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Posted
I have decided to get fully checked out by a neurologist at this point. I am concerned that I may have multiple sclerosis and at this point I just need to know. I was a user of benzos intermittently over a course of a few months and my problems may be a result of this usage. However, I am nearly 14 months out and have noticed what appears to me an uptick in my symptoms ( muscle tension/spatiscity in additional areas, greater gastrointestinal issues, numbness/tingling in additional areas of my body). This might be a setback or it might be something else. In addition, I am aware that people have been diagnosed with MS and it turns out that just needed more time to recover from benzo withdrawal. I have waited and been patient but there comes a point where I need some answers. If anyone else has been checked out for multiple sclerosis, what was that process like?
Posted

Hello MHW69! 💖

I'm so sorry that you are struggling! I'm a little over 15.5 months out and still have some sxs. I just would like to say that if you didn't have the sxs you are experiencing prior to benzodiazepine use, then what you are experiencing is just withdrawal recovery. It's a long hard process but know that it WILL all go away! As horrible as the sxs are....it is just withdrawal recovery! Time, time and some times...more time is what's needed.

 

It WILL go away...please stay strong BB! :smitten::hug:

Posted
The thing is that I might have had some earlier indications of the problems that I am now having. It certainly was nowhere near what I have experienced or am experiencing now but these issues may have been early clues of an underlying problem. Regardless, I seem to have taken some steps backwards and am wondering if something else is going on. The only way to get any of those answers is to pursue them. Believe me, I hope that the answers are that I don't have MS or some other serious non-curable disease. However, I can't discount the possibility that it is MS or some other disease process or syndrome that I am not aware of. 
Posted

Hi MHW,

 

I think there comes a time when this sort of investigation is sensible for reassurance. When is your appointment?

Posted
I have an appointment with my primary care doctor this Friday. I believe that once I lay out my symptoms that she will order a bunch of blood tests and ,if there is nothing there that is definitive like a B12 deficiency, then I will be referred to a neurologist. I suppose that we shall see.
Posted
What kind of GI issues have you developed?  I ask because recently at five months I am suddenly not digesting my food and am having trouble keeping food and am losing more weight.
Posted
Just letting you know m- i had the samw symptoms after long term z drug use (similar to benzos) and thought i had ms too- particularly because of the numbness and tingling. They will most likely send you to a neurologist and have them run tests (mri to brain to see if there are lesions). I had multiple neurologists, pc doctors, rheumatologist, orthopedist, gastroenterologist, psych, etc look at me-- they will do mri of brain, spine, emg of nerves, blood tests, had a cat scan-- (im a bit of a hypochondriac but i feel its better to have things checked out in case) -- long story short all negative- so i believe its the benzo/z drug damage.  they kept telling me i was suffering from anxiety with only one doc acknowledging the pills as a possibility. Anyhow im a few months out and slowly getting better. Hopefully i can write a sucess story one day. But get all things checked out- and if they cant find anything its prob damage caused by the pills that hopefully will heal. Good luck and keep us posted.
Posted

I went through the process short of a spinal Tap. MRI of head and spine and movement tests . I even did and emg .

 

Youwill be fine. I didn't want to do a spinal tap

Posted
I too fit all the MS symptoms and my doc was sending me to get the full work up but I stopped after the MRI of my brain. It FEELS like there is something majorly wrong with me and MS fits very well but I can't trust anything right now. Plus doesn't it seem strange that so many of us would stop benzos and then be suspected of having MS based on our symptoms? It certainly points me away from thinking I do have MS.
Posted

I went through the entire testing process and was told by an MS specialist that he believed I had relapse/remitting MS. I never bought into the diagnosis, and now this same specialist doubts it as well. At the time, I had fast tapered off an SSRI and was experiencing numbness, tingling, headaches, blurry vision, disequilbruium, anxiety, etc. It was very similar to benzo w/d. In any case, I had two MRI's, two Evoke Potential tests, eye tests, physical testing, and 4 attempts at a Spinal Tap. There were lesions found on my brain but all other tests were negative. The neurologist admitted that lesions can be caused by a variety of things (migraines, concussions) and/or they could have been organic (from birth). But he did say the lesions were suspicious. So, I was rebooked for 6 months for another MRI. In the meantime, I went back on my SSRI (because of this scare) and ALL my symptoms went away. Coincidence? When I asked the neuro about this he didn't dismiss it and said it still could be relapse/remitting and we would re-evaluate in a year. During that time, I started tapering my SSRI again and was prescribed Ativan to help with the anxiety, I was told it was nothing like an SSRI and would be safe to take  :tickedoff: I cold turkeyed off this "safe drug" and ended up with such spasticity and pain in my legs I was admitted to the hospital for two weeks. I had another MRI and attempted Spinal Tap and there was a large lesion found on my spine. The radiology report found the lesion suspicious but is not typically in an area where they would be found, also, the ones in my brain were gone and there were a few small new ones. I do NOT believe I have MS. No ther tests, besides the lesions have come back positive nor has any physical test...yet, all the sx are present.

 

Sorry....I got a little long winded there  :laugh:

Posted
Before I went through my taper, I went to see a rheumatologist and neurologist. I was having what we know now was tolerance withdrawal, so all my sx were mild in comparison to now, but still problematic. They are all similar to MS symptoms. They were prepared to rule out MS with a MRI of my brain, but i decided to not go through it. I've read so many stories, and know someone personally, who was misdiagnosed with MS as a result of benzos use. I pray we all recover fully.
Posted

Carol Jean,

 

The GI issues that I have experienced have been diarrhea, colonic spasms, and abdominal pain that may be painful peristaltic contractions since the pain is wavelike in nature. The spasms and the wave like abdominal pain are relatively new as I started experiencing them in September. I also have experienced some tingling in my hands which is also new and some pain in my hip. I don't know if my problems are MS related or not. The things that have me concerned are (1) the emergence of brand new symptoms, (2) 2 problems that have gotten worse, and (3) the possibility that looking back further in time I might have experienced a couple of these issues in a much more minimal way that I wrote off as related to other causes at the time.

 

All I know is that things have taken a turn for the worse and the logical part of my brain says that I would be foolish to not explore the possibility that it is MS as the symptoms are so similar. If they can't find anything and conclude that it isn't MS, this would definitely be reassuring and I would wait for my body to figure this out. If it is MS and I was given this diagnosis after an investigation, then it will be a long struggle and I will see accumulating issues which would solidify the diagnosis. If it isn't MS and they mistakenly gave me the diagnosis of MS anyway, then I would likely see the issues eventually disappear over time and would be much more confident that it was the drugs. Regardless, I can't see the real danger in gaining more information especially in light of the possibility of a serious underlying illness.

Posted
By the way, the symptoms that I listed above are not my full set of symptoms. They are just the GI and my new symptoms.
Posted
I am going to have to wait 2 months for a neurology appointment. Wow.
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