Aa
New and unsure what to do next
I have been having some visual disturbances (first was double vision + blurrines, later were blurriness only). The double vision lasted a few minutes and the blurriness was still noticible the next day, but only when I looked with one eye only. The later disturbances are milder and seem to be triggered by heat, stress, or eye strain (scrunching my eye to use my camera triggered many of them, and now that it is warmer it happens whenever I use my camera). I did trigger one with a very hot bath and no camera. Also, at the end of the day it is not uncommon to just be blurry in one eye on hot days. I have also noticed that it seems dimmer in teh blurry eye and we did find that my color vision is slightly worse than the color vision in my right eye. All fairly mild and my vision is very good when this isn't happening. The neuro wasn't ready to diagnose at my last visit, but we hadn't figured out that it could be triggered by heat so he said over the phone that it looks like I have a mild optic neuropathy and we think the repeats are Uhthoff's symptom.
I have seen my neuroligist twice and when I took the visual evoked potential test, they found a delay in my left eye. The MRI of my brain that my PCP ordered was clean, but there were no cuts of my optic nerve. There were also a lot of blood tests and an echo, all of which were fine. I have another MRI and neuro visit in about 7 weeks. In the mean time my dad talked to a family friend who is a neuro and he offered to look at my medical record. He seemed to think more tests should be taken (MRI of spine and neck, and the antibody test for Neuromyelitis optica (I think)) and I think he thought that I should be on meds (just his first thoughts w/o seeing my record). I had my medical record sent to him at his request and I am probably talking to him this week.
I've done a lot of research online and, especially with the heat sensitivity, I'm worried that this is likely to be MS. I've read a lot but I'm still feeling rather lost and I don't really know what to do next. Any advice about what to do now and how to prepare for talking to my neurologist friend (across the country) and with my regular neuro?
I have seen my neuroligist twice and when I took the visual evoked potential test, they found a delay in my left eye. The MRI of my brain that my PCP ordered was clean, but there were no cuts of my optic nerve. There were also a lot of blood tests and an echo, all of which were fine. I have another MRI and neuro visit in about 7 weeks. In the mean time my dad talked to a family friend who is a neuro and he offered to look at my medical record. He seemed to think more tests should be taken (MRI of spine and neck, and the antibody test for Neuromyelitis optica (I think)) and I think he thought that I should be on meds (just his first thoughts w/o seeing my record). I had my medical record sent to him at his request and I am probably talking to him this week.
I've done a lot of research online and, especially with the heat sensitivity, I'm worried that this is likely to be MS. I've read a lot but I'm still feeling rather lost and I don't really know what to do next. Any advice about what to do now and how to prepare for talking to my neurologist friend (across the country) and with my regular neuro?
Patience is something that I will have to work on and it looks as though I will have a lot of opportunities to practice :) Thanks for your thoughts about the LP. I think I need to read up on it even more. I didn't see what I wanted in the health pages, but I'm sure it's out there somewhere.
opthamolagist - I have already seen a normal opthamolagist and my optic nerve looked fine. They also did a visual field test and had me did some color tests (worse color vision in affected eye, but not enough to make me fail the 15 color test). He thought maybe I was having vascular spasams in my eyes and the positive VEP was a fluke. The neuro didn't think much of that idea. I'm not sure what a neuro-opthamolalagist does differently but I want to get this figured out so I'm happy to go see one.
The MRI was ordered by my PCP and she was looking for a brain tumor which is why (I think) they didn't look at the optic nerve carefully. I'm also wondering if they would have taken smaller slices in general if they were looking for MS. They did use contrast but I don't think they are planning to for my MRI in August. I don't know the strength of the machine, but I plan to request my medical records and hopefully that will say. The notes to the person doing the MRI this coming august do mention MS so I'm hoping this MRI will be more helpful.
As for other symptoms: insomnia (wake up in the middle of the night and can't get back to sleep), mommy brain (bad bad memory and using the wrong word much much more than I used to), back pain, clumsiness, heat sensitivity, and fatigue.. but many of those could just be because I have two young children and don't sleep all that well. The memory thing freaks me out sometimes. At one of my son's doctors appts I was talking to the doc and thought that the PA hadn't come in yet... and they had and I had a conversation with them which I completely forgot. I truly thought the doc was the first person to come in.
