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Withdrawal symptoms mistaken for brain disease


[Ka...]

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Hello, After 3 months off K, I got up one morning and my words were slurred and I couldn’t get my mouth to work for awhile. I thought it could be withdrawal, but my husband wanted me to get checked. My regular doctor sent me to neurologist. She did MRI, MRA, EEG, and ultrasound of carotid, I was home for an hour and now she wants me to get another MRI with contrast and a spinal tap. She is difficult to understand but she said something about brain tumor or MS. I am terrified and don’t know what to think. I told her about withdrawal but she didn’t seem to care
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Wow, that's scary, I don't blame your husband for wanting to get you checked out!  I had difficulty talking and forming words and felt out of breath but I don't think I slurred my words and while I felt like my mouth didn't work, I don't think it was outwardly noticeable to others.

 

I wonder if you could ask to speak with your Dr again so you can fully understand her reasoning for further tests, the fact that you have difficulty understanding her should lead you to ask for clarification so you won't have as much anxiety about what she's proposing.

 

I feel its important to rule out health concerns we can't attribute to benzo withdrawal but for your own peace of mind, I wonder if you could have the MRI with contrast but wait for the results of that before getting the spinal tap?

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It is always best to rule out any other health issue.  I know it is stressful but it’s better to know either way.

 

Sending love and prayers

 

Love

Fiercey

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Ok #1 thing is that doctors don’t believe withdrawal exists.

So the fact that she didn’t care and wants to double check everything else makes sense. Healthy people don’t have these symptoms so there must be something wrong.

Yeah....I had a brain MRI with contrast in acute.

Nothing. Totally healthy.

 

If you’re in active withdrawal- I would bet money you’re having withdrawal symptoms. The likelihood you got MS suddenly or a brain tumor at the same time youre detoxing from psych meds? Yeah super unlikley.

 

PS - benzos never made me slur, but gabapentin sure as shit did. For a couple of hours. It was terrifying. I could barely move my face.

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Neurologist did MRI, EEG, nerve conduction test and ANA.  ANA finds any autoimmune diseases and other neuro. problems.  The ANA is a very good screening test.
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Yeah, I would totally wait on the spinal tap.

I had all that and more, including the spinal tap done at 4 months off because I could not walk or use my limbs...  They did not find any disease! It was all from massive drugs and WD!

I picked up a very good Neurologist along the way who totally believes it. He is good, but it took a while to find one that will do the research and really listen!

I mean, it is good to rule stuff out, but like someone else said the chances of us suddenly getting a horrible disease if we were super healthy before...are small.

I know it made me feel better to have tests ran...but I could have done without some of them.

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Ok #1 thing is that doctors don’t believe withdrawal exists.

So the fact that she didn’t care and wants to double check everything else makes sense. Healthy people don’t have these symptoms so there must be something wrong.

Yeah....I had a brain MRI with contrast in acute.

Nothing. Totally healthy.

 

If you’re in active withdrawal- I would bet money you’re having withdrawal symptoms. The likelihood you got MS suddenly or a brain tumor at the same time youre detoxing from psych meds? Yeah super unlikley.

 

PS - benzos never made me slur, but gabapentin sure as shit did. For a couple of hours. It was terrifying. I could barely move my face.

Everything IS NOT w/d...

I can talk for myself who had a brain tumor diagnosed this year i in january not showed on MRI 2017 when CT.  I have No other symptoms than the one i have had since tolerance w/d just more intense. MyEEG was also not normal.

I think it is a good doctor checking up all those tests. Not saying it cant be just w/d it probably is but ppl said that to me too here on BB. Like why are you taking these test it wont show anything etc...But we dont know whats going on in another persons brain. If I had listen to all advise I got when I was posting about doing MRI and EEG tests that it was waste if time I had missed my tumor. I think in any medical advice we should be more careful. 

Bc not everything is w/d.... :o

I also have white mass matter changes looked like MS but my doctor said w/d caused bc liquor fluid was negative.

I hope yours will turn out normal.

 

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Neurologist did MRI, EEG, nerve conduction test and ANA.  ANA finds any autoimmune diseases and other neuro. problems.  The ANA is a very good screening test.

 

No ANA doesn't find any autoimmune disease! No, ANA doesn't find neuro diseases!

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When I went to the neurologist for benzo symptoms, he ran an ANA blood test and it was positive.  I was then diagnosed with Lupus.

 

I don't think it's that simple. I have a positive ANA 1:80 and have seen 3 rheumatologists in the past 2 years including at a teaching university looking for answers. None of them were willing to diagnose me with anything. All their other testing was negative.

