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MS or acute wave 13 months out. help!


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hi ! at thirteen months out I have been hit with inner tremors, electric zaps, visual disturbances, feeling of hot water hitting my leg and other classic MS symptoms. they are mostly what I had in acute but have hit me out of no where. I am considering another MRI . Had one when I was in acute and it was clean but it has been a year...very frightened and wondering if anyone has had a similar experience this far out. I also had a miscarriage, got the covid vaccine and went on and off a short run of lexapro all in the last 8 weeks. thank you!!!! I was so close to healed....any words help!
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Hi, sorry to hear you're back in the thick of it.

 

Sounds to me like a combination of a few things, rather than MS but I'm far from a doctor so if an MRI would put your mind at ease, it might be worth having.

 

As you said you had all these symptoms in Acute. I'm really sorry you've had a miscarriage, this is obviously been very stressful for you and your body and if you throw in an experiment with an AD whilst still not 100% it's not surprising your symptoms have come back.

 

Just know this will pass as it did the 1st time, and again so sorry to hear about the miscarriage.

 

Hope you improve soon xx

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thank you for your thoughtful words. Hopeful an MRI turns up nothing once again, just so bizarre to have neuro wave this far out when I felt like I was healing. that being said, maybe your right. the hormone shift plus the AD could have slammed me back...thank you !
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hi! thank you for your response. I don't often hear about people having all the neurological MS type symptoms this far out so that was a great comfort..was that your last wave?may still have MRI next week to rule it out for sure... thank you!
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I started having those symptoms about a year b4 I started to taper. I had a brain MRI and mine happened to be MS I was diagnosed in Jan 2020
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Sounds pretty on par with benzo destruction rather than MS.  However,  don't get me wrong,  anything's possible but I can only imagine how many drs miss diagnose benzo withdrawl for MS.  My vision and MS type sx all hit at 5 months but I c/t and seems like this stuff can affect the nervous system negatively at anytime after cessation.  I totally thought I had MS before I knew anything about withdrawl then found articles and this site and realized this poison was fully responsible.  MRI's don't really identify this monster unfortunately,  mine didn't.  If I had it to do over I would have tried to take something that affects/increases gaba as soon as my vision issues hit in attempt to salvage my optic nerve and vision quality, but what is debatable because you've gotta withdrawl from anything that does and supplements/ vitamins are worthless for these CNS problems.
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Hey there!

Having been given many ADs myself, I will say that ADs by themselves can cause all the symptoms you listed! Even if you didn't have post benzo issues. So between the stress and the AD...if it were me I would ride it out. And of course if you need MRI to ease your mind then go for it...Lord knows I had a BUNCH of them and a spinal tap too! I did not have MS, though I very much looked like. It was all from the drugs.

I'm so sorry for your loss, and I hope you get to feeling much better soon :smitten:

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thank you for all the support and insight! anyone started lexapro will still symptomatic from benzo wd?

I am thinking I need to get a hold of this GA as its causing so many physical symptoms....any advice is helpful, I am so afraid of big Pharma!

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  • 4 weeks later...
Lorrigarfield- any updates on the MRI?  I think generally its a good idea to have doctors rule out things just in case.  But yes, knowing that it can be withdrawal should be part of your consideration as to what is going on.  I don't know if it's reassuring or not, but there are many folks who have reported strange symptoms, had MRI's and they don't find anything.. but everyone is different so its up to you if you decided to go ahead with it.  Please keep us posted.
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hi! thank you for your response. I don't often hear about people having all the neurological MS type symptoms this far out so that was a great comfort..was that your last wave?may still have MRI next week to rule it out for sure... thank you!

 

I had lots of neurological symptoms at 13 months. I think it was at 16 months I had an almost acute strength wave that lasted about 6 weeks and then slowly subsided. Things have been fairly uneventful for a while now at 32 months.

