AggrevatedinSD
07-07-2007, 04:10 AM
I am new here and wondering about alot! I have had the brush off and my life sounds like some of yours.
I have had an MRI that shows increased lesions throughout my brain--between 12 years ago and now; I have a list of symptoms that I started with the beginning of May. I have test results that make some sense, however I am no authority! I have been to a neuro doc that sent my MRI to a hospital for a radioloist to go over and he found a(n) "area of concern" so they set up a very body wrenching lumbar puncture...aka...the torture test! That showed nothing out of the ordinary. Most of the symptoms have calmed down and only the inability to take direct sun and heat, and the tingling sensations which are mostly in my legs, a bit of dizziness and nausea when it gets real bad are about it. I was a disaster by the beginning of June, so I had to take a 12 wk leave (FMLA) from my 48 hour a week job...which I love!
So now the neuro doc has no intention of seeing me again, told me I need a shrink for stress! Now can stress cause the tingling and numbness, and lesions on your brain?
I have had an MRI that shows increased lesions throughout my brain--between 12 years ago and now; I have a list of symptoms that I started with the beginning of May. I have test results that make some sense, however I am no authority! I have been to a neuro doc that sent my MRI to a hospital for a radioloist to go over and he found a(n) "area of concern" so they set up a very body wrenching lumbar puncture...aka...the torture test! That showed nothing out of the ordinary. Most of the symptoms have calmed down and only the inability to take direct sun and heat, and the tingling sensations which are mostly in my legs, a bit of dizziness and nausea when it gets real bad are about it. I was a disaster by the beginning of June, so I had to take a 12 wk leave (FMLA) from my 48 hour a week job...which I love!
So now the neuro doc has no intention of seeing me again, told me I need a shrink for stress! Now can stress cause the tingling and numbness, and lesions on your brain?
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Sarahlou
07-07-2007, 08:50 AM
Hey aggrevated, just thought i'd say hi and also say that you mustn't give up when you know something is wrong!! Doctors are not always right and sometimes we know our bodies better than they do!! How dare he tell you that you need a shrink, i hate it when they make you feel like its all in your head!! Its just wrong!! Anyway to my mind white spots on the brain need to be investigated further as its not normal.......I'm not saying its defo MS as there are other reasons that can cause this such as infection or migranes but all the same you need to have piece of mind...........Keep going until you get the treatment you deserve...........
Take good care
Sarahlou
Take good care
Sarahlou
KTMorra
07-07-2007, 09:17 AM
HI Aggrevated
I more than understand your frustration. It feels like a slap in the face when a Dr doesn't appear to "get it" and tells you its all in your head so to speak. I was just diagnosed in February of this year after having major problems for almost 10 yrs. It wasn't until I couldn't walk into his office without assistance and I couldn't see from Optic Neuritis did all the pieces of the puzzle come together. My leisions aren't in the usual MS place, they were hiding in my neck and thoracic spine and my Lumbar puncture came back basically fine.
I'm curious as to whether or not you had any kind of treatment when you started feeling so bad in June, like steroids or other medications, and what tests besides your LP and MRI did the Neuro run on you?
Granted some flare ups go away without steroids but from what you are saying this one really kicked your butt.
If you are still having problems I wouldn't hesitate to get another oppinion. Try and locate one that specializes in MS if possible. It may or may not be MS but either way you know your body and this is not normal.
Don't give up, you deserve to be taken seriously.
Take Care
Kt
I more than understand your frustration. It feels like a slap in the face when a Dr doesn't appear to "get it" and tells you its all in your head so to speak. I was just diagnosed in February of this year after having major problems for almost 10 yrs. It wasn't until I couldn't walk into his office without assistance and I couldn't see from Optic Neuritis did all the pieces of the puzzle come together. My leisions aren't in the usual MS place, they were hiding in my neck and thoracic spine and my Lumbar puncture came back basically fine.
I'm curious as to whether or not you had any kind of treatment when you started feeling so bad in June, like steroids or other medications, and what tests besides your LP and MRI did the Neuro run on you?
Granted some flare ups go away without steroids but from what you are saying this one really kicked your butt.
If you are still having problems I wouldn't hesitate to get another oppinion. Try and locate one that specializes in MS if possible. It may or may not be MS but either way you know your body and this is not normal.
Don't give up, you deserve to be taken seriously.
Take Care
Kt
AggrevatedinSD
07-08-2007, 03:16 PM
Hey Kt
What seemed strange to me is when I was told I needed to see a shrink, I wanted to tell the nurse that yes, this is all in my head and I have the MRI to prove it! lol...
