Aa
Coming to the end of her tether
My partner suffers from Multiple Sclerosis but in answering this question please try not to focus on that, as so many do in the professional field. She had laser eye surgery (lasik) Sept 2010, complications of Optic Neuritis arose two days later. Diagnosed with Optic Neuritis Oct 2010 (second bout since diagnosed with MS 6 years ago). Had eye infection (related to lasik surgery) in Nov 2010, given antibiotic eye drops. Diagnosed with Shingles (located halfway down back on left side) Dec 2010, given Aciclovir. Suspected Flu in Jan 2011, given Tamiflu. Diagnosed with Sinusitis in Feb 2011, given Eurythromycin. Current symptoms include.. severe chronic headache at rear of head, severe chronic pain behind eyes, severe chronic facial pain (forehead, nose, cheeks), tinitus (blocked ear), weak muscles esp. down arms and legs, severe chronic neck & back pain, pain switching between left and right side of body, symptoms often worse in morning, severe loss of appetite, nausea without vomiting, coughing up phlegm, extreme photophobia, blurry vision. Has been given MRI scan (awaiting results), various doctors given various answers but has had no continuity - some think MS related, some think upper respiratory infection/MS, some just don't know. All bloods are normal, no fever present, no rash present.
My partner does not believe it to be wholly MS related, she says it feels different.. that sounded strange to me at first as some of the symptoms are undeniably MS related and she herself admits that, but she knows her body and her MS symptoms well (better than doctors do). Although I am not completely disregarding MS as possible diagnosis (been suggested it is a new development, perhaps new lesions formed), I do believe what she is saying.
My partner does not believe it to be wholly MS related, she says it feels different.. that sounded strange to me at first as some of the symptoms are undeniably MS related and she herself admits that, but she knows her body and her MS symptoms well (better than doctors do). Although I am not completely disregarding MS as possible diagnosis (been suggested it is a new development, perhaps new lesions formed), I do believe what she is saying.
COMMUNITY LEADER
I think she could be right, she would know her body and her MS better than anyone on earth. Its not uncommon though for MSers to get really bad when they do get an infection, plus their MS ramps up too. I read a study the other day that mentioned MSers seem to cough for weeks and sometimes months, long after the infection is cleared. No definite conclusions as to why but esophageal muscle spasms are thought to be part of the problem. Its also possible that this is a new sx for her, MS related but still new to her or even a shifted or worsened sx that is now different to what she's become familiar with.
We often mention MS as being a MySterious disease, it doesn't play by the rules, thats for sure. I hope the answers come soon and she gets some relief!
Cheers........JJ
We often mention MS as being a MySterious disease, it doesn't play by the rules, thats for sure. I hope the answers come soon and she gets some relief!
Cheers........JJ
Hello and Welcome,
I think that you have to remember that not everything is MS related.
I too have blocked ears at the moment:/ but it has nothing to do with MS.
As JJ said this is a MySterious disease, and maybe your partner knows what is going on - and realises that it not MS related.
I would however urge your partner to go and visit the Neuro, just to check things over, and see what they have to say.
Debs
I think that you have to remember that not everything is MS related.
I too have blocked ears at the moment:/ but it has nothing to do with MS.
As JJ said this is a MySterious disease, and maybe your partner knows what is going on - and realises that it not MS related.
I would however urge your partner to go and visit the Neuro, just to check things over, and see what they have to say.
Debs
Hi. It seems your partner is weakened by a long series of respiratory infections. A chronic sinus thing could explain a lot of the head and face symptoms. Maybe a CT scan would help?
Of course it is likely to be more complicated than that. As others have said, several things may be going on, especially when you consider that infections often trigger MS flares.
She IS the best judge of her body. I think going full bore on both fronts is what I'd do. Find the cause of the new things while treating the MS symptoms. Not with steroids, though.
Let us know how she does.
ess
Of course it is likely to be more complicated than that. As others have said, several things may be going on, especially when you consider that infections often trigger MS flares.
She IS the best judge of her body. I think going full bore on both fronts is what I'd do. Find the cause of the new things while treating the MS symptoms. Not with steroids, though.
Let us know how she does.
ess
I have MS and severe sinus problems.
My sinus problems cause bad headaches which go into migraines which are both typical and atypical. The atypical effect my vision and make me go numb in a different way down my left side. I sometimes get so sick to my stomach I throw up for days. My eyes are so sensitive to light I will often where an eye patch on the left which is the worst when I get a headache. The area under my eyes hurts to the touch. I am allergic to just about everything. I also get vertigo and no one knows whether that is sinus or MS. I also have asthma.
I flush my nose out with warm saline several times a day. I take generic Musinex twice a day to thin out the mucus. I take generic zyrtec for allergies the others dry my sinuses out which makes the pain worse. I also am on migraine medicine. If I keep up the saline and musinex I do not need the migraine medicine that much.
My theory on my condition and it is only a theory is the sinus inflammation ends up especially when it gets into migraine may be setting of nerves triggering the nerve damage in my brain.
The difference between MS symptoms and sinus/migraine is with sinus/ migraine treatment the symptoms go away.
Alex
My sinus problems cause bad headaches which go into migraines which are both typical and atypical. The atypical effect my vision and make me go numb in a different way down my left side. I sometimes get so sick to my stomach I throw up for days. My eyes are so sensitive to light I will often where an eye patch on the left which is the worst when I get a headache. The area under my eyes hurts to the touch. I am allergic to just about everything. I also get vertigo and no one knows whether that is sinus or MS. I also have asthma.