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Neurologist did MRI, EEG, nerve conduction test and ANA.  ANA finds any autoimmune diseases and other neuro. problems.  The ANA is a very good screening test.

 

No ANA doesn't find any autoimmune disease! No, ANA doesn't find neuro diseases!

 

I meant to say that ANA finds some autoimmune diseases and some neuro problems.  My APS Lupus can cause neuro problems.  Geez!  No need to attack me with anger.  You sure know how to make a person feel bad. 

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Yeah, I would totally wait on the spinal tap.

I had all that and more, including the spinal tap done at 4 months off because I could not walk or use my limbs...  They did not find any disease! It was all from massive drugs and WD!

I picked up a very good Neurologist along the way who totally believes it. He is good, but it took a while to find one that will do the research and really listen!

I mean, it is good to rule stuff out, but like someone else said the chances of us suddenly getting a horrible disease if we were super healthy before...are small.

I know it made me feel better to have tests ran...but I could have done without some of them.

 

Couldn't walk or use your limbs?  Something's obviously wrong and docs aren't running the right tests or there isn't a test that will detect your problems.  You've obviously got a problem.

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Yeah, I would totally wait on the spinal tap.

I had all that and more, including the spinal tap done at 4 months off because I could not walk or use my limbs...  They did not find any disease! It was all from massive drugs and WD!

I picked up a very good Neurologist along the way who totally believes it. He is good, but it took a while to find one that will do the research and really listen!

I mean, it is good to rule stuff out, but like someone else said the chances of us suddenly getting a horrible disease if we were super healthy before...are small.

I know it made me feel better to have tests ran...but I could have done without some of them.

 

Couldn't walk or use your limbs?  Something's obviously wrong and docs aren't running the right tests or there isn't a test that will detect your problems.  You've obviously got a problem.

What some ppl dont know is that dissociation movment disorder can cause that. Dissociation is a group which also includes DR DP amnesia etc. Its a functional disorder caused by mental issues like severe stress anxiety etc. DP can make it hard to walk or use arms hands feets..

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It is good your Dr is making sure nothing else is going on.

 

I had a Lumbar Puncture - was clear as is everything else so far apart from spinal MRIs showing degeneration worsening very quickly from crushing muscle contracture and jaw joints being damaged.

The procedure itself was fine.

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Yeah, I would totally wait on the spinal tap.

I had all that and more, including the spinal tap done at 4 months off because I could not walk or use my limbs...  They did not find any disease! It was all from massive drugs and WD!

I picked up a very good Neurologist along the way who totally believes it. He is good, but it took a while to find one that will do the research and really listen!

I mean, it is good to rule stuff out, but like someone else said the chances of us suddenly getting a horrible disease if we were super healthy before...are small.

I know it made me feel better to have tests ran...but I could have done without some of them.

 

Couldn't walk or use your limbs?  Something's obviously wrong and docs aren't running the right tests or there isn't a test that will detect your problems.  You've obviously got a problem.

 

Nope it was all drug WD. Had just about  every test under the sun.

The muscle weakness, atrophy, neuropathy, and spasms were just so bad that I literally could not lift my legs no matter how hard I tried. And I was a high level athlete prior to 6 months of benzo and polydrug. So yeah, they would watch video of me just months earlier and then be shocked at what was before them. I would use all of my athletes mind over matter to lift my arm or leg 1 inch.

It was devasting and scary! Told me they were not sure if I would recover. Spent months in wheelchair and  24 hr care, man it sucked.

 

I am happy to say that at 16 months off I am much improved! The nerve pain  Prevented me from doing ANYTHING, it was unbelievable and unbearable, just sheer sobbing agony day and night without stopping. Finally ended up taking tiny dose of amitriptyline for the nerve pain (hate it, but it worked)

Took me months to rehab, starting with in the bed PT, then standing at the walker etc.

I still have left over nerve stuff, which is why I won't  do a success story yet. But I can live my life and continue to improve little by little.

I mean this time last year....I was in intolerable pain, wheelchair, had to be bathed and fed etc.........Now, I can go shopping, hit the gym, play with my family, go out with friends all in one day!

Still have muscle twitches all day every day, but not painful. And strength is about 75% what used to be.

But I'm hopeful!!!!!

 

PS my good Neurologist totally believes drugs did this to me...

He actually cried the day I was finally able to WALK into his office :smitten:

 

And sorry this was a little long ;)

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