I had/have some problems with my right foot but my neuro doesn't think it is MS related since it has mild swelling too (typically heat triggered). It feels funny and kind of full.. not quite numb, just weird. There is a spot on my toe with no feeling. I used to have a problem with shooting pain in that foot and went to a foot guy and it kind of seemed like tarsal tunnel but was so mild that we didn't do too much. He did MRIs of my foot and spine and I think he even did nerve testing of that leg, now that I think about it, and I was told all the results were normal although I don't have a copy of the records. I do have some shooting pain every now and again in that foot, but it isn't that bad so I just ignore it. I should probably request those records as well.
I need to talk to the neuro friend myself, but second hand (through my dad) I think he was talking about starting disease modifying drugs before MS diagnosis. I think. He also talked about steroids if appropriate.
Thanks for the warning about hot baths and showers. I have been avoiding hot baths, but I should probably cool down my showers a bit as well.
I'll get a copy of those records & thank you for all the advice and information!
Margaret
The MRI was ordered by my PCP and she was looking for a brain tumor which is why (I think) they didn't look at the optic nerve carefully. I'm also wondering if they would have taken smaller slices in general if they were looking for MS. They did use contrast but I don't think they are planning to for my MRI in August. I don't know the strength of the machine, but I plan to request my medical records and hopefully that will say. The notes to the person doing the MRI this coming august do mention MS so I'm hoping this MRI will be more helpful.
As for other symptoms: insomnia (wake up in the middle of the night and can't get back to sleep), mommy brain (bad bad memory and using the wrong word much much more than I used to), back pain, clumsiness, heat sensitivity, and fatigue.. but many of those could just be because I have two young children and don't sleep all that well. The memory thing freaks me out sometimes. At one of my son's doctors appts I was talking to the doc and thought that the PA hadn't come in yet... and they had and I had a conversation with them which I completely forgot. I truly thought the doc was the first person to come in.
I had/have some problems with my right foot but my neuro doesn't think it is MS related since it has mild swelling too (typically heat triggered). It feels funny and kind of full.. not quite numb, just weird. There is a spot on my toe with no feeling. I used to have a problem with shooting pain in that foot and went to a foot guy and it kind of seemed like tarsal tunnel but was so mild that we didn't do too much. He did MRIs of my foot and spine and I think he even did nerve testing of that leg, now that I think about it, and I was told all the results were normal although I don't have a copy of the records. I do have some shooting pain every now and again in that foot, but it isn't that bad so I just ignore it. I should probably request those records as well.
I need to talk to the neuro friend myself, but second hand (through my dad) I think he was talking about starting disease modifying drugs before MS diagnosis. I think. He also talked about steroids if appropriate.
Thanks for the warning about hot baths and showers. I have been avoiding hot baths, but I should probably cool down my showers a bit as well.
I'll get a copy of those records & thank you for all the advice and information!
Margaret
Hi, Welcome to the forum! I'm very glad you found us. Yes, you are describing Optic Neuritis with suggestive symptoms and a positive VEP (do you know what the delay was?) I agree that you should be seen by a neuro-ophthalmologist. Be aware that evidence of ON can be seen on only 50% or less of people with ON. It depends on where the site of damage is. If it is further back the optic disc will appear normal. So a normal exam does NOT rule out ON.
I also agree with your family friend. You do need an MRI of your cervical and thoracic spine.
Isolated ON (meaning no other sites of symptoms) itself, indicates that you have close to a 40% chance of developing MS within the next 8 years or so. Just over 30% of developing it in the next 2 to 3 years.
What kind of treatment was the family friend neuro considering? The typical symptomatic treatment for ON is high dose IV Steroids. This can quiet the symptoms, but has not been shown to affect the long term visual outcome - which BTS is usually good. Most ON heals. At this point they do not have enough info to declare you a Clinically Isolated Syndrome (CIS) I would think. That's why the spinal MRIs are so important.
Do you have any other symptoms? Fatigue? And I also agree that a lot of your transient symptoms are due to a true Uhthoff's Pnenomenon. Now, a word of warning. DO NOT TKE OT BATHS OR SHOWERS. Typically these just cause temporary worsening of symptoms, but rarely they can cause permanent worsening. It is not worth the luxury of the soak or shower.
Do you happen to know what the stength of the MRI you had was? And who ordered an MRI for suspected Optic Neuritis without specifying that the optic nerve be included? Bad miss, though, in my reading the VEP is more sensitive than the MRI in this circumstance. You clearly have been doing a lot of reading. This is great. As an informed patient you are much more likely to get better care, because you can ask the right questions.
