Irish, I'm sorry that you're going through all this. Like I said to you in an earlier post - I'm sure you're not making this all up. I can't say much about your MRI without seeing it. I can tell you that I just had an MRI today (so the picture is fresh in my mind), and the lesions are distintive white spots. I don't see any "splashes" or "lines". To me, it reminds me of a burn spot on a rug.

I would try seeing a general neuro. Don't bring up MS to them, just give them the MRI's and ask them to review the with you and point out your areas of concern. If you don't mention MS, you won't give them a chance to have a bias opinion. Don't send your med recs to them either. Try to just get a fresh, clean opinion.

Either way, we believe in you and we are here for you. Don't give up
!

PS: I understand the faith questions. I ask myself similar things every day.. Just trust yourself and your judgement and don't give up.

I second Shelley's wise advice. Get another take on those scans!

Melanie

Hi tamye, did you have a cervical/ spinal MRI. ?

Hang in there,,, as the lord is holding the other side of the rope!!!

I believe when one has the hug there are lessions on the spinal cord,,maybe I'm wrong. Second opinion very important right now, and when the Dr asked if you want ms,,,no but you WANT AN ANSWER, I guess no one knows how desperate one feels in the dark. When I was given my dx I felt relieved because I knew why all those symptoms. I'll never be as I was but now I'll learn according to this dx. It took me ten years thinking I was just going to drop dead one day and my kids will get my dx from my autopsy!! That's desperation and despair. I survived and been validated!!! Take care , love Alma

Hello

I would like to say thank you to Shelley, Melanie, and Alma for reading this post and taking the time to answer. You are special people who really care when someone posts a "help me" post.

Shelley, the "splashes" that were seen are where the ischemia was present, at least this is what I believe. I saw these "splashes" of white on pictures I looked at on the internet involving ischemia. yet when I questioned my doc about the round white circles that had thin white lines connecting them he said that was the ischemia. Does not sound right to me. I am not sure yet what I want to do about a neuro. The MS Specialist assistant told me that all I needed to do was get my MRI's and the doc would see me. She said that he based his decision on the fact that I had experienced the MS hug. I described what happened in detail and he said that no one who has not experienced one could know exactly what it was like and I had made him believe that I had one for real. So now the problem with that is that I am embarrassed to bring the MRI to him knowing that supposedly there are "no mass lesions". I do have real neuro problems such as my toes, the hugs, blepharospasms, the cognitive difficulties, etc...., even the neuro he recommended I see will know about the MS possibility. I am afraid of other neuros and I dont think I want to see any of them. They are cruel and arrogant and do not mind telling one that they are foolish and a fake. just my experience but vivid enough to make me suffer in silience for 5 years while my body continued to spiral downwards. Thinks for the advice I will try to find a way to make it work.

Melanie, same to you. I am going to take my scans to my "not-quite-a-neuroopthalmologist this week. He is having me get blood tests and he wants an MRI of my eyes and he wants it all STAT. He thinks I am suffering from Graves Disease which is involving the thyroid. Could be. I took meds for hyperthyroid when I was like 19 and they had me stop taking them 6 months later. Then when I was around 33 I started taking meds for hypothyroidism and took them for years since your always supposed to take them for life. Well as it went I went through the drama of becoming a guinea pig for the bipolar and managing 8-10 meds a day was too much for me. I eventually forgot about the cheap little pills for the thyroid and just quit taking them. They have tested me since and say I am fine.
>>>>>>>>However they never do all 4 of the tests and my new eye doc is doing all 4 so maybe there will be news. Also he measured my eyes and my left eye (wonder of wonders -- my left side again!) is a 6 and my right eye is a 4. I will update on that when I get the news.

