Lesions found.: Results are in and I have... - My MSAA Community

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Lesions found.

Stepinup profile image
21 Replies

Results are in and I have 2 Lesions located on my frontal cortex and my basal ganglia. I'm on Gabapantin (spelling?) 300mg three times a day...knocks me on me feet! But pain is better than last week. The Neuro can't tell me why I have lesions or how it happened. Can't be diagnosed with MS right now because they don't know if it is due to my 20 yrs of taking Effexor (I am trying to get off of right now) which is going well for me!

I am really glad that they found out what I have and that I am being treated.

Stephanie

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Stepinup profile image
Stepinup
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21 Replies
Royjr profile image
Royjr

Hope you feel better and they give you a diagnosis soon.

Karen-x profile image
Karen-x

WHAT? What? I have never heard of Effexor causing lesions. Someone tell me this isn't true. I have been on various anti-anxiety meds for 12 years, with Effexor on and off.

Stepinup i am glad you are feeling better. You will adjust to the gabapentin shortly. Were you the one wearing the eeg for 3 days? What did that show?

Stepinup profile image
Stepinup in reply to Karen-x

I don't know if it is true but I don't think that it was the Effexor. I was the one on the 3 day eeg, so since I grind my teeth at night (really bad) I may have had a small seizure but for some reason they can't confirm or deny a seizure happened.

Weird...I know.

I am feeling better because it is just a relief that there is something there that it is causing my symptoms.

Stephanie

CalfeeChick profile image
CalfeeChickCommunityAmbassador

I started Gabapentin about 3 weeks ago when I was thinking I was in my first Relapse. Dr. didn't think it was relapse, but started that med same dosage. It's really helped with ribcage tingling and feeling bound.. legs were still getting numb and tingling, so we increased to 2 caps in am, 1 @ noon,1@dinner.. Will probably increase to 2caps am and noon, 1 @dinner. I'm trying to be my feet more and pay for it with more numbness.. hopefully will someday have a remission.

Sure hope you get some relief..

GasLight profile image
GasLight

My thoughts and prayers are very much with you, Stepinup . It's certainly good news to hear that your pain has abated somewhat, but discomforting that your provider team is unable to give you any clear idea on cause. Has your grinding gotten any better?

Stepinup profile image
Stepinup in reply to GasLight

I didn't know that I grinded my teeth during sleep but I don't wake up at night Since on Gabapantin. So it's a possibility that it is getting better.

Stephanie

WAshingtongirl profile image
WAshingtongirl

Your doctor seems to be thorough in testing you. I'm sure you're done with all of that and just want an answer. Praying you get one soon.

Fancy1959 profile image
Fancy1959

Stepinup, it's Fancy1959. It is always frightening when lesions are discovered anywhere along spinal cord or in your brain cortex. What is Effexor and what is it used for? I am unfamiliar with the drug and what it is used for.

I am also on gabapentin and I take the same high dose you do. I very seldom have any negative side effects from the drugs/therapies I take. Keep us posted on your diagnosis and what issues you face. until then, take care. Remember, together we are stronger!

Stepinup profile image
Stepinup in reply to Fancy1959

Fancy1959,

Effexor is an anti depression medication.

It took me awhile to absorb the Results. The only thing I have going on with my spin is bulging discs that press on my spinal cord, no lesions were found in my spin.

agapepilgrim profile image
agapepilgrim

Stepinup

Karen-x profile image
Karen-x in reply to agapepilgrim

I just love you agape!!!

agapepilgrim profile image
agapepilgrim in reply to Karen-x

Karen-x Haven't talked for awhile too freaking angry at the medical and pharmaceutical world ( who am I kidding I have been one scared puppy hiding behind the couch like Mandi when I say "it's bath time!")! Don't you just love to try to deceive yourself? Like, man, who's gonna win!! Conquered the breast mass scare better than Braveheart could have( cause the final expert said there was mother there to biopsy-why did they send you to me?? "Oh, just to see if I would either hang myself or go looney-tooney back to the nut house! While waiting 3 weeks) The enemy has a bet going on with God, kinda like Job! Then there is the HVP cervical cells maybe pre-cancerous- that will truly send her looking for some street drugs at least! (Are you kidding?? That would mean going to my sisters 500 miles away and facing her, well I will await the test results with abated breath (what's that mean anyway). And, now, the long awaited, long resisted since June, 2016, Capoxone shot time has arrived. Cornered. Hiding behind the couch. No other meds will "work"