I flush my nose out with warm saline several times a day. I take generic Musinex twice a day to thin out the mucus. I take generic zyrtec for allergies the others dry my sinuses out which makes the pain worse. I also am on migraine medicine. If I keep up the saline and musinex I do not need the migraine medicine that much.
My theory on my condition and it is only a theory is the sinus inflammation ends up especially when it gets into migraine may be setting of nerves triggering the nerve damage in my brain.
The difference between MS symptoms and sinus/migraine is with sinus/ migraine treatment the symptoms go away.
Alex
Here are some things that puzzle me because they seem unusual (at least to me).
LASIK procedure in 9/10 is blamed for an infection that doesn't show up until 11/10 (isn't healing from that usually pretty fast?)
Usual treatment for ON is IV steroids. I don't know if they were used. Certainly understand if they weren't given immediately after LASIK.
Shingles visible on left trunk in 12/10 followed by a multitude of head and neck symptom (not to mention the ^fatigue and GI and respiratory symptoms.
Your girl has certainly had enough stress to get old MS symptoms stirred up and maybe even start adding some new ones. If she has brain stem lesions from the MS it could be the issues in her face and around her eyes are related to that.
Another possible option is that the shingles didn't confine themselves to her trunk. Although you see shingles erupt on the skin, the herpes virus that causes it hangs out in the nerves until triggered. The blistery rash follows the nerve pathways. That's why it is so painful.
It isn't unheard of to have herpetic pain without the rash. If you want "outside the box" thinking, consider that herpetic pain could be involved in triggering the cranial nerves that reach out across the face.
It is also possible to have herpes virus in the eye. With surgery so closely followed by a shingles outbreak, I would want to be sure an ophthalmologist had cleared this off the menu of possibilities.
The after effects of Shingles can be very hard to treat and last long after the blisters heal. Look up post-herpetic syndrome to learn more and check my info for accuracy.
I'm no infection expert and I'm probably way off here. The point is, your partner knows her body and knows what's happening isn't right. She is fortunate to have you beside her, accepting what she describes is gospel truth. Many here long for a partner like you who is willing to help maneuver over and around health care hurdles. Please don't stop until you find the doctor who will understand this and work on figuring out the cause and how to relieve the suffering. Relief is long overdue, imo.
Let us know please and thank you for loving your girl so actively.
Mary
LASIK procedure in 9/10 is blamed for an infection that doesn't show up until 11/10 (isn't healing from that usually pretty fast?)
Usual treatment for ON is IV steroids. I don't know if they were used. Certainly understand if they weren't given immediately after LASIK.
Shingles visible on left trunk in 12/10 followed by a multitude of head and neck symptom (not to mention the ^fatigue and GI and respiratory symptoms.
Your girl has certainly had enough stress to get old MS symptoms stirred up and maybe even start adding some new ones. If she has brain stem lesions from the MS it could be the issues in her face and around her eyes are related to that.
Another possible option is that the shingles didn't confine themselves to her trunk. Although you see shingles erupt on the skin, the herpes virus that causes it hangs out in the nerves until triggered. The blistery rash follows the nerve pathways. That's why it is so painful.
It isn't unheard of to have herpetic pain without the rash. If you want "outside the box" thinking, consider that herpetic pain could be involved in triggering the cranial nerves that reach out across the face.
It is also possible to have herpes virus in the eye. With surgery so closely followed by a shingles outbreak, I would want to be sure an ophthalmologist had cleared this off the menu of possibilities.
The after effects of Shingles can be very hard to treat and last long after the blisters heal. Look up post-herpetic syndrome to learn more and check my info for accuracy.
I'm no infection expert and I'm probably way off here. The point is, your partner knows her body and knows what's happening isn't right. She is fortunate to have you beside her, accepting what she describes is gospel truth. Many here long for a partner like you who is willing to help maneuver over and around health care hurdles. Please don't stop until you find the doctor who will understand this and work on figuring out the cause and how to relieve the suffering. Relief is long overdue, imo.
Let us know please and thank you for loving your girl so actively.
Mary
Hi there,
Welcome to the forum. I'm glad you found us. Would be nice if all these docs would get together and actually start weeding in, or out a culprit.
She's definitely right to feel this is not her MS working on her. I don't know which way to direct you in regards to getting someone to look at the whole picture except for a really good MD or internist, but what I thought may help if you do find one is if you had a timeline (if she's not done one already).
You gave us some great info already, so I pulled some of that and list an example:
(you can cut and paste this into something to work off of)
~Dx'd w/MS in 2004 (taking disease modifying therapy? if so, place here)
~Lasik in Sept 2010
~Optic Neuritis Oct 2010
~Eye infection (related to lasik surgery) in Nov 2010
~Diagnosed with Shingles Dec 2010
~Diagnosed with Sinusitis in Feb 2011
Current symptoms:
~severe chronic headache at rear of head
~severe chronic pain behind eyes
~severe chronic facial pain (forehead, nose, cheeks)
~tinitus
~weak muscles especially arms and legs
~severe chronic neck & back pain (describe what pain feels like here)
~pain switches between left and right side of body, symptoms often worse in morning
~severe loss of appetite
~nausea without vomiting
~coughing up phlegm
~extreme photophobia and blurry vision
Current testing (what type of doc ordered it)
~MRI scan (brain?)
I sure hope we can help you and she out. You'll find loads of support and info here with us, thanks for joining us.
-Shell
Welcome to the forum. I'm glad you found us. Would be nice if all these docs would get together and actually start weeding in, or out a culprit.
She's definitely right to feel this is not her MS working on her. I don't know which way to direct you in regards to getting someone to look at the whole picture except for a really good MD or internist, but what I thought may help if you do find one is if you had a timeline (if she's not done one already).
