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Frustrated and Undiagnosed!
Hi, everyone. A colleague of mine suggested this forum to get opinions and advice, so I hope you don't mind getting question from someone who is not officially diagnosed (or may not even have MS!). This is long so bear with me.
I'm 32/f and have had 3 mysterious illnesses which I will call "attacks" that have come and gone (except the current one: it is still going on even though it is gradually improving), in addition to odd random things MS-type symptoms happening every once in a while for the past 18 years.
I just recently I realized I might have Multiple Sclerosis. The first attack happened 18 years ago, when I was 14, when I lost part of my vision in one eye and had flashes of light, eye pain, and ringing ears. I was rushed to the ER, had a Brain MRI and spinal tap done, and it was confirmed that my optic nerve was inflamed and there is nothing they can do about it and they don't know why it happened. They suspected MS at first but the doctor said since the MRI is clear and the spinal tap showed nothing, then it's not MS. This attack lasted several months, and finally went away.
Four years later when I was 18 I had the same thing happen only this time the blind spot was not as big and it was, and it was also accompanied by extreme fatigue. The MRI showed nothing this time, and was told by a really rude doctor that I was "making it up to get out of school" and that I was "wasting his time". This one lasted only a month, and then went away completely.
The third and current attack started last month. It's the same problem with the one eye, but also there is dizziness, numbness and tingling happening in various parts of my body, incontinence (which has happened a few times in the past for no reason), speech and concentration problems, feeling really "out of it" and extreme fatigue. The MRI showed nothing wrong with the brain and doctor refuses to figure out what's going on.
I recently spoke to a colleague of mine whose brother has MS and he explained to me that what I experienced with the "inflamed optic nerve" 18 years ago was likely Optic Neuritis and suggested I go see a neurologist. He told me to bring all my MRI CDs to the appointment. I have the MRI that was done last week with me, but I don't have the other 2. I called the primary doctor who treated me 18 years ago and apparently he purged my file 5 years after the incident happened! So I called the neurologist who treated me back then, and apparently he retired and the doctor who took over has no record of me ever being a patient of that neurologist! So I called the hospital where I got the MRI done, and they said they purge files after 10 years and there is no record of me ever being there. There is absolutely NO record of this MRI, or the other MRI! My mom never got a copy because she figured the doctors and the hospitals had it on file.
What should I do? Having MS would explain a lot. Even if I don't have MS, I want to know what I have and I want answers. I have no proof of the other 2 attacks, which is unfortunate and very frustrating. And I'm also sick of doctors implying I am making this all up.
Advice, suggestions, similar stories are welcome.
I'm 32/f and have had 3 mysterious illnesses which I will call "attacks" that have come and gone (except the current one: it is still going on even though it is gradually improving), in addition to odd random things MS-type symptoms happening every once in a while for the past 18 years.
I just recently I realized I might have Multiple Sclerosis. The first attack happened 18 years ago, when I was 14, when I lost part of my vision in one eye and had flashes of light, eye pain, and ringing ears. I was rushed to the ER, had a Brain MRI and spinal tap done, and it was confirmed that my optic nerve was inflamed and there is nothing they can do about it and they don't know why it happened. They suspected MS at first but the doctor said since the MRI is clear and the spinal tap showed nothing, then it's not MS. This attack lasted several months, and finally went away.
Four years later when I was 18 I had the same thing happen only this time the blind spot was not as big and it was, and it was also accompanied by extreme fatigue. The MRI showed nothing this time, and was told by a really rude doctor that I was "making it up to get out of school" and that I was "wasting his time". This one lasted only a month, and then went away completely.
The third and current attack started last month. It's the same problem with the one eye, but also there is dizziness, numbness and tingling happening in various parts of my body, incontinence (which has happened a few times in the past for no reason), speech and concentration problems, feeling really "out of it" and extreme fatigue. The MRI showed nothing wrong with the brain and doctor refuses to figure out what's going on.
I recently spoke to a colleague of mine whose brother has MS and he explained to me that what I experienced with the "inflamed optic nerve" 18 years ago was likely Optic Neuritis and suggested I go see a neurologist. He told me to bring all my MRI CDs to the appointment. I have the MRI that was done last week with me, but I don't have the other 2. I called the primary doctor who treated me 18 years ago and apparently he purged my file 5 years after the incident happened! So I called the neurologist who treated me back then, and apparently he retired and the doctor who took over has no record of me ever being a patient of that neurologist! So I called the hospital where I got the MRI done, and they said they purge files after 10 years and there is no record of me ever being there. There is absolutely NO record of this MRI, or the other MRI! My mom never got a copy because she figured the doctors and the hospitals had it on file.
What should I do? Having MS would explain a lot. Even if I don't have MS, I want to know what I have and I want answers. I have no proof of the other 2 attacks, which is unfortunate and very frustrating. And I'm also sick of doctors implying I am making this all up.
Advice, suggestions, similar stories are welcome.
Your screen name sounds like something they say in AA. JK I wanted the name but it was taken. I would rather need AA than the stuff we are dealing with. There is no reprieve.
If you are diagnosed with MS, what type of medication or treatment do they put you on?
What do they do for the pain? I can't be on pain pills for a long time but for me pain has been daily for 2+ years.
I'm kinda curious. What other MS type symptoms did you have that you mentioned in the first paragraph?
Hope you feel better soon!!
If you are diagnosed with MS, what type of medication or treatment do they put you on?
What do they do for the pain? I can't be on pain pills for a long time but for me pain has been daily for 2+ years.
I'm kinda curious. What other MS type symptoms did you have that you mentioned in the first paragraph?
Hope you feel better soon!!
