Well, I just got back from the supposed 'mystery solver' doc in Boston. I liked him, did nto treat me like a number or anything. He says it is stress. He says the symptoms align most to MS but there are things that do not add up:

I pass all in office neuro tests
My symptoms bounced around at onset last fall: an hour here, an hour there. Usually the symptoms would last longer than that in each spot.
My systemic progression of sx without a medical thing becoming aparent
He said lesions usually precede symptoms, not the other way around so if I had a clean MRI before with symptoms, then they should not pop up now.


He says my other docs have done all the right testing and they are all negative. Nothing has been missed.

So, he wants me to see a neuro psychologist. He said he would do another round of MRIs to set my mind at rest- it's been 8 months since the last one. But additional testing is not helping me get over the idea that this is physical.

So, here is the help I am requesting:

do the items above make sense to you? They do not all agree with what I've learned on this board and other places.
Does anyone know of a good Neuro Psychologist in the SE Mass area? My psychiatrist thinks stress is not my problem so I doubt he is going to refer me to anyone decent.


I found out though that I have had the western blot for Lyme and there are NO BANDS! So, that is out I guess. I am not sure what to do at this point. This is the 2nd doc that told me this is stress related although everyone who knows me cannot see it. This guy came highly recommended and his reputation is really good so I'm thinking I should just accept his opinion and see a neuro psych. If it really is that, it is much better than having MS! My insurance will cover it so what have I to lose except some time but if all the tests are coming up clean, I guess I have plenty of time to waste! I had another episode yesterday where I could not walk for a few hours but it resolved. Maybe if I go into denial, I'll feel better and be able to handle work easier.

Thanks for all the help everybody! My MRI appt is the end of June.:rolleyes:

So sorry to hear you're without answers. Here's what I've learned, in case this helps. The MS causes the lesions, not the other way around (and I don't know how long it takes for the lesions to actually form). So while I understand what he's saying, there are plenty of people who you've even read about who have sx but no lesions (although they might be talking about the brain.) Lesions can be present on the c-spine -- and I JUST learned that they can also be present on the thorasic spine as well. Don't know if this helps your situation at all but at least it might give you some more questions to ask since you're getting in that tube again! Don't know if you've had the c-spine already but you might want to ask about the thorasic. (Just FYI, I have brain lesions, none on my c-spine but my doctor also wants one of the thorasic.)

I don't think it would hurt to go see the neuro-psych regardless. I think it's good that he is willing to do some more testing and cares enough to consider that your sx might be rooted somewhere else. It is true that the mind is a very powerful thing and "psychosomatic" does NOT mean that what you're experiencing is imaginary. All it means is that something else might be causing them.

I'm curious -- specifically, what things did the doctor say that you feel did not agree with what you've learned?.

Hi Beary- thanks for responding. I thought that many people had sx without lesions and the lesions could appear later in the progression.

Never mind- venting

Hi Beary- thanks for responding. I thought that many people had sx without lesions and the lesions could appear later in the progression.

Yes, exactly. That's why I wrote that the MS causes the lesions but I don't know how long it takes them to form. The real question is if the lesions have to be present to cause symptoms. From what we've seen just here, the answer seems to be no and that's why so many people have a hard time getting dx. (And this could simply be due to technology -- the MRI machines now can detect things that old ones couldn't -- and what might the MRIs of the future be able to find??) It's the chicken or the egg question once again -- okay, so MS causes the lesions but what causes symptoms, the MS, lesions or maybe both?

To further confuse the issue, there IS a lot of stuff out there about where and how symptoms might manifest, correlating to where the lesions are. But again, 2 things -- I don't know how long it takes them to form and also, lesions can be present on both the c-spine and t-spine. Hey, and how about a 3rd thing? Might they one day find that there are types of MS that don't inevitably produce lesions? :confused: Who knows?

Anyway, I'd go see the neuro-psych but also ask about doing MRIs on the portions of the spine (c and t) where there can be lesions.

zandvoort,

just wanted to add my 2 cents worth too. i am seeing a really good neuro who is taking my sx seriously (something that no one has) and he's 95% sure i have MS, but no lesions on my MRI's and I had a clean LP.

he told me that just because i have no lesions did not mean that i did NOT have MS. he stated that he had a patient in a nursing home paralyzed with clean MRIs and clean LP, but has dx'd her with MS.

so we are waiting (story of my life :rolleyes: ), again. i go back in Dec and in Nov he wants another MRI of my brain since it's been a little over a year since that's been done. i have had sx since around 1991-1993, small subtle things that would come and go. some sx would come and hang around for months or years and then clear up, just like....that. my neuro told me that lesions don't always show up first. it's such a complicated and complex disease with many overlapping sx with other conditions and you basically have to rule everything else out first.

i know about the "hurry up and wait" game and also the 15 or so different dx's from UCTD to Fibro to Hyperthyroidism to Hypothyroidism to Raynaud's to Sjogren's to Interstitial Cystitis and etc, etc. it can be so frustrating and i feel for you and pray that you get the answers you need. as you know, this is a good place to be to stay on top of things and get support. it has been a tremendous help to me.

wishing you well and you're in my prayers.

michelle

Thanks everyone- I am going to find a neuro psych and try real hard to resolve by that route- as I said- if this is it, it will be better than having MS! :)
My doc did agree to one more set of MRIs since it has been 8 months since my last and I told him I would be able to enter into the psych things more earnestly if I could get a current clean MRI. I will stop reading/posting on this board soon too so I can enter into the psych thing wholeheartedly. If it IS resolved through psych therapy, I will come back to the board and say so. At this point, I would LOVE to hear form someone who has sx resolved this way but I suppose if that is the case, they no longer have interest in the board. My doc seems to think there are lots of people out there who have resolved this way.:wave:

As long as you're going to visit "the tube" again, it might be worth seeing whether or not it makes sense to do a brain/c-spine instead of just brain, just to be thorough. At least would be worth inquiring about. Good luck and yes, please do keep the board posted! :)

Beary- My order is for brain and "spine". I think he said it was the C spine. The spine is 45 minutes. do not know it they could do more than one section in that time. Both are with and without contrast- a new MRI center for me.

I'll let you know how it goes- June 25 is appt and I am not sure if I will get the results before I go on vaca on the 28th.:wave:

It probably is, good! Yes, they can do both at the same time and it's actually faster than doing them both separately. That's how I got mine done the last time but mind you, I did not have contrast so that will add some time on. I was originally going to do both separately and the place explained to me that each (again, without contrast) would be about 30 minutes each (60 minutes in total) but if they were done together, only 45.

Good luck - and hope you have a wonderful time on vacation!!! :wave: