Finding a neurologist who understands medication-induced damage

[cymbaltawithdrawal5600]

Hi Barb,

 

I hope something really good comes out of this for you. You deserve a lot of good in your life for all that you have been through. Sending you big hugs!

[Meimeiquest]

From an uneducated point of view, it seems you might need another, that the most relevant thing might be the rate of change. Again, totally uneducated.

[Barbarannamated]

From an uneducated point of view, it seems you might need another, that the most relevant thing might be the rate of change. Again, totally uneducated.

Definitely agree.

[Janie]

Can migraines cause brain damage / white matter  or something that is showing on MRI's?  I had never heard of this. If someone has a reference I'd appreciate it.

 

I am thinking of seeing a neurologist.  Thanks for this topic and thread!  If I get an MRI I will share the results. 

 

It is possible to ask for a disk with the actual MRI pictures on it.  My husband has done that.  The disk included the software to open the picture files. Then you will have it for future reference, and second opinions and not have to make requests for the records each time you want it.

[Barbarannamated]

I don't have a reference, but have known a few people whose MRIs showed white matter hyperintensities that were attributed to migraine activity. I believe that would be vascular in origin, but not certain.

 

RE: copies on disc. Yes. Ask the imaging center for as many copies of disc as they will give at the time of the scan.

[Meimeiquest]

Dr. Told me that was a very common cause. I just don't have migraines.

[btdt]

 

For a time I was keeping a list on people with these type of issues in the white matter who were in withdrawal I think before I came to this site I had 6 including myself. I also did have a study long ago of the effects of antidepressants on the brain a quick google search says an MRI can detect changes in the brain caused by ssri they use this as a reason to take the drugs.

 

 

Do you have a copy of the list still?  Did they have any other health conditions that would explain the findings?

 

I just googled MRIs and antidepressant and found a rather creepy article, of dubious origin no doubt, that stated that the actual use of MRIs alone produced an "antidepressant" effect.  Similar to what they apparently find on MRIs of people taking drugs.  Would like to know where that research is. 

 

Some had headaches they did not specify any other illness.  If I have the list saved it is on a disc I have a ton of discs not marked so random searching would be the only way to find it since so many computer deaths... sorry to say.  I bet I could gather it again if I put my mind to it... I am just not near as keen to stay up all night searching for a small point ...not near as keen as I use to be. 

I would not be surprised to see damage like illegal drug use causes but to hear some doctor in good standing put it in print as such now that would surprise me... doubt it will happen. 

If it does it will be a major step in the right direction that will not surprise me at all... I think it is there I think they all know it... I also think nobody will spill the beans.

[btdt]

 

 

Just got word from Neuroradiologist who is reviewing my MRI and MRA. He wants to confer with a few colleagues and will get back to me Thursday or Friday. Just what I wanted for Christmas.

I am wondering if you did take any steroid suggested to treat the supposed attack on the brain? Are you having a second opinion to make sure that dx was correct? I feel like I am missing something here.. tho I don't know what.The place your at in withdrawal is known for health worries and stress as so many things are going haywire all at the same time any one would worry but at that to withdrawal and you end up with health anxiety. So they call it....What kept me going during that time was walking.. and deep relaxation I found online. My options were very limited but that may have been a blessing as I needed to slow down to heal. I hope you try some deep relaxationI like this one

it is followed by a healing meditation which come on automatically

I never saw a neurologist or any doctor who could look at the actual scan and explain it. I'm not willing to take steroids, chemo agents or antimalarial I've been prescribed.  This opportunity came out of the blue....to get a 2nd opinion from this neuroradiolist who specializes in difficult cases. Friend of friend kind of thing.

 

thanks for clearing that up I misunderstood and thought you were taking other drugs. 

[btdt]

Whenever I get any dx from a doctor now it can hit me at first then I eventually step back and say how does this change my life really knowing an opinion which in my opinion has a good chance of being in at least some sense incomplete or dead wrong... or otherwise compromised how does it change anything.  I will have more work to do looking things up and more confusion as most any medical topic you look at will have conflicting studies.  That is how it goes for me from stress to rest to search and around to the same old thing waiting it out to see if time and the wisdom within my body can heal itself.  Since I react badly to all drugs and many other treatments it does not leave much to think about. That is just me tho... I did want to put out there that an opinion these days is just that an opinion. 

[Barbarannamated]

Btdt,

 

I have to be pragmatic and know what I may be dealing with so I can plan. I'm almost completely dependent on my husband for daily function (groceries, bill paying, driving on some days when i'm especially disoriented, etc) and have nobody else should something happen to him (he's 10 years older). I'm a high risk for dementia ~ all of the women on maternal side have had some form later in life (vascular, Alzheimers, FTD) and my father has had a few episodes of temporary global amnesia and TIAs. Even with family around, all women on maternal side (grandmother and 3 daughters) have ended up in nursing homes. It's not just a matter of what I would or wouldn't treat, it's being prepared for how and where I would live, having a healthcare proxy, longterm care plans, etc. I don't like to think about it, but it's been my reality even before knowing about MRI findings.

[btdt]

Btdt,

 

I have to be pragmatic and know what I may be dealing with so I can plan. I'm almost completely dependent on my husband for daily function (groceries, bill paying, driving on some days when i'm especially disoriented, etc) and have nobody else should something happen to him (he's 10 years older). I'm a high risk for dementia ~ all of the women on maternal side have had some form later in life (vascular, Alzheimers, FTD) and my father has had a few episodes of temporary global amnesia and TIAs. Even with family around, all women on maternal side (grandmother and 3 daughters) have ended up in nursing homes. It's not just a matter of what I would or wouldn't treat, it's being prepared for how and where I would live, having a healthcare proxy, longterm care plans, etc. I don't like to think about it, but it's been my reality even before knowing about MRI findings.

I am happy you have some choices in the matter at least in the planning.  

I guess I am lucky in the respect I have a child who I guess when the time comes will put me wherever.  I am dependent in the same ways as you since withdrawal hit a long time ago. I am sure there will be few choices to make as there is not money to choose there are facilities with severe bed shortages and not much to decide many people here are stored in  hosp till a bed comes avaialbe. I don't like to think about it either and wonder how I would deal when the time came.  

I am hoping to get some years behind me before then.  I am generally well enough to drive most days now but watched a car rust away during withdrawal years I can't afford another car.  I guess we never know what is to come or when it is coming. I keep thinking I am going to heal more and maybe I am just kidding myself. Reading your post now makes me wonder if I am simply in denial either way I still choose to believe I am going to heal there is nothing else to do from my side there are no other choices to think of. 

You have not been off pristiq a very long time some of this you experiencing may well be withdrawal... and some the meds your still on : 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormones.  I tried trazodone once years ago did not like the side effects I am not sure how long you have been on it or why... but disorientation is a side effect.

Trazodone Side Effects - The Road Back

www.theroadback.org/trazodonesideeffects.aspx‎

•  
•  

 

We have listed 186 of the common Trazodone side effects below on this page. ... Edema of Extremities - Abnormal swelling of the body’s tissue caused by the ..... Vertigo - A sensation of dizziness with disorientation and confusion

 

 

 

..yet I do see your point. If you can plan I guess you should .... I am not sure how it works in your country... here only the very wealthy get any say in where they end up. 

[Meimeiquest]

You are right about long-term planning. Every one of us needs it. That's how Terri Schiavo became a household name .

[UnfoldingSky]

Some had headaches they did not specify any other illness.  If I have the list saved it is on a disc I have a ton of discs not marked so random searching would be the only way to find it since so many computer deaths... sorry to say.  I bet I could gather it again if I put my mind to it... I am just not near as keen to stay up all night searching for a small point ...not near as keen as I use to be. 

I would not be surprised to see damage like illegal drug use causes but to hear some doctor in good standing put it in print as such now that would surprise me... doubt it will happen. 

If it does it will be a major step in the right direction that will not surprise me at all... I think it is there I think they all know it... I also think nobody will spill the beans.

 

 

Sorry your list disappeared.  I don't blame you for not wanting to compile it again.  I remember being very keen re drug effects back when I was first injured by psych drugs, now it's all I can do to post a relevant link to back up something I am saying. It gets old when it seems the official version of things isn't likely to change.

 

And I generally agree, I think at least some of the doctors must know what the drugs do. Though a fair number will be in denial no doubt. No other way to bring home  a paycheque doing what they do.  Though if I recall there is a neurologist who has spoken out a lot about psych drugs and how baseless "mental illness" diagnoses are.  Dr. Fred Baughman.  Maybe he would know something about the scans. 

[btdt]

 

Some had headaches they did not specify any other illness.  If I have the list saved it is on a disc I have a ton of discs not marked so random searching would be the only way to find it since so many computer deaths... sorry to say.  I bet I could gather it again if I put my mind to it... I am just not near as keen to stay up all night searching for a small point ...not near as keen as I use to be. 

I would not be surprised to see damage like illegal drug use causes but to hear some doctor in good standing put it in print as such now that would surprise me... doubt it will happen. 

If it does it will be a major step in the right direction that will not surprise me at all... I think it is there I think they all know it... I also think nobody will spill the beans.

 

 

Sorry your list disappeared.  I don't blame you for not wanting to compile it again.  I remember being very keen re drug effects back when I was first injured by psych drugs, now it's all I can do to post a relevant link to back up something I am saying. It gets old when it seems the official version of things isn't likely to change.

 

And I generally agree, I think at least some of the doctors must know what the drugs do. Though a fair number will be in denial no doubt. No other way to bring home  a paycheque doing what they do.  Though if I recall there is a neurologist who has spoken out a lot about psych drugs and how baseless "mental illness" diagnoses are.  Dr. Fred Baughman.  Maybe he would know something about the scans. 

 

I don't think the list is actually gone I think it is in storage not easily available but there if I found need for it. 

I think Grace E Jackson would be a good choice for doctors in the know. 

[UnfoldingSky]

I don't think the list is actually gone I think it is in storage not easily available but there if I found need for it. 

I think Grace E Jackson would be a good choice for doctors in the know. 

 

 

Yeah, she seems good too. 

[btdt]

 

Btdt,

 

I have to be pragmatic and know what I may be dealing with so I can plan. I'm almost completely dependent on my husband for daily function (groceries, bill paying, driving on some days when i'm especially disoriented, etc) and have nobody else should something happen to him (he's 10 years older). I'm a high risk for dementia ~ all of the women on maternal side have had some form later in life (vascular, Alzheimers, FTD) and my father has had a few episodes of temporary global amnesia and TIAs. Even with family around, all women on maternal side (grandmother and 3 daughters) have ended up in nursing homes. It's not just a matter of what I would or wouldn't treat, it's being prepared for how and where I would live, having a healthcare proxy, longterm care plans, etc. I don't like to think about it, but it's been my reality even before knowing about MRI findings.

I am happy you have some choices in the matter at least in the planning.  

I guess I am lucky in the respect I have a child who I guess when the time comes will put me wherever.  I am dependent in the same ways as you since withdrawal hit a long time ago. I am sure there will be few choices to make as there is not money to choose there are facilities with severe bed shortages and not much to decide many people here are stored in  hosp till a bed comes avaialbe. I don't like to think about it either and wonder how I would deal when the time came.  

I am hoping to get some years behind me before then.  I am generally well enough to drive most days now but watched a car rust away during withdrawal years I can't afford another car.  I guess we never know what is to come or when it is coming. I keep thinking I am going to heal more and maybe I am just kidding myself. Reading your post now makes me wonder if I am simply in denial either way I still choose to believe I am going to heal there is nothing else to do from my side there are no other choices to think of. 

You have not been off pristiq a very long time some of this you experiencing may well be withdrawal... and some the meds your still on : 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormones.  I tried trazodone once years ago did not like the side effects I am not sure how long you have been on it or why... but disorientation is a side effect.

Trazodone Side Effects - The Road Back

www.theroadback.org/trazodonesideeffects.aspx‎

•  
•  

 

We have listed 186 of the common Trazodone side effects below on this page. ... Edema of Extremities - Abnormal swelling of the body’s tissue caused by the ..... Vertigo - A sensation of dizziness with disorientation and confusion

 

 

 

..yet I do see your point. If you can plan I guess you should .... I am not sure how it works in your country... here only the very wealthy get any say in where they end up. 