You gave us some great info already, so I pulled some of that and list an example:
(you can cut and paste this into something to work off of)
~Dx'd w/MS in 2004 (taking disease modifying therapy? if so, place here)
~Lasik in Sept 2010
~Optic Neuritis Oct 2010
~Eye infection (related to lasik surgery) in Nov 2010
~Diagnosed with Shingles Dec 2010
~Diagnosed with Sinusitis in Feb 2011
Current symptoms:
~severe chronic headache at rear of head
~severe chronic pain behind eyes
~severe chronic facial pain (forehead, nose, cheeks)
~tinitus
~weak muscles especially arms and legs
~severe chronic neck & back pain (describe what pain feels like here)
~pain switches between left and right side of body, symptoms often worse in morning
~severe loss of appetite
~nausea without vomiting
~coughing up phlegm
~extreme photophobia and blurry vision
Current testing (what type of doc ordered it)
~MRI scan (brain?)
I sure hope we can help you and she out. You'll find loads of support and info here with us, thanks for joining us.
-Shell
Thank you all for your kind words and advice. I'll try and answer everyone in what I say but I apologise if I miss you out. Also, I'm from England so if I use language that seems strange to you then that's why! Finally, if it all gets confusing.. as it is extremely confusing, I apologise. Just ask me in your post to clear up the part you don't get. I'll be sure to tell her the 'MySterious' thing.. but I bet she's heard it all before.. it's usually the case that I'm behind with all this stuff!
I've lost count of the trips to consultants, neurologists, admissions to hospital, doctors and so on. As I mentioned in my last post, each person has a different diagnosis. Her neurologist believes it to be a flare up of her MS, prescribed her pregabalin in late Jan 2011. Shortly after she went to see doctor and was told she had sinusitis, to stop taking pregabalin and see if things clear up with antibiotics. She said they helped a little, but the severe pain is still there. She was admitted to hospital by our local doctor only a week ago. When the doctors at the hospital did their rounds (she saw two throughout the day), the first believed it to be some kind of respiratory infection and wanted to do further tests. The second that came in the evening believed it was her MS, wanted to do an MRI and wanted to put her on a three day course of steroids. We discussed it and decided against the steroids but accepted the scan. She should avoid steroids like the plague, so I'm told.
So you can see our frustration, nobody can say for sure 'this is what it is, this is how we treat it'. The time-line of things I gave in my last post are of things she has definitely, without question, had. Regarding her eye infection in Nov 2010, the Lasik procedure is less invasive.. however it still takes 6 months to fully heal. The 'danger zone' for infections is the first two weeks, but that doesn't mean to say you can't get an infection after that, only that it won't effect the outcome of the surgery as badly. What they are effectively doing is cutting a flap on your cornea with a laser, shaping the cornea beneath the flap and then placing the flap over the top to heal.
I believe that due to the stress both emotionally and physically of the Lasik procedure, she had an attack of optic neuritis (which can be treated with steroids, but they are apparently not very effective). This in turn weakened her, allowed the eye infection to set in and weaken her further so that the shingles began.. and so on, a domino effect of problems. But as for now, we just don't know what's going on. She is back on pregabalin after the advice given by her MS nurse. She had an MRI scan on Monday, the results will take a further week to come through. Before she was diagnosed with sinusitis I had said to her that the symptoms she is describing are very similar to the symptoms I had when I had sinusitis. There are many symptoms, some that go together and some that don't. For instance, if she sleeps on her left side, the next day the symptoms are on her right side.. MS would not cause this to happen. Nor would MS cause excessive phlegm. But then sinusitis would not switch to opposite sides of her body.
Mary, what you say about the shingles is what we thought it to be in the first place and 'out-of-the-box' thinking is exactly what we need. We kept going to the doctors and saying this but they shrugged it off and said that shingles cannot affect more than one nerve.. to have shingles on her back AND on her face/eye is apparently impossible. The symptoms are very similar though.. I've done a lot of research about 'post herpetic neuralgia' and such but it all boils down to the apparent fact that it cannot affect multiple nerves. The pain associated with post herpetic neuralgia would be localised to the area she had shingles. She has an appointment with an ophthalmologist coming up in March as a follow up to her optic neuritis bout last year so her eyes will be properly checked out then.
The MRI will show us more hopefully, it will also show any sinus infection. I believe it to be a mixture of different things, but some doctors just can't see past the MS.. it's almost as though she has a neon sign above her head saying 'I have MS... my symptoms can't possibly be anything but MS'. Even her neurologist looked at her in a very patronising way and just said it is you MS. This is a dangerous way to treat people.
Again, thanks for your replies.. you have been great. Sorry for going on about it, but it feels good to get it out and get something back.
Danny
I've lost count of the trips to consultants, neurologists, admissions to hospital, doctors and so on. As I mentioned in my last post, each person has a different diagnosis. Her neurologist believes it to be a flare up of her MS, prescribed her pregabalin in late Jan 2011. Shortly after she went to see doctor and was told she had sinusitis, to stop taking pregabalin and see if things clear up with antibiotics. She said they helped a little, but the severe pain is still there. She was admitted to hospital by our local doctor only a week ago. When the doctors at the hospital did their rounds (she saw two throughout the day), the first believed it to be some kind of respiratory infection and wanted to do further tests. The second that came in the evening believed it was her MS, wanted to do an MRI and wanted to put her on a three day course of steroids. We discussed it and decided against the steroids but accepted the scan. She should avoid steroids like the plague, so I'm told.