for me. Tried and failed. Flunked out. Bath time, doggie. Nurse has arrived. I know, tell her all our adventures! Keep her totally entertained for 3 hours!! Laughing! Amazed at all we have done(hubby and me) bring out the photos of life threatening white water rafting scene, carrying 50 lb packs on AT 10 day hike. Yes! She is buying it! No shot yet! Whoops! I see the look! Time for business. I get out permanent blue marker. Don't show me where- mark the places on my body. Total shock on nurses face--I can't mark on your body! "Why not? You walk out that door I will not remember one place you said! I have MS!" Well, I do, too, and I refuse to mark your body! (Am I crazy??? I thought it grand idea! Ok Frank you mark where she says!) ok, move fwd, frank gave shot, I'm still living, still reading, so I guess I will move on now and see what Job must endure next

Karen-x profile image
Karen-x in reply to agapepilgrim

You sweet thing! You have been through the ringer! Job is one of my favorite books, I wish I could KNOW I would be as faithful! Its like when people say, why me? I think, why not me, I'm not that special so of course I could get MS, or cancer, or whatever. I have no immunity from the harshness of this world.

What do you mean no other meds were working for you? I often wonder about that, like did your disease progress exponentially? I have only ever been on copaxone. So I get you about the nurse, the spots to inject, the welts that develop....

agapepilgrim profile image
agapepilgrim in reply to agapepilgrim

Karen-x I was just trying to be funny and make you smile, not complaining!! Aubagio made my chronic bronchitis flare up severely headed to pneumonia (which I used to get about twice a year before vaccines) and also asthma. Neuro said any oral med would do that since they all would affect my bronchitis. Hopefully, Capoxone won't because it doesn't affect major organs (or something like that!). We shall see. The clinical trials showed 1% did have bronchial problems, so I am praying I will not be among that 1%! Guess I have lost my ability to make people laugh!

Karen-x profile image
Karen-x in reply to agapepilgrim

No you haven't! I was laughing. Just replying to the things that touched me.

RobertCalifornia profile image
RobertCalifornia

I started on Gabapentin and Bacolod 3 weeks ago. I have cut the balcofor to one half a pill once a day. I take 300 mg 3 times per day for pain. At first I was really foggy and weak. But I am improving day by day. I am used to the gabapentin and do not feel foggy anymore. Pain is subsiding. This all started with a bout of the flu just before Christmas. Make sure you find an MS clinic or at least a neurologist that specializes in MS. Good luck on this difficult journey, but know you are not alone nor are you crazy.

Stepinup profile image
Stepinup in reply to RobertCalifornia

Thank you RobertCalifornia!

I have been researching about my lesions and I see that there is only an underling cause for this to happen.

Hopefully I can see a Neuro specifically for ms.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Stepinup lm so glad that your feeling a bit better and on the road to finding some answers! But lm with Karen-x on this one! Wait!!! What?? Effexor causes lesions? Never heard of such a thing before. I have been on effexor for (thinking) 10 yrs now? Give or take. But will bring it up with my Neuro and my "head doc" who l see this wk.

I wish you all the luck in the world getting off it, from what l understand it's not easy. My Dr asked me once about going off it.😑😠 I asked him if he was outta his damn mind!😁 Good luck Stephanie!!!

Jes🌠

Stepinup profile image
Stepinup

I called my Neuro because I was confused about my results. 3 Lesions located (2 in my inner ear and one on My frontal cortex) I asked how could this happen and he said it's either I was born with it (no) or I recently developed it (most likely). So I asked them if I should get a spinal tap to role out any disease. His reply was..."no. I don't see how a spinal tap could benefit your situation. Just balance rehabilitation."

I'm confused as to why this is happening and everything seems to be "normal" with the Neuro.

If this was your situation...Would you seek a second opinion on this?

Stephanie

agapepilgrim profile image
agapepilgrim in reply to Stepinup

Stepinup did you go to a MS neuro specialist who's has written papers about MS? Study their background. Don't trust their insufficient knowledge!! Did you have contrast MRIs on highest quality machine available? I found out they are not created equal. I have also been thru 3 neuros before I have one who has sufficient knowledge and wisdom of MS to treat me! So YES get a second opinion! And 3rd if necessary!! My first neuro said I didn't have MS in 2010, even tho I had lesions; the current one said with all my symptoms and temp blindness at 17, I've had it for 50 yrs!!!

anaishunter profile image
anaishunter

interesting. I've been on effexor for 14 years (anxiety) and just got diagnosed with ms. My neuro never mentioned any relation between effexor and ms.

I've been thinking about getting off effexor for years, but this is a tough one to phase out. right now I'm glad I'm on it because it certainly helps with the ms scare.

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