I have not yet gone to my neurologist appointment or had a spinal tap, but I was told today that I now have 7 lesions on my brain. In 2004 I went completely blind due to optic neuritis. My vision was fully restored after intravenous steroid treatments. I went to the best opthal-neurologist in MI. He said at the time I had 3 lesions, not enough to claim MS. It was hell and since then I have been through frustrating sequences of lab work, testing, and symptoms galore!
I guess in my mind I always knew that I had a huge chance of ending up with MS, especially with the optic neuritis and some of my reoccuring symptoms, but now what?
I'm interested in symptoms everyone has on here. Over the last 5 and a half years I have had the following.....
1. Severe back pain
2. Horrid headaches
3. Bouts of vertigo and dizziness
4. RLS, severely
5. Parasthesia....every night and morning my arms are tingling, and my hands are completely asleep
6. Unexplained nausea
7. Moments of lost thought processing
8. Irritating ticks and spasms
9. Semantic memory loss
and a few others that I never bothered to pay much attention to.
What are all of your oppinions? And what are some of the things and methods you all use to deal with it day to day? I do trust my primary's oppinion and she says she is not the specialist of course, and told me to go and research for myself and see the neurologist and perhaps an MS specialist as well. I just want some insight from those that experience it themselves.
I've never known anyone with MS, and I understand that the disease effects everyone differently. I am just relieved that I have something to explain all of my ailments and constant fatigue and irritability due to pain!
Jen. First of all, if I had a primary doctor who told me to go and research for myself I would run for the hills and never look back! Secondly, you havent seen the neurologist or had a LP (which means nothing) but you were told you have 7 lesions on your brain? BY WHO? Your Primary told you that? Based on what? If someone based an opinion like that on anything but being able to see the lesions, point them out and explain them to me- Id be scared.
Think maybe you need to redirect your efforts to find out what is wrong with you and go straight to either a good Neuro, one who deals with a good number of MS patients, or straight to the MS Specialist...but unless your GP is moonlighting as a radiologist or a nuerologist, this just doesnt sound right.
As for your symtoms. First of all, even if you have 7 lesions, thats not allot. I have over 50; however if your symtoms align with the lesions- it is enough to get you a MS dx. However, its also enough to say its "demylinating disease", Lymes disease or even Lupus, depending on exactly where they are, and if they are - or arent MS formed lesions. Lesions can even show up from migranes....were you aware of that? Also, having had ON- that also leaves scars on the optic nerve, was she counting them as well?
An LP or spinal tap will tell you nothing. Except if you have menigitis, or any other brain infection such as PML. It cannot tell you if you have MS. IT can tell you if you have OBands, which mean that there is an autoimmune disease present....but that can be anything. THere is no specific test for MS as you probably know, its based on ruling everything else out.
So, about your list of symtoms. Do you have them all at once? or do they come and go? Have any of them lasted any long amount of time? Have any of them gotten better? have you figured out what your triggers are, which make them worse? To be honest with you, yes, they could all be neurological symtoms, but they could also be Lymes disease or any other auto-immune.
I wish you well, but I honestly think you need specialist at this point. Your GP just isnt qualified to manage the symtoms you told us about, nor is she capable of reading an MRI.
And you were right- MS does present differntly in everyone. THe first thing you should consider, if you do have the disease, is deciding if you want to get on a diseae modifying drug (shots) which will prevent new symtoms and reduce the relapses you might have. I had ON 3 times, started on Rebif and havent had a relaspse in almost 5 years.
It is good to see that you can finally get a diagnosis. I have not had unexplained nausea or RLS. My mom has RLS and Parkinson's. One thing the doctor will likely ask is the duration of your symptoms. I posted a symptom list a while ago on this site. You should know that symptoms can vary from MSer to MSer. Also symptoms can be indicative of a myriad of maladies.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Jen. First of all, if I had a primary doctor who told me to go and research for myself I would run for the hills and never look back! Secondly, you havent seen the neurologist or had a LP (which means nothing) but you were told you have 7 lesions on your brain? BY WHO? Your Primary told you that? Based on what? If someone based an opinion like that on anything but being able to see the lesions, point them out and explain them to me- Id be scared.
Think maybe you need to redirect your efforts to find out what is wrong with you and go straight to either a good Neuro, one who deals with a good number of MS patients, or straight to the MS Specialist...but unless your GP is moonlighting as a radiologist or a nuerologist, this just doesnt sound right.
As for your symtoms. First of all, even if you have 7 lesions, thats not allot. I have over 50; however if your symtoms align with the lesions- it is enough to get you a MS dx. However, its also enough to say its "demylinating disease", Lymes disease or even Lupus, depending on exactly where they are, and if they are - or arent MS formed lesions. Lesions can even show up from migranes....were you aware of that? Also, having had ON- that also leaves scars on the optic nerve, was she counting them as well?
An LP or spinal tap will tell you nothing. Except if you have menigitis, or any other brain infection such as PML. It cannot tell you if you have MS. IT can tell you if you have OBands, which mean that there is an autoimmune disease present....but that can be anything. THere is no specific test for MS as you probably know, its based on ruling everything else out.
So, about your list of symtoms. Do you have them all at once? or do they come and go? Have any of them lasted any long amount of time? Have any of them gotten better? have you figured out what your triggers are, which make them worse? To be honest with you, yes, they could all be neurological symtoms, but they could also be Lymes disease or any other auto-immune.
I wish you well, but I honestly think you need specialist at this point. Your GP just isnt qualified to manage the symtoms you told us about, nor is she capable of reading an MRI.
And you were right- MS does present differntly in everyone. THe first thing you should consider, if you do have the disease, is deciding if you want to get on a diseae modifying drug (shots) which will prevent new symtoms and reduce the relapses you might have. I had ON 3 times, started on Rebif and havent had a relaspse in almost 5 years.
,
Nikki
Of course you are very right Nikki! And my doc made it clear that I needed to see the neuro and she is the one setting up the appt. And believe she knows me very well that is why she told me to research before I see the neuro, not because she is incompetent. She has been my doc for a very long time and she knows I like to have a thorough understanding of what is going on. She has tested me throughout the years with lab after lab, and my bloodwork had ruled out Lupus. And I assure you I have never been bitten by a tick before! My mother was always very cautious and kept her eye out, since she was a dog breeder and always on her toes about her dogs getting Lyme! She used to check me as well as the dogs when we would come in, clothing and all, lol.
The MRI Center are the ones that give the summary of my MRI. She simply read it and told me the news. The symptoms I have I do understand are also related to other diseases. But they have been focusing on my optic neuritis and now the fact that I continue to have parasthesis only on my left side.
Jen. Im glad to hear that your doctor isnt giving you this advice without reason or rhyme! Sounds like you are in good hands. Dont underestimate the tick thing. My brother has Lymes, never had the bullseye rash, swears he never pulled a tick off himself- to this day, has no idea where Lymes came from - but he definately has it. He has been seen by many Lyme literate Docs...so never rule out anything!
Anyway happy to hear you are getting good advice.
Keep us posted!
Nikki