So you can see our frustration, nobody can say for sure 'this is what it is, this is how we treat it'. The time-line of things I gave in my last post are of things she has definitely, without question, had. Regarding her eye infection in Nov 2010, the Lasik procedure is less invasive.. however it still takes 6 months to fully heal. The 'danger zone' for infections is the first two weeks, but that doesn't mean to say you can't get an infection after that, only that it won't effect the outcome of the surgery as badly. What they are effectively doing is cutting a flap on your cornea with a laser, shaping the cornea beneath the flap and then placing the flap over the top to heal.
I believe that due to the stress both emotionally and physically of the Lasik procedure, she had an attack of optic neuritis (which can be treated with steroids, but they are apparently not very effective). This in turn weakened her, allowed the eye infection to set in and weaken her further so that the shingles began.. and so on, a domino effect of problems. But as for now, we just don't know what's going on. She is back on pregabalin after the advice given by her MS nurse. She had an MRI scan on Monday, the results will take a further week to come through. Before she was diagnosed with sinusitis I had said to her that the symptoms she is describing are very similar to the symptoms I had when I had sinusitis. There are many symptoms, some that go together and some that don't. For instance, if she sleeps on her left side, the next day the symptoms are on her right side.. MS would not cause this to happen. Nor would MS cause excessive phlegm. But then sinusitis would not switch to opposite sides of her body.
Mary, what you say about the shingles is what we thought it to be in the first place and 'out-of-the-box' thinking is exactly what we need. We kept going to the doctors and saying this but they shrugged it off and said that shingles cannot affect more than one nerve.. to have shingles on her back AND on her face/eye is apparently impossible. The symptoms are very similar though.. I've done a lot of research about 'post herpetic neuralgia' and such but it all boils down to the apparent fact that it cannot affect multiple nerves. The pain associated with post herpetic neuralgia would be localised to the area she had shingles. She has an appointment with an ophthalmologist coming up in March as a follow up to her optic neuritis bout last year so her eyes will be properly checked out then.
The MRI will show us more hopefully, it will also show any sinus infection. I believe it to be a mixture of different things, but some doctors just can't see past the MS.. it's almost as though she has a neon sign above her head saying 'I have MS... my symptoms can't possibly be anything but MS'. Even her neurologist looked at her in a very patronising way and just said it is you MS. This is a dangerous way to treat people.
Again, thanks for your replies.. you have been great. Sorry for going on about it, but it feels good to get it out and get something back.
Danny
~Dx'd w/MS 2004
~Various MS episodes mainly linked with muscular-skeletal symptoms 2004-2010
~Lasik Sept 2010
~Optic Neuritis Oct 2010 (no treatment other than painkillers)
~Eye infection Nov 2010 (related to lasik surgery, given antibiootics)
~Diagnosed with Shingles Dec 2010 (given Aciclovir)
~Suspected Flu Jan 2011 (given Tamiflu)
~Diagnosed with Sinusitis in Feb 2011 (given Eurithromycin)
Current symptoms:
~severe chronic headache at rear of head
~severe chronic pain behind eyes (pain = burning)
~severe chronic facial pain (forehead, nose, cheeks) (pain = burning)
~tinitus (dampened hearing)
~weak muscles especially arms and legs
~severe chronic neck & back pain (pain = burning)
~pain switches between left and right side of body, symptoms often worse in morning
~severe loss of appetite
~nausea without vomiting
~coughing up phlegm
~extreme photophobia and blurry vision
~crying makes some symptoms worse
~sleeping on one side will effect opposite side following day
~severe depression
Current testing
~MRI scan (brain & spinal cord) - ordered by doctor at hospital (awaiting results)
Current medication
~Tramadol
~Pregabalin
Upcoming appointments
~Disease modifying clinic - March 2011
~MS Nurse - Feb 2011
~Ophthalmologist - March 2011
~Various MS episodes mainly linked with muscular-skeletal symptoms 2004-2010
~Lasik Sept 2010
~Optic Neuritis Oct 2010 (no treatment other than painkillers)
~Eye infection Nov 2010 (related to lasik surgery, given antibiootics)
~Diagnosed with Shingles Dec 2010 (given Aciclovir)
~Suspected Flu Jan 2011 (given Tamiflu)
~Diagnosed with Sinusitis in Feb 2011 (given Eurithromycin)
Current symptoms:
~severe chronic headache at rear of head
~severe chronic pain behind eyes (pain = burning)
~severe chronic facial pain (forehead, nose, cheeks) (pain = burning)
~tinitus (dampened hearing)
~weak muscles especially arms and legs
~severe chronic neck & back pain (pain = burning)
~pain switches between left and right side of body, symptoms often worse in morning
~severe loss of appetite
~nausea without vomiting
~coughing up phlegm
~extreme photophobia and blurry vision
~crying makes some symptoms worse
~sleeping on one side will effect opposite side following day
~severe depression
Current testing
~MRI scan (brain & spinal cord) - ordered by doctor at hospital (awaiting results)
Current medication
~Tramadol
~Pregabalin
Upcoming appointments
~Disease modifying clinic - March 2011
~MS Nurse - Feb 2011
~Ophthalmologist - March 2011
When I was a young woman I had many of the symptoms your partner is describing. I had so many sinus infections, we lost count. Finally I seemed to stay with the worse headaches of my life with pain behind my eyes. my neck and back spasming, coughing up phlegm, no appetite, and constant nausea. A good ears, nose and throat man finally dxed that it was an infection that had never been under control. He put me on antibiotics for about three months. Like magic, it disappeared.
Whatever it is, continue the battle. It is worth it.
Whatever it is, continue the battle. It is worth it.
Sounds like we need your 'ears, throat and nose man'!