Quix, MD
I also agree with your family friend. You do need an MRI of your cervical and thoracic spine.
Isolated ON (meaning no other sites of symptoms) itself, indicates that you have close to a 40% chance of developing MS within the next 8 years or so. Just over 30% of developing it in the next 2 to 3 years.
What kind of treatment was the family friend neuro considering? The typical symptomatic treatment for ON is high dose IV Steroids. This can quiet the symptoms, but has not been shown to affect the long term visual outcome - which BTS is usually good. Most ON heals. At this point they do not have enough info to declare you a Clinically Isolated Syndrome (CIS) I would think. That's why the spinal MRIs are so important.
Do you have any other symptoms? Fatigue? And I also agree that a lot of your transient symptoms are due to a true Uhthoff's Pnenomenon. Now, a word of warning. DO NOT TKE OT BATHS OR SHOWERS. Typically these just cause temporary worsening of symptoms, but rarely they can cause permanent worsening. It is not worth the luxury of the soak or shower.
Do you happen to know what the stength of the MRI you had was? And who ordered an MRI for suspected Optic Neuritis without specifying that the optic nerve be included? Bad miss, though, in my reading the VEP is more sensitive than the MRI in this circumstance. You clearly have been doing a lot of reading. This is great. As an informed patient you are much more likely to get better care, because you can ask the right questions.
Quix, MD
Hi there!
If nothing else, this process will teach you patience!
I think the decision to get an LP varies by doc, but from what I've experienced and read is that they usually do the MRI first. If that is a "slam dunk" either way (totally clear, or on the other end, with enough showing for a diagnosis), then you may be done, at least for the time. If the MRI is inconclusive, or if it is clear but you have a lot of unexaplined symptoms, then they are more likely to order the LP.
So, one step at a time. When you are discomforted by symptoms, it is hard to understand, but to the medical folks, a lot of these symptoms are non-urgent. One big exception that I can think of is your vision. If at any time you experience a dramatic change in vision, then it may be time to push for urgent care.
I'm glad that so far you are faring well with the doctor. It does help to understand the diagnostic process and some of the tests. I think if you read around some more, you'll get a good grasp on what the different testst show, but of course keep posting if you still have questions! I think a positive LP is a strong piece of diagnostic evidence. I'm not sure about if it can be too soon to check the spinal fluid, maybe that is burried in the health pages?
Good luck and take care!
If nothing else, this process will teach you patience!
I think the decision to get an LP varies by doc, but from what I've experienced and read is that they usually do the MRI first. If that is a "slam dunk" either way (totally clear, or on the other end, with enough showing for a diagnosis), then you may be done, at least for the time. If the MRI is inconclusive, or if it is clear but you have a lot of unexaplined symptoms, then they are more likely to order the LP.
So, one step at a time. When you are discomforted by symptoms, it is hard to understand, but to the medical folks, a lot of these symptoms are non-urgent. One big exception that I can think of is your vision. If at any time you experience a dramatic change in vision, then it may be time to push for urgent care.
I'm glad that so far you are faring well with the doctor. It does help to understand the diagnostic process and some of the tests. I think if you read around some more, you'll get a good grasp on what the different testst show, but of course keep posting if you still have questions! I think a positive LP is a strong piece of diagnostic evidence. I'm not sure about if it can be too soon to check the spinal fluid, maybe that is burried in the health pages?
Good luck and take care!
Rena - thank you for your reply and the warm welcome! I checked out the health page that you recommended and it was very helpful. I was worried that I didn't have an MS specialist, but I looked up my neuro and found that he is associated with the group Quix recommends. I also called to find out about what was ordered for the MRI and to find out more about the machines (getting it done in a mobile unit and I wanted to make sure the machines were the same as the ones in the hospital)... so it seems that I am in pretty good hands.
The elk picture was taken out of my living room window - there were 13 of them, I think, but the male was especially impressive. They are really pretty although they are hard on the grass. We live near a stream and heavy animals + squishy dirt = 6-8 inch deep hoofprints all over the place.
I ended up calling my neurologist yesterday as I hadn't told him about the end of the day vision problems since they were new (hasn't been warm here for long and yesterday I had a hard time). It seems I was wrong about the definite diagnosis. It sounds as if he's about 98% sure. He suggested that he send me to a neuroopthamolagist and I think the idea is that we will more definitely decide that it is ON or the neurologist will have other ideas about what it is. I am supposed to call them at the end of the week to make an appt.
I asked him about the LP (which the neuro friend suggested as well, but I forgot about) and my neuro said that since it wouldn't, at this point, give me a diagnosis of MS he didn't think we should do it yet. I guess I need to find out more... would we expect it to be negative this early on? If it is positive does it tell us that it MS is more likely and we should look more closely at other symptoms? Or does it just say nothing. I'm guessing I should check out the health pages :)
The elk picture was taken out of my living room window - there were 13 of them, I think, but the male was especially impressive. They are really pretty although they are hard on the grass. We live near a stream and heavy animals + squishy dirt = 6-8 inch deep hoofprints all over the place.
I ended up calling my neurologist yesterday as I hadn't told him about the end of the day vision problems since they were new (hasn't been warm here for long and yesterday I had a hard time). It seems I was wrong about the definite diagnosis. It sounds as if he's about 98% sure. He suggested that he send me to a neuroopthamolagist and I think the idea is that we will more definitely decide that it is ON or the neurologist will have other ideas about what it is. I am supposed to call them at the end of the week to make an appt.
I asked him about the LP (which the neuro friend suggested as well, but I forgot about) and my neuro said that since it wouldn't, at this point, give me a diagnosis of MS he didn't think we should do it yet. I guess I need to find out more... would we expect it to be negative this early on? If it is positive does it tell us that it MS is more likely and we should look more closely at other symptoms? Or does it just say nothing. I'm guessing I should check out the health pages :)
Hello and Welcome to the MS Forum! I want to start by saying that is an impressive looking elk in your picture...not many I have seen with a rack like that!
Anyway, back to business! So sorry to hear that you have been suffering from ON...not a pleasant side effect that's for sure! Personally I am going to say that because you have a definitive diagnosis of ON and ON is generally one of the first symptoms of MS, I would advise you to ask for further testing from your Neurologist. Just because your MRI doesn't show any lesions doesn't necessarily mean that they are not there! They may be too small to see or in an area that may have been missed.
I notice that you have not had a Lumbar Puncture. I would say that this would be the next step for you in the search for a diagnosis. What I would suggest is that you look at the Health Pages up in the right hand corner and there is a subject that is called something like..."my family doctor thinks I may have MS...what do I do now?" (or something like that...I wrote it but can never remember what I called it tee hee). This will give you an overview of what the proper steps would be in the search for a diagnosis for your symptoms. There is a whole lot of other information in the Health Pages as well that are invaluable to anyone that is facing a possible MS diagnosis. The best thing you can arm yourself with right now is education so that you will have ammunition to work with as you travel on this sometimes scary journey.
Please know that we are here for you 24/7 and although none of us are physicians and we are unable to diagnose anything we can help to point you in the right direction to find some answers. So if you need to rant, rave, laugh or cry we are here and will help you in any manner that we can ok? Please know as well that the experiences you share may be beneficial to someone else on the forum so it would be nice if you would stay with us and share your story in the hopes that you can help someone else which is also very therapeutic.
Lots of Hugs,
Rena
Anyway, back to business! So sorry to hear that you have been suffering from ON...not a pleasant side effect that's for sure! Personally I am going to say that because you have a definitive diagnosis of ON and ON is generally one of the first symptoms of MS, I would advise you to ask for further testing from your Neurologist. Just because your MRI doesn't show any lesions doesn't necessarily mean that they are not there! They may be too small to see or in an area that may have been missed.
I notice that you have not had a Lumbar Puncture. I would say that this would be the next step for you in the search for a diagnosis. What I would suggest is that you look at the Health Pages up in the right hand corner and there is a subject that is called something like..."my family doctor thinks I may have MS...what do I do now?" (or something like that...I wrote it but can never remember what I called it tee hee). This will give you an overview of what the proper steps would be in the search for a diagnosis for your symptoms. There is a whole lot of other information in the Health Pages as well that are invaluable to anyone that is facing a possible MS diagnosis. The best thing you can arm yourself with right now is education so that you will have ammunition to work with as you travel on this sometimes scary journey.
Please know that we are here for you 24/7 and although none of us are physicians and we are unable to diagnose anything we can help to point you in the right direction to find some answers. So if you need to rant, rave, laugh or cry we are here and will help you in any manner that we can ok? Please know as well that the experiences you share may be beneficial to someone else on the forum so it would be nice if you would stay with us and share your story in the hopes that you can help someone else which is also very therapeutic.
Lots of Hugs,
Rena
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