Aa
Should I push for a 2nd opinion?
Hello all. New to this board --- found it in a Google search & am hopeful I will be able to gain some reassurance here! I am going to start by giving you a timeline of my "symptoms" & then follow up with a few questions, I hope this is ok!
2004 --- at At age 23 I started wetting the bed. Full emptying of bladder that does not wake me up. This lasted for about a year & then disappeared. About 6 months ago, at age 32, it returned. I continue to wet the bed each night. It never wakes me up. I do not drink or do drugs.
June 2009 -- tingling in my right toes. A solid numbness that stayed present for several months before disappearing. It has since reappeared and disappeared several times, each occurrence lasting from a week or two to several months. It has spread to my other foot now as well and affects all of my toes and part of my foot.
September of 2009 --- I started getting what I believed to be migraines. I would get a couple a month. Since then they have increased in frequency. Now I get them almost daily & they are completely debilitating. I wake up the following day with a hangover from them. I have been in the ER with them twice. Once last July --- they did an MRI that showed two small (.5mm) White Matter Lesions in my frontal lobe. The ER doctor told me to follow up with a neuro/MS specialist.
It has taken this long for them to work me in. (6 months) My original appointment was with a MS specialist was mixed up in their system and I ended up seeing a Family Nurse Practitioner who works in neurology. She seemed very knowledgeable but was quick to dismiss the idea of MS. Obviously this is what I want t be true. But I have some concerns. Bear with me.
Here is the rest of my list of symptoms:
-decreased sex drive (a very active one to one that is basically non existent now)
- these spells that i describe as "whooooooooosh" spells. My brain feels cold and tingly, my vision tunnels, and my hearing becomes muffled for about a minute at a time. These occur a few times a week, separate from the headaches.
- extreme fatigue regardless of attempts to control with diet and exercise.
- extreme lightheadedness
- extreme forgetfullness/inability to concentrate
-the feeling of being stung by a jellyfish on the outsides of my thighs.
These things, along with the bed wetting, headaches, and foot numbness that I mentioned above, have all become more frequent in the past 6 months to a year.
The FNP I saw today was quick to dismiss the ER's thought of MS. She has ordered a spinal MRI and an EEG for next Monday. I am feeling anxious. Do you think I should still be concerned about MS (and seek a 2nd opinion elsewhere) or do you think this FNP is right and I should just wait and see?
2004 --- at At age 23 I started wetting the bed. Full emptying of bladder that does not wake me up. This lasted for about a year & then disappeared. About 6 months ago, at age 32, it returned. I continue to wet the bed each night. It never wakes me up. I do not drink or do drugs.
June 2009 -- tingling in my right toes. A solid numbness that stayed present for several months before disappearing. It has since reappeared and disappeared several times, each occurrence lasting from a week or two to several months. It has spread to my other foot now as well and affects all of my toes and part of my foot.
September of 2009 --- I started getting what I believed to be migraines. I would get a couple a month. Since then they have increased in frequency. Now I get them almost daily & they are completely debilitating. I wake up the following day with a hangover from them. I have been in the ER with them twice. Once last July --- they did an MRI that showed two small (.5mm) White Matter Lesions in my frontal lobe. The ER doctor told me to follow up with a neuro/MS specialist.
It has taken this long for them to work me in. (6 months) My original appointment was with a MS specialist was mixed up in their system and I ended up seeing a Family Nurse Practitioner who works in neurology. She seemed very knowledgeable but was quick to dismiss the idea of MS. Obviously this is what I want t be true. But I have some concerns. Bear with me.
Here is the rest of my list of symptoms:
-decreased sex drive (a very active one to one that is basically non existent now)
- these spells that i describe as "whooooooooosh" spells. My brain feels cold and tingly, my vision tunnels, and my hearing becomes muffled for about a minute at a time. These occur a few times a week, separate from the headaches.
- extreme fatigue regardless of attempts to control with diet and exercise.
- extreme lightheadedness
- extreme forgetfullness/inability to concentrate
-the feeling of being stung by a jellyfish on the outsides of my thighs.
These things, along with the bed wetting, headaches, and foot numbness that I mentioned above, have all become more frequent in the past 6 months to a year.
The FNP I saw today was quick to dismiss the ER's thought of MS. She has ordered a spinal MRI and an EEG for next Monday. I am feeling anxious. Do you think I should still be concerned about MS (and seek a 2nd opinion elsewhere) or do you think this FNP is right and I should just wait and see?
Hi and welcome!
At this point there is always a lot of testing to be done and I agree with Kyle that a neuro visit as the ER doc said is a definite step in knowing what to look for, even if it is not MS.