Anyway, no I haven't had anything done...no meds except for pain meds after the 2 blood patches and a very painful lp. The neuro doc saw me one time, did not look at the previous MRI reports from 10 and 12 years ago, or any other part of my med records that they ask for-but couldn't find until about 3 days later in their office. I don't know if he was a dx doc or what, but he was no more interested in seeing what was going on than nothing. They did do the envoked potential test, but that was normal too. Every test for lab is normal too. One was high, but couldn't get out of the nurse what it was. B-12 is fine, proteins, glucose and the rest was good. He said he was going to send the scan to the hospital to have the Radiologist look. That's how the lp came to be. He has no intention of seeing me again and had his nurse tell me that I needed to follow up with my doc here because there was nothing he could find wrong. I needed an evaluation for stress! I can definitely show this guy stress! Very, very frustrating! So much of what I see here is very familar to me and no I don't think everything is normal, but it sure makes you doubt yourself.
Thanks for the reply...
What seemed strange to me is when I was told I needed to see a shrink, I wanted to tell the nurse that yes, this is all in my head and I have the MRI to prove it! lol...
Anyway, no I haven't had anything done...no meds except for pain meds after the 2 blood patches and a very painful lp. The neuro doc saw me one time, did not look at the previous MRI reports from 10 and 12 years ago, or any other part of my med records that they ask for-but couldn't find until about 3 days later in their office. I don't know if he was a dx doc or what, but he was no more interested in seeing what was going on than nothing. They did do the envoked potential test, but that was normal too. Every test for lab is normal too. One was high, but couldn't get out of the nurse what it was. B-12 is fine, proteins, glucose and the rest was good. He said he was going to send the scan to the hospital to have the Radiologist look. That's how the lp came to be. He has no intention of seeing me again and had his nurse tell me that I needed to follow up with my doc here because there was nothing he could find wrong. I needed an evaluation for stress! I can definitely show this guy stress! Very, very frustrating! So much of what I see here is very familar to me and no I don't think everything is normal, but it sure makes you doubt yourself.
Thanks for the reply...
AggrevatedinSD
07-08-2007, 03:25 PM
Hey sarahlou
I am wondering about the location of white spots...I don't know where they are to confirm ms or anything else, but mine are on the frontal and parietal areas and near the spinal cord. All I know is I saw my scan and it looks like someone splattered white paint on it. It's amazing to see something like that and have someone tell you they don't know. They are the ones getting the big bucks to find out...and those of us without insurance don't have the time, money or patients for them to get it!
Thanks for the reply...
I am wondering about the location of white spots...I don't know where they are to confirm ms or anything else, but mine are on the frontal and parietal areas and near the spinal cord. All I know is I saw my scan and it looks like someone splattered white paint on it. It's amazing to see something like that and have someone tell you they don't know. They are the ones getting the big bucks to find out...and those of us without insurance don't have the time, money or patients for them to get it!
Thanks for the reply...
MSNik
07-08-2007, 05:53 PM
Hi, just wanted to point out that this is why we always remind people to keep, or get a copy of their scans and reports...not that you did anything wrong, and yes, you should be getting more definative answers- however, in the near future, youll be getting a second opinon from SOMEONE who is going to ask you if you have copies of your films and reports....trust me, it never fails, someone will want to see this. Try, if you can, to ask for a copy from the place which did your MRI. THey are required to give you a copy for your records...you might try asking the doctors office where you go, for a copy of any notes, and reports that they have saved..my doctor is awesome about giving me things that I ask for. He says "he doesnt have anything to hide" which so far has turned out to be true..
In your case, Id start a file of things which you have been thru, including tests and results...you really do need a second opinion.
N
In your case, Id start a file of things which you have been thru, including tests and results...you really do need a second opinion.
N
AggrevatedinSD
07-08-2007, 06:57 PM
Hi, I cannot get a copy of previous records here. They were faxed and they want $50 them. The MRI report I do have, but that was to take with me to the neuro. I made a copy for myself and my mom. With 4 kids moving things all the time, I always make sure I have extra! I want the other 2 reports and copies of my Mayo Clinic report from 12 years ago.
This time--exacerbation-- really took alot out of me...I had to quit working because of the dizziness. I work around vehicles including semi's and the dizziness was just too much. The worst is over, but still afraid to try it again. With it being 103yesterday the heat is not a good thing for me. Where I am the humidity is a big thing too. I guess when it's time I will know.
Thank you for the reply!
This time--exacerbation-- really took alot out of me...I had to quit working because of the dizziness. I work around vehicles including semi's and the dizziness was just too much. The worst is over, but still afraid to try it again. With it being 103yesterday the heat is not a good thing for me. Where I am the humidity is a big thing too. I guess when it's time I will know.
Thank you for the reply!