Quick update: currently looking at 'Trigeminal Neuralgia', how it is linked with sinusitis, how sinusitis is linked with MS, how MS is linked with infections (particularly upper respiratory infections). It all seems to be along the same lines as my partners symptoms, at least to my un-medically trained mind. Lots of morbid stuff about brain infections and so on. Her results from the MRI scan are crucial for a true diagnosis I feel.
She keeps saying 'I wish it was my MS, I know it would go away if it was'. I'm hoping for something, I don't know what.. but she needs to know.
Anyway, my eyes are beginning to go funny.. you know, when you have been at the computer most of the day and you look around you and suddenly everything seems somehow smaller and further away than it is? Or perhaps bigger and closer than it is.. I can't decide! No? Must just be me then! Time for bed I think.
Quick update: currently looking at 'Trigeminal Neuralgia', how it is linked with sinusitis, how sinusitis is linked with MS, how MS is linked with infections (particularly upper respiratory infections). It all seems to be along the same lines as my partners symptoms, at least to my un-medically trained mind. Lots of morbid stuff about brain infections and so on. Her results from the MRI scan are crucial for a true diagnosis I feel.
She keeps saying 'I wish it was my MS, I know it would go away if it was'. I'm hoping for something, I don't know what.. but she needs to know.
Anyway, my eyes are beginning to go funny.. you know, when you have been at the computer most of the day and you look around you and suddenly everything seems somehow smaller and further away than it is? Or perhaps bigger and closer than it is.. I can't decide! No? Must just be me then! Time for bed I think.
HI and welcome!
I thought I'd throw my two cents in the mix by telling you that an MRI is not the test of choice for sinusitis. It often portrays the sinuses as more infected than they are, here is an excerpt with references:
Note: MRI is not as effective as CT in defining the anatomy of the sinuses and therefore is not typically used for suspected acute sinusitis.
Alternative Names
MRI of the sinuses; Magnetic resonance imaging - sinuses; Maxillary sinus MRI; Cavernous sinus MRI
References
Wilkinson ID, Paley MNJ. Magnetic resonance imaging: basic principles. In: Grainger RC, Allison D, Adam, Dixon AK, eds. Diagnostic Radiology: A Textbook of Medical Imaging. 5th ed. New York, NY: Churchill Livingstone; 2008:chap 5.
O’Handley JG, Tobin E, Tagge B. Otorhinolaryngology. In: Rakel RE. Textbook of Family Medicine. 7th ed. Philadelphia, Pa:Saunders Elsevier; 2007:chap 25.
Rosenfeld RM, Andes D, Bhattacharyya N, Cheung D, Eisenberg S, Ganiats TG, et al. Clinical practice guideline: adult sinusitis. Otolaryngol Head Neck Surg. 2007;137:S1-S31.
Hulett KJ, Stankiewicz JA. Primary sinus surgery. In: Cummings CW, Flint PW, Haughey BH, et al. Otolaryngology:Head and Neck Surgery. 4th ed. Philadelphia, Pa: Mosby Elsevier;2005:chap 53.
Update Date: 3/18/2009
Updated by: Benjamin Taragin M.D., Department of Radiology, Montefiore Medical Center Bronx, N.Y. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
I just wanted to add this piece of information to the mix so that the problems are not all blamed on sinuses because an MRI shows inflammation.
Sending wishes for luck in defining the problem,
Ren
I thought I'd throw my two cents in the mix by telling you that an MRI is not the test of choice for sinusitis. It often portrays the sinuses as more infected than they are, here is an excerpt with references:
Note: MRI is not as effective as CT in defining the anatomy of the sinuses and therefore is not typically used for suspected acute sinusitis.
Alternative Names
MRI of the sinuses; Magnetic resonance imaging - sinuses; Maxillary sinus MRI; Cavernous sinus MRI
References
Wilkinson ID, Paley MNJ. Magnetic resonance imaging: basic principles. In: Grainger RC, Allison D, Adam, Dixon AK, eds. Diagnostic Radiology: A Textbook of Medical Imaging. 5th ed. New York, NY: Churchill Livingstone; 2008:chap 5.
O’Handley JG, Tobin E, Tagge B. Otorhinolaryngology. In: Rakel RE. Textbook of Family Medicine. 7th ed. Philadelphia, Pa:Saunders Elsevier; 2007:chap 25.
Rosenfeld RM, Andes D, Bhattacharyya N, Cheung D, Eisenberg S, Ganiats TG, et al. Clinical practice guideline: adult sinusitis. Otolaryngol Head Neck Surg. 2007;137:S1-S31.
Hulett KJ, Stankiewicz JA. Primary sinus surgery. In: Cummings CW, Flint PW, Haughey BH, et al. Otolaryngology:Head and Neck Surgery. 4th ed. Philadelphia, Pa: Mosby Elsevier;2005:chap 53.
Update Date: 3/18/2009
Updated by: Benjamin Taragin M.D., Department of Radiology, Montefiore Medical Center Bronx, N.Y. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
I just wanted to add this piece of information to the mix so that the problems are not all blamed on sinuses because an MRI shows inflammation.
Sending wishes for luck in defining the problem,
Ren
Hi and welcome,. You have some solid answers here, so I won't reepeat those. What I do want to ask about is the desire to avoid steroids.