Hi and welcome to the forum...thre are many people on the forum who are in limboland and trying to make sense of their neurological symptoms and searching for a diagnosis.
As I think others have suggested, look at the health pages and when you visit a neurologist take a concise timeline of all the "attacks" you have had with clear examples of all the symptoms you have experienced. I hope that you can find someone who listens to you and a good neurologist should take note of your clinical history as this makes up part of the diagnostic process, as well as testing and eliminating other conditions.
Let us know how you get on and you are very welcome - it is a great forum with some very experienced folks who can asnwer the more technical questions, as well as some of the kindest, friendliest people who give up their time to reach out and support others.
Welcome!
Best wishes
Sarah :)
As I think others have suggested, look at the health pages and when you visit a neurologist take a concise timeline of all the "attacks" you have had with clear examples of all the symptoms you have experienced. I hope that you can find someone who listens to you and a good neurologist should take note of your clinical history as this makes up part of the diagnostic process, as well as testing and eliminating other conditions.
Let us know how you get on and you are very welcome - it is a great forum with some very experienced folks who can asnwer the more technical questions, as well as some of the kindest, friendliest people who give up their time to reach out and support others.
Welcome!
Best wishes
Sarah :)
Welcome to the forum!
Well, you've certainly got some symptoms which sound neurological. Is the doctor you mention a neurologist? Or was he just some doctor from the hospital?
First things first - don't worry about the old MRIs. Since they didn't show anything, they won't do you much good now. Second thing - what strength was the MRI done on? That's one of my pet peeves, as many doctors will schedule you for an MRI that's too weak to catch MS disease activity. 1.5 Tesla is okay, but 3T is better.
A neurologist will be able to track your symptoms and whether they change, and will be able to figure out what's going on with you. It's unlikely that he will think you're making it up. And if he does suggest that - run away quickly!
If they find nothing wrong after the gamut of tests they'll put you through, then they might suggest a neuro-psych exam. That sounds scary and it sounds like they're saying you're crazy, but actually it's a great idea. It will eliminate the possibility of you being 'crazy' or having some sort of conversion disorder. It will also help pinpoint cognitive problems that you're experiencing.
You deserve to be treated for your symptoms, even if the doctor can't figure out what's going on. Remember that - and hang in there. It might take a while for a diagnosis.
Well, you've certainly got some symptoms which sound neurological. Is the doctor you mention a neurologist? Or was he just some doctor from the hospital?
First things first - don't worry about the old MRIs. Since they didn't show anything, they won't do you much good now. Second thing - what strength was the MRI done on? That's one of my pet peeves, as many doctors will schedule you for an MRI that's too weak to catch MS disease activity. 1.5 Tesla is okay, but 3T is better.
A neurologist will be able to track your symptoms and whether they change, and will be able to figure out what's going on with you. It's unlikely that he will think you're making it up. And if he does suggest that - run away quickly!
If they find nothing wrong after the gamut of tests they'll put you through, then they might suggest a neuro-psych exam. That sounds scary and it sounds like they're saying you're crazy, but actually it's a great idea. It will eliminate the possibility of you being 'crazy' or having some sort of conversion disorder. It will also help pinpoint cognitive problems that you're experiencing.
You deserve to be treated for your symptoms, even if the doctor can't figure out what's going on. Remember that - and hang in there. It might take a while for a diagnosis.
Yikes!! Did you or your parents keep ANY of your medical records? Parts of your story have similarities to my story (first "attack" about 18 yrs ago, MRI's showing clear, second "attack" about 7-8 yrs later, then most recent 10 yrs after second attack). All my brain MRI's showing clear.
My old neurologists gave me copies of my MRI's so I had them to give my neuro after my last attack. Since none of them showed any abnormality though and my leisions weren't in my brain, but in my spine, they really didn't help. Of course better to have than not to have but you can get dx w/o prior records.
ON is a common first sx of MS but there are a lot of other things that dr's have to rule out before they jump to MS. Not sure why your dr would think you are making this up or not willing to help you but there are others here that have had bad dr stories.
Would you consider going to another dr? Many yrs ago, when I was in my 20's I interviewed several drs for a surgical procedure. I found none of them on my medical plan adequate for what I needed. I was able to prove to my insurance company that I needed someone outside the plan to help me. They approved and all turned out well. My point is, you have to be your own best advocate. Don't give up! Find someone who will listen and help you.
Julie
My old neurologists gave me copies of my MRI's so I had them to give my neuro after my last attack. Since none of them showed any abnormality though and my leisions weren't in my brain, but in my spine, they really didn't help. Of course better to have than not to have but you can get dx w/o prior records.
ON is a common first sx of MS but there are a lot of other things that dr's have to rule out before they jump to MS. Not sure why your dr would think you are making this up or not willing to help you but there are others here that have had bad dr stories.
Would you consider going to another dr? Many yrs ago, when I was in my 20's I interviewed several drs for a surgical procedure. I found none of them on my medical plan adequate for what I needed. I was able to prove to my insurance company that I needed someone outside the plan to help me. They approved and all turned out well. My point is, you have to be your own best advocate. Don't give up! Find someone who will listen and help you.
Julie
Hello and welcome. We have many people with no diagnosis yet. I have a similar experience of seeing Neurologists as a child and no proof. What is important is the details you have provided. May be you should try to be referred to a MS Specialist. Neurologists Specialize and not all Neurologists are good at diagnosing MS. It is a tough diagnosis one of excluding other possibilities. It can take awhile to sort out. I had to go to several different Neurologists.
You can click on the health pages at the top right. There is a wealth of information on the diagnosis process.
Hang in there.
Alex
You can click on the health pages at the top right. There is a wealth of information on the diagnosis process.
Hang in there.
Alex
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