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an update! Negative for MS and had a negative ANA...phew. such a stressful time. That being said half my symptoms disappeared proving they were anxiety or wave, or both. Now , I am looking into Addison's , cushing and other endocrine related diseases as I have palmar pits, melanoma and some other skin symptoms. I also have oral keratosis ALL over my gums. they thought it was lichen planus but came up negative. at 15 months I am thinking now its a real disease because of damage done by benzos..can it possibly be withdraw with such outward symptoms THIS far out? thank you for all the responses!
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Glad to hear your tests came back negative. U said many symptoms have resolved- as u suggested could be anxiety related. Maybe some of the other sx could be anxiety related? Don’t know which sx u are still dealing with and which have resolved — but it’s always good to get everything checked put by doctors - but glad to hear the initial tests came back ok.
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hi! Symptoms that remain are thyroid disruption, some strange hyper pigmentation, most likely adrenal/endocrine also..gum inflammation that no periodontist can find a cause of even after biopsy and terrible anxiety about health even despite the good tests results. waiting on an endocrine panel...I see you tried lexapro. I am considering but of course scared of all medications after this experience. To your point, yes, many of the neurological symptoms, zaps, burning and visual were anxiety. the mind is a powerful thing! how are you feeling ?

Thank you!

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  • 3 weeks later...

Lorrigarfield - one of the worst parts about this whole journey is the health anxiety it produces.  Even after some positive results, you still feel like there are other tests missing, other explanations out there, etc..  I'm glad some of your sx went away after the good news and that's definitely a sign anxiety was causing them.  Any luck exploring the adrenal/ endocrine route?  Any answers?

 

Unfortunately for me - I haven't seen much improvement in years-- which has me doubting in "withdrawal" as an explanation, but rather drug induced "damage" or some other condition.  I wish I could report some positive news, but I'm not doing too well physically, and now emotionally as all the years of battling these health issues are taking its toll.  The mind is indeed powerful though - and it can only exacerbate any condition you have (benzo or otherwise) if we are under stress/ anxiety/ depression - so I'm doing my best to address that aspect of it through therapy... and possibly medication.  Like many others I am adverse to taking any sort of psych medication - but I've also tried the waiting around approach and it really hasn't gotten me anywhere, so I'm much more open to exploring the possibility of medications at this point. 

 

I really hope you get some answers and feel better -- but again-- happy for you that your initial tests came back all clear.

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  • 2 weeks later...

hi! thank you for your response. I don't often hear about people having all the neurological MS type symptoms this far out so that was a great comfort..was that your last wave?may still have MRI next week to rule it out for sure... thank you!

 

Neuro type symptoms are VERY common in benzo wd. Why is that? Because benzos work on your brain, especially the amygdala. That is the Fear Center of your brain, and the source of the famous "flight or fight" response. Benzos sort of numb it, which relaxes you, lets you fall asleep easier, etc. etc. So, when you go off benzos, either by taper or ct, your brain becomes over-stimulated easily and can produce almost ANY sort of weird, strange, unpleasant symptom. I always pictured it was my brain trying to heal itself but because I used benzos so darn long, it was having a LOT of difficulty recovering. I was told here on BB that it was all normal but in my mind, I figured I must have gone insane. I thought that, privately, for months. I found it beneficial to learn more about all of this, so I did. I got bogged down with stuff like "gaba receptors", which only confused me back then. But learning the basics was crucial for me, because then I understood WHY I felt so crazy and ill.

I remember sitting on my sofa, sort of rocking back and forth, trying not to have a panic attack, trying to NOT think about what I was feeling, trying to calm down using slow deep breathing. That helped for a few seconds but then back into the soup I went. I was told too distract but early on I was simply unable to do that. By perhaps month 3 I was able to distract, so I did and it did help- a lot. Just by getting my mind OFF what I was feeling and experiencing, I felt I had some sort of control again. I strung itsy bitsy beads for about 3 months straight. Because I am sort of artistic, I attempted to string the beads in some pretty pattern of colors and textures. Occasionally, I was successful in that. LOL! I kept those darn necklaces until last year, when I cut their string so I can re-use the tiny beads in another project! For years, just looking at those beaded necklaces made me recall how awful a ct off benzos was for me.

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  • 4 weeks later...

I have been experiencing an acute wave at 14 months off. Like you, there are multiple stressors in play, so I’m not sure what set it all off again. I was 85% before it hit, though, so I’m feeling pretty discouraged about now. My symptoms are primarily physical - all weird neuro symptoms exactly like you have - plus anxiety and depression when the physical stuff gets overwhelming.

 

Beauty

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