Lesions On Brain----got Results Of Mris

[Maxine]

Hi -----

I have recently been having some pretty serious set backs with my spinal/chiari issues---which in turn has made my POTS symptoms worse. Very weak and more fatigue---pain ect.

So I had MRIs done to see what has changed. Of course the radiologist doesn't know much about this---so basically question marks in those areas. However, he noted leasions consistant with some type of TIAs----Ischemic of small vessel disease----or a demylation process----(possible MS---or something else). Said I should have clinical followup.

I sent my MRIs to a surgeon---and they will let me know if it's anything to worry about for sure. I know if lesions showed up without contrast---they will definately want to run more tests to check this out further.

I'm having a very difficult time just sitting up straight---or just sitting up at all. So wiped out----and OI is worse---low blood pressure---ect..........

I also have EDS---and I'm told with EDS there is a lot of pain, and I can't tell if the pain is from my spinal issues or the EDS----but I feel very unstable in the cervical/cranial junction as usual.

I'm signed up under a new name on here---and if you want to know who I was before---please send me a PM----and I will e-mail you from my new e-mail address. Unfortunately I was stalked out on this web page and maybe another---and information was shared...........soooooooooooo now have lost touch, and also been under a lot of stress---and stress is one thing I don't need on top of the stress I already have. Some of you may already know me---based on my postings.

I haven't noticed very many responses to my posts---so I'm not sure what is going on.

A hint---I've been on here almost since this website began---and I've been a patient advocate and supporter for over 5 years------I still continue to try and educate medical professionals on dysautonomia-----do my best anyway..............

This is sort of a new beginning for me, but unfortunately I feel like a part of me is missing--------devastating what a stalker can do. I chose to come back here---as I need support ----and want to offer my support right along with the rest of you.

Take Care,

Maxine :0)

At this point I watch very carefully what I post

[dizzygirl]

HI!!!

what part of the brain are the lesions on? you allready know that i have a lesion on my pineal gland..(jury still out on this but hopefully not for much longer)

also..Any chance you'll hear back from the surgeon before head off for you appointment?

Maybe this can help explain why you have had such a set back (or somewaht explain I mean) on such a set back...

hang in there.. and I hope that you get some answers and help/relief soon dear.. take care....

big hugs

dizz

[anna]

Hi,

We have EDS and ANS on the same family line, one of my half brothers (sure he has EDS too but never investigated) has leasions on his brain his Dr.'s Q. whether he has Ms or something else as his symptoms are too advanced for the small number of leasions he has!! So we think this could be an EDS thing as our aunt had lots of small brain bleeds that, I guess in time must leave some scaring. Any way my dad had lots of back pain and very bad headachs most of his life one of his Dr.'s thinks that that might have been down to fluid leaking into his spine due to his connective tissues weakness.

Bye for now,

Anna

[labas_2u@shaw.ca]

Hi (Maxine)

Hope all goes well for you.

Keep us posted!!

Maggs

[jdqm]

hi maxine,

welcome. i believe we have emailed eachother. nice to see you again!!

[Maxine]

Thanks for your support and HUGS---------

The lesions are in the periventricular while matter------saying it could represent sequela of chronic small vessel ischemic disease in the appropriate clinical setting-----------or it could be a demyelinating process.

It's hard to tell---as I have the spinal issues---I had one NSG say my congenital cervical spine stenosis is very serious and I need a laminectomy--------and he also said I may need decompression for the chiari-0---due to the other areas of compression of brain stem---the retroflex odontoid---(the bone in front of C-2 is tilted forward---anteriorly pressing on brainstem), and the prominant vertebral artery. And of course I have the cervical/cranial instability.

The one thing I know for sure myself is the instability because I can literally feel it. It's hard to tell where the pain is coming from---it's all in the neck/upper back/clavical/shoulders----and back of my head---I'm not sure EDS can cause all that, but I have also noticed my knees are starting to get problems. Basically I hurt all over---even my lower back---but I feel the worst of the pain in my trunk.

The other spine issues---- two surgeons have differing opinions on where I need surgery----laminectomy of cervical spine---(or possible decompression---and a definate cervical/cranial fusion.)

A couple of NSGs closer to where I live said my spine issues were not serious, but did agree that I have problems---however, they are not experienced in these areas as much as the other two NSGs who know about chiari related issues, EDS---and POTS--ANS dysfunction.

A new symptom I have noticed is I feel nauseated in the evening---which I never really had much of before. I always have a belly ache from the slow bowel motility---but I was rarely nauseated---quesy.

I have also noticed my fingers hyper-extending---and locking up.

I have been dropping things----like I can't feel I'm holding them---I don't know, can't figure that one out because I can still open a jar, but have noticed my strength isn't the same. The major wekness is in legs, and pushing/pulling things--like opening a door in a department store ect.

I will also be seeing an EDS specialist on Oct. 4th in Cincinatti.

THANKS FOR THE WELCOME JOY--------------

Maxine :0)

[Jacquie802]

Hi,

Hope the docs figure some stuff out for you. I know how aggravating it can be not knowing what is wrong. Hang in there!

Jacquie

[Dizzy Dame]

Yikes Maxine! I'm so sorry to hear about those legions! I hope the surgeon has some good ideas and that you start to feel a bit better!

-Lauren

[kmpower]

Dear Maxine:

There is a study (if you cannot find the link, I will look for it) where 10 patients with white matter lesions similar to yours, with diagnoses ranging from MS to cerebellar ataxia, were given gluten free diets. Not only did they improve (a high percentage of them), but the lesions disappeared. I don't believe they had known coeliac GI symptoms. Gliaden sensitivity can cause a lot of neurologic trouble in the absence of other symptoms.

Alternatively, or maybe also, check out the link between vitamin D levels and white matter lesions.

I might be off base in relating this to you, but if it were me, I would look at all my options.

Good luck with your searching. I hope you find answers and get some real help soon.

OLL

[mom4cem]

I hope you get some answers soon. Sorry to hear of the trouble you had which caused you to have to change e-mail all.

I really do hope it all turns well for you. Please keep us informed.

[Maxine]

Hi---thanks for the replies.

I don't notice any issues with glutin---other then heavy starchy foods---mashed potatos---potatos in general........make me symptomatic. I get symtomatic just from eating---I think from blood pooling....

However, I do have very low vitamin D-levels----but never heard of a connection with lesions on the brain---interesting----I'll have to check it out. I was prescribed vitamin D---but they wanted to give me a once a month pill-----I won't do that because if I don't tolerate a high dose well---then I have to wait a month to get it out of my system. I'm just taking a multi vitamin with vitamin D---------nad trying to get more sun on cooler day. The Doc said 10 minues on arms and legs is all I need.

At any rate---i'm sure if the NSG thinks I have a more serious problem relating to the lesions---they will let me know that I need further testing.

I have been so symptomatic lately-----mostly severe fatigue. I did have about one week when I felt fairly good---I don't know what that was all about, but I would like that to happen more often-----

Maxine :0)

[kmpower]

I do hope you get some answers soon. Just to clarify what I said: the patients with lesions had no idea they had a problem with gluten, no symptoms whatsoever. This was a test to see if the gluten caused neurologic/brain problems without other symptoms. The results were very high. They all had serious diagnoses.

[Maxine]

Sorry OLL

------------I didn't read it clearly----can you find the link---I would be interested to read it.

In the mean time---I'll try to find it myself also.

Maxine :0)

[Maxine]

OLL-----here's a couple links I found......I think they are the same study...........

http://www.medscape.com/medline/abstract/11483831

http://www.celiac.com/st_prod.html?p_prodi...-02106231005.69

Here's a link on vitamin D deficiency---------->

http://www.rense.com/general48/sunlight1.htm

Maxine :0)

[kmpower]

Hi again. Thanks for the links. I couldn't open the first one, but read the second one. It is similar to the one I heard about, and may have been the same.

Fascinating third link -- especially the part where the lesions get more numerous in the winter and less in the summer in some patients. I didn't realize they came and went so quickly.

Again, good luck with everything.

OLL