You have done a great job of doing a timeline of your symptoms and I would be sure to take that list with you to a neurologist.
When my symptoms started 16 months ago, it took months for MS to even be a possibility and when it was I was terrified. Because I enjoy research I did a lot of it and became less anxious about it.
When my MS diagnosis came I felt relieved in a way because I knew what I was dealing with and it is scary in a big way, but once you understand it and learn to live with it life is not horrible or coming to an end.
Now that I have babbled on a bit, I have to also say that you shouldn't assume it is MS because there are a lot of mimics out there. More testing is in your future for sure and it may or may not take time to get this figured out but you are searching for answers in the right places and seeing the right people.
Hang in there!
Corrie
At this point there is always a lot of testing to be done and I agree with Kyle that a neuro visit as the ER doc said is a definite step in knowing what to look for, even if it is not MS.
You have done a great job of doing a timeline of your symptoms and I would be sure to take that list with you to a neurologist.
When my symptoms started 16 months ago, it took months for MS to even be a possibility and when it was I was terrified. Because I enjoy research I did a lot of it and became less anxious about it.
When my MS diagnosis came I felt relieved in a way because I knew what I was dealing with and it is scary in a big way, but once you understand it and learn to live with it life is not horrible or coming to an end.
Now that I have babbled on a bit, I have to also say that you shouldn't assume it is MS because there are a lot of mimics out there. More testing is in your future for sure and it may or may not take time to get this figured out but you are searching for answers in the right places and seeing the right people.
Hang in there!
Corrie
Hit send too soon :-)
..,MS "tells" to borrow a poker term.
MS is not the end of the world. There are lots of us with MS that are able to hide in plain sight :-)
Kyle
..,MS "tells" to borrow a poker term.
MS is not the end of the world. There are lots of us with MS that are able to hide in plain sight :-)
Kyle
Hi Nico -
Some of what you describe is on the MS Usual Symptoms list, like the fatigue, urinary incontinence, strange topical sensations.
The Whoosh thing sounds more blood pressure/ circulation related. I have orthostatic hypotension, a fancy way of saying that sometimes when I stand up my blood pressure drops. What you describe is similar to what I experience when this happens.
The ER doc was not wrong. You have lesions in your brain and MS like symptoms. These need to be taken seriously. The ER doc was also wise to suggest you see an MS specialist. MS is first and foremost a clinical diagnosis. This means it is based on a neurological physical exam, conducted by a neuro who specializes in spotting MS
Some of what you describe is on the MS Usual Symptoms list, like the fatigue, urinary incontinence, strange topical sensations.
The Whoosh thing sounds more blood pressure/ circulation related. I have orthostatic hypotension, a fancy way of saying that sometimes when I stand up my blood pressure drops. What you describe is similar to what I experience when this happens.
The ER doc was not wrong. You have lesions in your brain and MS like symptoms. These need to be taken seriously. The ER doc was also wise to suggest you see an MS specialist. MS is first and foremost a clinical diagnosis. This means it is based on a neurological physical exam, conducted by a neuro who specializes in spotting MS
Kyle, thank you for your reply. I feel very lost. I am wondering if when the ER doctor told me MS was a possibility, if I honed in on that & am worried for no reason. After reading through my "symptoms" do you think I have cause to go forward in getting screened for MS? I know its a long process --- do you think I am wasting my & everyone else's time? I just have NO idea what to think about all this?
Hi Nico - welcome to the group.
MS is a difficult diagnosis, even for trained neurologists. I would not rely on the word of a nurse practioner. I have nothing against NPs. In fact I rely heavily on the NP at my MS practice. She does not do any diagnosing.
That she has ordered an MRI of your spine, hopefully cervical and thoracic, is a good thing. You should ask for a copy of the radiology report and a CD with the images. See if you can get the same from the ER for your brain study. (It's a good idea to get copies of all test results and build a file. This way if you need to see additional docs you will have the data.)
You should see either the MS specialist associated with the NO's practice and or another MS specialist.
Just one man's opinion :-)
Kyle
MS is a difficult diagnosis, even for trained neurologists. I would not rely on the word of a nurse practioner. I have nothing against NPs. In fact I rely heavily on the NP at my MS practice. She does not do any diagnosing.
That she has ordered an MRI of your spine, hopefully cervical and thoracic, is a good thing. You should ask for a copy of the radiology report and a CD with the images. See if you can get the same from the ER for your brain study. (It's a good idea to get copies of all test results and build a file. This way if you need to see additional docs you will have the data.)
You should see either the MS specialist associated with the NO's practice and or another MS specialist.
Just one man's opinion :-)
Kyle
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