Yes, they can have some nasty side effects, especially after prolonged usage, but they are very effective in giving relief to MS symptoms by reducing inflammation. they can cause weight gain, insomnia, bone thinning, etc. but most of that comes from prolonged usage. What they use for MS is often just a 3 day course. I hope you and your partner will reconsider the opposition to IV steroids and discuss the pros and cons with the doctors.
good luck,
Lulu
Yes, they can have some nasty side effects, especially after prolonged usage, but they are very effective in giving relief to MS symptoms by reducing inflammation. they can cause weight gain, insomnia, bone thinning, etc. but most of that comes from prolonged usage. What they use for MS is often just a 3 day course. I hope you and your partner will reconsider the opposition to IV steroids and discuss the pros and cons with the doctors.
good luck,
Lulu
But Lu, there's a big probability here that she has an entrenched infection, maybe several. Not a good time for steroids,
ess
ess
Until we know for sure what is causing this steroids are not an option. The other reason for us choosing not to use steroids was that the doctor who was prescribing it was not A) a neurologist or somebody experienced with MS and B) he was not her usual doctor and did not know her full history. If her neurologist had recommended the steroid treatment it would have been different. He has said to her in the past that you should only use steroids in extreme circumstances, for example.. if her optic neuritis affected both eyes, she could no longer walk. Although, right now things are extreme.. but it is because it has been going on for so long. The pain is gradually wearing her down.
Well, today I was out at work and when I arrived home she seemed in good spirits. We had a laugh about a few things that happened at work and one of her friends had left a gift for her on the doorstep with a card. Her friend lives in London and doesn't get much opportunity to see my partner, but with the way she is she doesn't feel up to seeing her. Maybe tomorrow.
Unfortunately, now she is back to being in extreme pain. Any slight sound or movement seems to trigger it off. It must be so, so hard to deal with. I feel helpless.
Well, today I was out at work and when I arrived home she seemed in good spirits. We had a laugh about a few things that happened at work and one of her friends had left a gift for her on the doorstep with a card. Her friend lives in London and doesn't get much opportunity to see my partner, but with the way she is she doesn't feel up to seeing her. Maybe tomorrow.
Unfortunately, now she is back to being in extreme pain. Any slight sound or movement seems to trigger it off. It must be so, so hard to deal with. I feel helpless.
Dear dannyboy,
Your partner is a very lucky person to have found someone so willing and understanding. Your empathize is to be applauded! I am so sorry your partner is feeling so poorly. Sending wishes for a quick recovery.
I also like the informed thinking you put into your decision making. Thanks for clearing up our speculations regarding the steroids!
Ren
Your partner is a very lucky person to have found someone so willing and understanding. Your empathize is to be applauded! I am so sorry your partner is feeling so poorly. Sending wishes for a quick recovery.
I also like the informed thinking you put into your decision making. Thanks for clearing up our speculations regarding the steroids!
Ren
It is tough when the patient is the one with medical knowledge. When I had my ankle surgery I was in the hospital longer than expected, but decided to go home (myself) because I didn't have my Avonex and it was past the time for it. Part of the reason I hadn't brought it was that it is supposed to be refrigerated, and who knows whether they would have taken care of it. They even lost another of my prescriptions.
I explained what Avonex is for, and that it is an interferon. Several people chirped up with, 'Oh, we have interferons. We can give you that.' I would have run screaming, if I had been able to run, or even walk. Lord save us. So I went home, where I understand my meds better than they do.
Danny, you were right to turn down steroids.
ess
I explained what Avonex is for, and that it is an interferon. Several people chirped up with, 'Oh, we have interferons. We can give you that.' I would have run screaming, if I had been able to run, or even walk. Lord save us. So I went home, where I understand my meds better than they do.
Danny, you were right to turn down steroids.
ess
that all makes sense to me......... especially that it wasn't her neuro recommending their use.
I hope the pain stops soon and her health makes an upward turn.
Lu
I hope the pain stops soon and her health makes an upward turn.
Lu
I don't blame you for turning down the steroids if it was not recommend by her regular neuro. I do know that my neuro wouldn't allow me to take steroids if she thought I had any kind of infection...so I am not understanding another that would allow it. It's too bad she can't take a round considering the pain she is in. It might be from inflammation and the steroids do help with it.
My first comment in a few days, have been busy at work and home so haven't had an opportunity to drop by. In preparation for tomorrow I have compiled a complete list of symptoms and other bits of information. She goes to see her MS Nurse and doctor tomorrow. For what it's worth I'll post it here for you guys to look at, maybe you have experienced similar things and could shed some light. Hope everyone is doing well.
ONGOING HEALTH ISSUES
~ Multiple Sclerosis
~ Endometriosis
~ Asthma
TIMELINE SINCE RECENT HEALTH ISSUES BEGAN
~ Lasik Surgery Sept 2010
~ Diagnosed with Optic Neuritis Oct 2010 (given Tramadol)
~ Diagnosed with eye infection Nov 2010 (given antibiotics (name?) eye drops)
~ Diagnosed with Shingles Dec 2010 (given Aciclovir)
THIS IS POINT WHEN CURRENT SYMPTOMS START
~ Diagnosed with Flu Jan 2011 (given Tamiflu)(had Flu jab Dec 2010)
~ Diagnosed with Sinusitis in Feb 2011 (given Eurithromycin)
~ Diagnosed with urinary infection March 2011 (given Trimethoprim)
CURRENT SYMPTOMS
~ Severe chronic headache (switching areas)
~ Severe chronic pain behind eyes (pain = burning)
~ Severe chronic facial pain (forehead, nose, cheeks, jawline) (pain = burning)
~ Severe chronic neck, shoulders, arms & back pain (pain = ache, sensitive to touch)
~ Severe chronic earache, drumbeat in ear (tinnitus?)
~ Severe chronic tooth pain
~ Pain/symptoms switch between left and right side of body rapidly
~ Weak muscles especially legs (MS related?)