Alma, You and I have the same kinda thinking. I have been just sitting back for the past 5 years gathering symptoms and watching and feeling as my first symptoms came and went and usually lingered longer and came on stronger. I just ignored them and often thought the same thing as you, that some day I would just drop dead or not wake up in the AM and then everyone would know that I was not faking it. I know it is bad to think this way but I would, in my most painful times, think to myself that it would be great if that did happen because then I would be justified. Even though I would be dead people would regain respect for me and know that I had been telling the truth all that time and not just wanting "pity" as my mom so eloquently put it. Now my mom says she did not mean it that way she is just so afraid of me--her daughter--having such a scary disease like MS. She saw a good friend die of MS but this was an older man who was dx'ed late in life and back in the '80's when their were no good drugs. Plus being a n older "man" it was more natural with this disease to strike him harder. She doesnt get that though.

I just have to try really hard from now on not to mention any illnesses to my family. I have alienated all of them because they "dont like to hear me complain about my illnesses". Well I personally get tired of my sister bragging about her daughters constantly and never getting a chance to say a thing about my own son's accomplishments, but I sure as heck am not going to isolate her because of it. It is just the way she is. I support her in anything she does or says. Afterall that is what "blood" is about. Guess I m just an old fashioned fool.

Well again thanks everyone. I was hoping more people would respond to my post. I dont know what I am doing wrong that more people do not read my posts or answer them. I try to answer a lot of other peoples posts so that they will see I am really a part of this society but, I dont know. I guess Im being moody and sensitive so just ignore me! luv ya all! Tamye

Irish, I can't say for sure why more people did not respond to your post, but if I had to guess, it's probably because it's long. When I post, I find if it's more then a paragraph I get far less responses.

As I think about it... I would definitely bring the films in. "No mass lesions"??? MS doesn't necessarily cause "mass lesions". You can get a dx with just one or two lesions - you don't need masses of them? I'm not sure what they would mean by this.

I did look at my latest MRI and I didn't see any white lines around my lesions, so not sure how if maybe that's why they are thinking yours are not MS lesions?

I'm sure your family means well but people just don't understand how hurtful their comments can be.

(((Hug))) Hang in there!

i really just agree with shelly's advice. and, there are neurologists out there that will believe you and all the symptoms you have been suffering with...don't give up! YOU are your best advocate.
many hugs, connie

Tamye.... I agree with Shelley about the long post. Most of us have vision problems and it is difficult to read the long post... and there are the cognitive issues most of us have. For me I can't keep my brain focused long enough to read some of the longer post.

I know you have a lot to get off your chest, but please don't judge the amount of support you have by the number of replies you receive. We all care and we are all here for each other.

I am sorry you are going thru this also. I am frustrated also with drs they have diagnosed me having transverse meylitis, could this be what you have, but they are not sure if it has become MS or what is going on with me. My symptoms are now worse and I need to find out why!

I dont understand the drs comment of "mass lessions", is he relating it to size, to clumping, to an abundance....what? Im sure he didnt explain that to you either tho.

MS lesions are usually oval or round in shape, I dont believe they have "tenticles" the lines, those might be more of the ischemia or even migraines or something because they also cause lesions. MS lesions they say are usually in certain areas of the brain as well. Maybe you need to take the report, and films to another dr for a second opinion.

Unfortunately Irish, it can take a very long time for a dx and ruling out everything else. It took me over 16 years for a dx and I acquired so many others in the process. MS in my opinion can box up many of the others and works in conjunction with some as well.

DONT GIVE UP THE SEARCH, only YOU truly know what youre feeling, you just have to reach the right dr to pay attention.
HUGS to you
Janel

Tamye, I know how frustrating it is for you. I also have those "hugs" and pain but don't have MS. I hope you get some answers soon.

Thank you to everyone who wrote in. I know that your obvious concern and support will carry me far! You guys are what keeps me going in this quest for the truth. Although I am a Christian I read something the Buddhists say the other day and it stuck with me: "Always search for the truth". Its simple, direct and to the point.

Speaking of "simple, direct, and to the point"....I will work hard for you guys with my writing. I am so wordy and it has always been a problem with me. I had to quit working for the HS newspaper because I couldnt stand NOT being wordy. But for you guys I will work hard. Thank you again and know that I value each and every one of you as a true friend and confidante!.............Tamye