This promises to be a rambling post (and just keeps getting longer)… but hopefully you’ll make it through to the end…
So…I’ve been diagnosed since October 2010, with very minor symptoms, mostly sensory. Have been on Avonex since 11/11. Had ON as my first diagnostic clue; think I may have some minor bladder issues from time to time, maybe some swallowing issues and some minor cognitive issues.
At my last appt in November after having my 1 year MRI (no new lesions), I mentioned to my MS specialist that I have had some significant ringing in my ears (for quite some time); had also had some periods of dizziness in past years… but not recently. She referred me to an ENT physician to further check this out.
I saw the ENT doc, and then had an audiogram, (20 db difference between right and left at a particular frequency). The ENT office called to say that they wanted me to have an MRI to see if there is an acoustic neuroma on the right (a benign growth on the cranial nerve in the inner ear, often with symptoms similar to mine – dizziness and tinnitus, but usually one sided rather than both sides, which mine is). However, in reading on line, I found that MS can also mimic the symptoms of acoustic neuroma.
Since I just had a brain MRI, I am planning to have my MRI released to the ENT for review and hope that it is MS related, since treatment for AN would be either endoscopic surgery to remove the affected part of the nerve, or radiation treatment, neither of which guarantees relief.
Now the dilemma… my husband is a nurse, he has been marginally supportive of me during this whole diagnostic time… doesn’t seem to want to talk about it or hear my thoughts… BUT each time my physician suggests a further test to determine the cause of some problem I am having, he has said, “why go through all the diagnostic hoops to see what it is if they can’t do anything about it—what difference will it make if you don’t?”… he said the same thing about having urodynamics testing done to see if I have the start of a neurogenic bladder (which he says can’t be fixed; he used to work in Urology), as well as having a swallow study to see if that is a neuro problem. Since both the swallowing and bladder issues are very intermittent and not really problematic at this time, I haven ‘t done them… at this point.
My question to all of you is whether (and why) you do or don’t do testing and follow up of problems that may not be treatable or even have an answer, given the way MS is… My feeling is to try to find out what is going on and whether or not it can be fixed, or at least get a baseline for how I am now… just so that I can say to myself that this is caused by the MS (or not). His thought is apparently to ignore as much as possible and not run up medical bills (and he does this with his own health too!).
I have pretty decent insurance, but I know that this disease can be expensive… but just wonder from all of you, what your criteria is for deciding to have tests done and if any of you have had the same disagreements with family members. Sorry again for all the rambling on this topic… my thoughts are not as coherent as they used to be.
So…I’ve been diagnosed since October 2010, with very minor symptoms, mostly sensory. Have been on Avonex since 11/11. Had ON as my first diagnostic clue; think I may have some minor bladder issues from time to time, maybe some swallowing issues and some minor cognitive issues.
At my last appt in November after having my 1 year MRI (no new lesions), I mentioned to my MS specialist that I have had some significant ringing in my ears (for quite some time); had also had some periods of dizziness in past years… but not recently. She referred me to an ENT physician to further check this out.
I saw the ENT doc, and then had an audiogram, (20 db difference between right and left at a particular frequency). The ENT office called to say that they wanted me to have an MRI to see if there is an acoustic neuroma on the right (a benign growth on the cranial nerve in the inner ear, often with symptoms similar to mine – dizziness and tinnitus, but usually one sided rather than both sides, which mine is). However, in reading on line, I found that MS can also mimic the symptoms of acoustic neuroma.
Since I just had a brain MRI, I am planning to have my MRI released to the ENT for review and hope that it is MS related, since treatment for AN would be either endoscopic surgery to remove the affected part of the nerve, or radiation treatment, neither of which guarantees relief.
Now the dilemma… my husband is a nurse, he has been marginally supportive of me during this whole diagnostic time… doesn’t seem to want to talk about it or hear my thoughts… BUT each time my physician suggests a further test to determine the cause of some problem I am having, he has said, “why go through all the diagnostic hoops to see what it is if they can’t do anything about it—what difference will it make if you don’t?”… he said the same thing about having urodynamics testing done to see if I have the start of a neurogenic bladder (which he says can’t be fixed; he used to work in Urology), as well as having a swallow study to see if that is a neuro problem. Since both the swallowing and bladder issues are very intermittent and not really problematic at this time, I haven ‘t done them… at this point.
My question to all of you is whether (and why) you do or don’t do testing and follow up of problems that may not be treatable or even have an answer, given the way MS is… My feeling is to try to find out what is going on and whether or not it can be fixed, or at least get a baseline for how I am now… just so that I can say to myself that this is caused by the MS (or not). His thought is apparently to ignore as much as possible and not run up medical bills (and he does this with his own health too!).
I have pretty decent insurance, but I know that this disease can be expensive… but just wonder from all of you, what your criteria is for deciding to have tests done and if any of you have had the same disagreements with family members. Sorry again for all the rambling on this topic… my thoughts are not as coherent as they used to be.
), you should follow up with whatever your doctors recommend. 
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