~ Worse than normal pins and needles in hands (goes away when arms at side)
~ White discharge from eye (occasional)
~ Eyes feel dry
~ Difficulty focusing
~ Severe loss of appetite
~ Severe weight loss (1 ½ Stone in 2 months)
~ Nausea without vomiting
~ Constipated
~ Diarrhoea (liquid)
~ Dehydrated
~ Shallow breathing
~ Chest pain
~ Pain when breathing
~ Coughing up phlegm
~ Phlegm running down throat
~ Sore throat
~ Dry throat
~ Nose constantly runny/blocked
~ Difficulty swallowing
~ Hot & cold sweats
~ Extreme photophobia and blurry vision
~ Phonophobia
~ Dizziness, blacking out upon standing
~ Unusual fluid during recent peroid
~ Pain when passing urine
~ Difficulty passing urine (MS related?)
~ Constant tiredness
~ Mood swings
~ Severe depression
~ Anxious, nervous
~ Irritable
~ Nightmares
~ Memory loss
~ Dazed feeling
THINGS THAT AFFECT SYMPTOMS
~ Often worse in morning
~ Sleeping on particular side will affect opposite side following day
~ Stress/crying makes symptoms worse
~ Sitting up in bed eases symptoms
~ Breathing fresh air eases symptoms
~ Wind/cold air makes symptoms worse
~ Heat soothes symptoms
CURRENT TESTING
~ MRI scan (brain & spinal cord) - ordered by doctor at hospital (awaiting results)
CURRENT MEDICATION
~ Tramadol (x6 50mg a day)
~ Pregabalin (x2 25mg a day)
~ Trimethoprim (x2 200mg a day)(3 day course)
UPCOMING APPOINTMENTS
~ MS Nurse – Early March 2011
~ Ophthalmologist – Mid March 2011
~ Disease Modifying Clinic – Early April 2011
ONGOING HEALTH ISSUES
~ Multiple Sclerosis
~ Endometriosis
~ Asthma
TIMELINE SINCE RECENT HEALTH ISSUES BEGAN
~ Lasik Surgery Sept 2010
~ Diagnosed with Optic Neuritis Oct 2010 (given Tramadol)
~ Diagnosed with eye infection Nov 2010 (given antibiotics (name?) eye drops)
~ Diagnosed with Shingles Dec 2010 (given Aciclovir)
THIS IS POINT WHEN CURRENT SYMPTOMS START
~ Diagnosed with Flu Jan 2011 (given Tamiflu)(had Flu jab Dec 2010)
~ Diagnosed with Sinusitis in Feb 2011 (given Eurithromycin)
~ Diagnosed with urinary infection March 2011 (given Trimethoprim)
CURRENT SYMPTOMS
~ Severe chronic headache (switching areas)
~ Severe chronic pain behind eyes (pain = burning)
~ Severe chronic facial pain (forehead, nose, cheeks, jawline) (pain = burning)
~ Severe chronic neck, shoulders, arms & back pain (pain = ache, sensitive to touch)
~ Severe chronic earache, drumbeat in ear (tinnitus?)
~ Severe chronic tooth pain
~ Pain/symptoms switch between left and right side of body rapidly
~ Weak muscles especially legs (MS related?)
~ Worse than normal pins and needles in hands (goes away when arms at side)
~ White discharge from eye (occasional)
~ Eyes feel dry
~ Difficulty focusing
~ Severe loss of appetite
~ Severe weight loss (1 ½ Stone in 2 months)
~ Nausea without vomiting
~ Constipated
~ Diarrhoea (liquid)
~ Dehydrated
~ Shallow breathing
~ Chest pain
~ Pain when breathing
~ Coughing up phlegm
~ Phlegm running down throat
~ Sore throat
~ Dry throat
~ Nose constantly runny/blocked
~ Difficulty swallowing
~ Hot & cold sweats
~ Extreme photophobia and blurry vision
~ Phonophobia
~ Dizziness, blacking out upon standing
~ Unusual fluid during recent peroid
~ Pain when passing urine
~ Difficulty passing urine (MS related?)
~ Constant tiredness
~ Mood swings
~ Severe depression
~ Anxious, nervous
~ Irritable
~ Nightmares
~ Memory loss
~ Dazed feeling
THINGS THAT AFFECT SYMPTOMS
~ Often worse in morning
~ Sleeping on particular side will affect opposite side following day
~ Stress/crying makes symptoms worse
~ Sitting up in bed eases symptoms
~ Breathing fresh air eases symptoms
~ Wind/cold air makes symptoms worse
~ Heat soothes symptoms
CURRENT TESTING
~ MRI scan (brain & spinal cord) - ordered by doctor at hospital (awaiting results)
CURRENT MEDICATION
~ Tramadol (x6 50mg a day)
~ Pregabalin (x2 25mg a day)
~ Trimethoprim (x2 200mg a day)(3 day course)
UPCOMING APPOINTMENTS
~ MS Nurse – Early March 2011
~ Ophthalmologist – Mid March 2011
~ Disease Modifying Clinic – Early April 2011
Danny!
Excellent, excellent job with this timeline, Danny!
What I anticipate is that the doctor you are seeing will be able to attibute what you have on this list to those things he or she is versed in.
What you may find helpful at the onset of the appointment is to mention that you've completed this timeline so a doctor can scan through it and zero in on the "whole" picture of what is going wrong.
Also mention what you did here to us that most doctors attribute this always to her MS. And, stress what you said about this being dangerous practice because we all know there is no "fix" to MS. I do not believe by any means that all of this is her MS.
