bands, PN (peripheral neuropathy), Paresthesia, brisk reflexes all you need now is a dirty great big neon sign saying look here! Is getting anothe opinion out of the question, neuro does seem to have attended a few too many tiddly winks convensions.
Cheers.....JJ
Thank you all for your encouraging comments to hang in there, here where someone understands...I am trying to stay optimistic, all I want is an answer but I know I am complicated case so I guess I will have to wait..
Thanks again...if anyone has any ideas what it could be just throw it out there, who knows maybe you all will have more ideas than my stupido neuro's...lol
Thanks again...if anyone has any ideas what it could be just throw it out there, who knows maybe you all will have more ideas than my stupido neuro's...lol
I hope you get through this terrible time with your pain and no answers... I know how you feel.. it took me over 4 years to find answers and I just know how you feel.. you know your body and if it's not right..
sometimes you need to take a break away from Dr and tests...if it's not happening.. but always listen to your body and keep a record of your symptoms if they are worse.
hang in there and let us know how thing go..
wobbly
dx
sometimes you need to take a break away from Dr and tests...if it's not happening.. but always listen to your body and keep a record of your symptoms if they are worse.
hang in there and let us know how thing go..
wobbly
dx
Dido absolutely, I share your anguish and frustration too!!! Hope your pain eases soon!!!!
Hi, Amers. Whine all you want here, you certainly have good reasons.
It will be awkward if you work with this neuro, but you have to dump him if the latest round of tests comes up normal. This guy is just plain wrong. There is loads of research, as you know, showing that bilateral TN is most unusual except with MS.
But especially, he's super wrong that all lesions can be detected thru MRI. NO knowlegeable MS specialist will say that. If he has been practicing since before the invention of MRIs, how did he diagnose MS? What a jerk.
He's right that it's unusual (but NOT impossible) to have equally distributed symptoms bilaterally. I really don't know if you have MS, but I do believe you have an illness which is NOT a psychiatric one. Your husband's reaction is unfortunately all too common. People who have no clue are often eager to attribute such symptoms to a psychological cause. My answer to that is to let them spend one day experiencing what you do, every day, and see how their tune changes.
Since we can't make that happen, the next best thing to do is to stay here for support, information and encouragement. We won't let you down.
Sending good wishes,
ess
It will be awkward if you work with this neuro, but you have to dump him if the latest round of tests comes up normal. This guy is just plain wrong. There is loads of research, as you know, showing that bilateral TN is most unusual except with MS.
But especially, he's super wrong that all lesions can be detected thru MRI. NO knowlegeable MS specialist will say that. If he has been practicing since before the invention of MRIs, how did he diagnose MS? What a jerk.
He's right that it's unusual (but NOT impossible) to have equally distributed symptoms bilaterally. I really don't know if you have MS, but I do believe you have an illness which is NOT a psychiatric one. Your husband's reaction is unfortunately all too common. People who have no clue are often eager to attribute such symptoms to a psychological cause. My answer to that is to let them spend one day experiencing what you do, every day, and see how their tune changes.
Since we can't make that happen, the next best thing to do is to stay here for support, information and encouragement. We won't let you down.
Sending good wishes,
ess
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