Look this doctor straight in the eye and ask "Are you willing to look at the whole picture and start an investigation on at least one of the biggest problems?" And, then name that problem. If doctor says it's out of his/her league - ask for a referral to someone who does this for patients.
You can also (before you go to appt.) help her to zero in on one of the largest problems (that leads to the smaller ones) so if this doc is willing to take on the investigation, you've got a game plan - kind of a priority list of sorts.
Wishing you both all the best of appointments tomorrow. Know we're pulling for you.
-Shell
Excellent, excellent job with this timeline, Danny!
What I anticipate is that the doctor you are seeing will be able to attibute what you have on this list to those things he or she is versed in.
What you may find helpful at the onset of the appointment is to mention that you've completed this timeline so a doctor can scan through it and zero in on the "whole" picture of what is going wrong.
Also mention what you did here to us that most doctors attribute this always to her MS. And, stress what you said about this being dangerous practice because we all know there is no "fix" to MS. I do not believe by any means that all of this is her MS.
Look this doctor straight in the eye and ask "Are you willing to look at the whole picture and start an investigation on at least one of the biggest problems?" And, then name that problem. If doctor says it's out of his/her league - ask for a referral to someone who does this for patients.
You can also (before you go to appt.) help her to zero in on one of the largest problems (that leads to the smaller ones) so if this doc is willing to take on the investigation, you've got a game plan - kind of a priority list of sorts.
Wishing you both all the best of appointments tomorrow. Know we're pulling for you.
-Shell
First of all, thanks for being such a caring partner.
I've read through everyone's posts, including yours. I was wondering if there has been any testing for neuro-sarcoidosis or has anyone suggested it?
I've read on avg it takes about 7 yrs to be diagnosed with it once the symptoms start. The reason why I thought of it is that it is one of the MS mimics. It carries a lot of the same symptoms as MS. However, the symptoms that you listed like facial issues, eye problems, sweats, sinus issues, loss of appetite & weight loss, psychological issues, muscle weakness on both sides, and issues with breathing all are symptoms that typically present with neuro-sarcoidosis.
I hope they can figure all of this out quickly for her.
Good luck to both of you.
-Kelly
I've read through everyone's posts, including yours. I was wondering if there has been any testing for neuro-sarcoidosis or has anyone suggested it?
I've read on avg it takes about 7 yrs to be diagnosed with it once the symptoms start. The reason why I thought of it is that it is one of the MS mimics. It carries a lot of the same symptoms as MS. However, the symptoms that you listed like facial issues, eye problems, sweats, sinus issues, loss of appetite & weight loss, psychological issues, muscle weakness on both sides, and issues with breathing all are symptoms that typically present with neuro-sarcoidosis.
I hope they can figure all of this out quickly for her.
Good luck to both of you.
-Kelly
The neurosarc is an excellent thought - good catch, Kelly.
how did the appointment go today? Give us an update when you can gather your thoughts.
Lu
how did the appointment go today? Give us an update when you can gather your thoughts.
Lu
Hi guys..
Well, first of all thank you all for your concern. I really appreciate it. She still has no report back from the MRI.. the doctor dealing with it has been off sick the past week so who knows when we'll find out. Secondly, her trip to the doctors yielded yet another theory on things.. Anxiety, psychosomatic disorder. She was given Prozac.
Perhaps there is some truth to it, I just don't know what to think any more and nor does she. She has certainly deteriorated psychologically over the last few months, but with everything going on who can blame her? It is yet again another example of a doctor unwilling to open his mind and instead just throw drugs (the fashoinable one seems to be anti-depressants) at the problem. Slowly but surely she's losing her faith in the medical service here.
I suppose, as Shell predicted, one thing he did do was investigate her eating/weight-loss/bowel issues. She has been referred to a Gastroenterologist. He also gave her some laxatives, which have worked quite well in getting her bowels moving again. I suppose he sees this as a particularly high level of threat to her health and it is something he can clearly see by examination.
He admitted that with all the symptoms, it just cannot be her MS.. at least not entirely. He also admitted that he simply didn't know what it could be, he said that it is extremely unlikely that all those symtoms could be caused by one single thing.
She has begun to reduce her Tramodol intake, which has made her bladder issues easier to deal with. But on the whole, nothing has really changed. She needs proper care, an open mind and a doctor qualified to deal with her. Sadly, we have yet to find this.
Well, first of all thank you all for your concern. I really appreciate it. She still has no report back from the MRI.. the doctor dealing with it has been off sick the past week so who knows when we'll find out. Secondly, her trip to the doctors yielded yet another theory on things.. Anxiety, psychosomatic disorder. She was given Prozac.
Perhaps there is some truth to it, I just don't know what to think any more and nor does she. She has certainly deteriorated psychologically over the last few months, but with everything going on who can blame her? It is yet again another example of a doctor unwilling to open his mind and instead just throw drugs (the fashoinable one seems to be anti-depressants) at the problem. Slowly but surely she's losing her faith in the medical service here.
I suppose, as Shell predicted, one thing he did do was investigate her eating/weight-loss/bowel issues. She has been referred to a Gastroenterologist. He also gave her some laxatives, which have worked quite well in getting her bowels moving again. I suppose he sees this as a particularly high level of threat to her health and it is something he can clearly see by examination.
He admitted that with all the symptoms, it just cannot be her MS.. at least not entirely. He also admitted that he simply didn't know what it could be, he said that it is extremely unlikely that all those symtoms could be caused by one single thing.
She has begun to reduce her Tramodol intake, which has made her bladder issues easier to deal with. But on the whole, nothing has really changed. She needs proper care, an open mind and a doctor qualified to deal with her. Sadly, we have yet to find this.
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