 

ps I wish I did not pick the road back as a reference there were many it was accidental I am not recommending them. 

[anonymous]

MRIs are not as cut and dried as I once thought. One doc told me that they are subject to "over reading" or overinterpretation. Different radiologists can look at same scan and interpret as diseased or normal. I also think it might depend on the reason it was ordered. My results said that the micro vascular changes may be result of vasculitis or cerebritis. The indication (billing code) my doctor wrote on MRI order was "cerebritis / vasculitis". I wonder, if there had been no mention of cerebritis by my doctor, if the radiologist would have even mentioned. A neuroradiologist has my scans now. It is an unofficial 2nd opinion arranged through a friend. I hope I'm not sorry I opened up this question again.

 

I was recently told that doctors are outsourcing the reading of MRI scans and other scans. So it may be that your doctor never actually reviews and interprets a scan him or herself. I'd refuse to accept something like that.

 

For a time I was keeping a list on people with these type of issues in the white matter who were in withdrawal I think before I came to this site I had 6 including myself. I also did have a study long ago of the effects of antidepressants on the brain a quick google search says an MRI can detect changes in the brain caused by ssri they use this as a reason to take the drugs.

 

 

Now that is interesting; I'd like to read about those changes that are detected in the brain by an MRI. And I wonder if those MRIs are done after short term exposure or long-term exposure to SSRIs.

[btdt]

 

MRIs are not as cut and dried as I once thought. One doc told me that they are subject to "over reading" or overinterpretation. Different radiologists can look at same scan and interpret as diseased or normal. I also think it might depend on the reason it was ordered. My results said that the micro vascular changes may be result of vasculitis or cerebritis. The indication (billing code) my doctor wrote on MRI order was "cerebritis / vasculitis". I wonder, if there had been no mention of cerebritis by my doctor, if the radiologist would have even mentioned. A neuroradiologist has my scans now. It is an unofficial 2nd opinion arranged through a friend. I hope I'm not sorry I opened up this question again.

 

I was recently told that doctors are outsourcing the reading of MRI scans and other scans. So it may be that your doctor never actually reviews and interprets a scan him or herself. I'd refuse to accept something like that.

 

For a time I was keeping a list on people with these type of issues in the white matter who were in withdrawal I think before I came to this site I had 6 including myself. I also did have a study long ago of the effects of antidepressants on the brain a quick google search says an MRI can detect changes in the brain caused by ssri they use this as a reason to take the drugs.

 

 

Now that is interesting; I'd like to read about those changes that are detected in the brain by an MRI. And I wonder if those MRIs are done after short term exposure or long-term exposure to SSRIs.

 

A lot of what I have found in the past I can't find now.. and it is maddening I started making copies of everything as I expected them to go 404 ... I have been thru one computer every two years ...only  things saved at this point are on flash drives and I am afraid a lot of the good stuff it gone.  I know it sounds like I am crazy but I can't help that I believe there is an effort to keep this information quiet so if you find it copy it to a flash right away.. sound nut I know I can't help that.  It is what it is.

[oskcajga]

Hello all,

 

I'm going to go see a neurologist in PA next week, and my current plan is this:  Basically leave out the fact that I ever took psyciatric medication, and pretend as if the symptoms came on all of a sudden without any medication issues.  I think that this will leave out any bias that the person might have against people who have been diagnosed with mental illness, and he will treat it more authentically as if I had a stroke, or MS or something. 

 

I plan on just handing the doctor a list of the symptoms that I've written out on this forum, and asking him to read it over carefully.

 

Any tests you suggest I request?  Obviously he's going to get me to do an MRI (but I can't use contrast, because I'm hypersensitive to those sorts of things).

 

Do you think this is a good plan?

 

My goal in seeing the neurologist is to RULE OUT anything else.  If it all comes back negative, then I can rest assured that it's just nerve damage from the medication, that will most likely heal over time.

 

Do you think that the neurologist can claim that I'm disabled and take away my ability to drive my vehicle if I describe these symptoms?  I'm worried he'll exercise some sort of authority to take away my freedom if I'm too honest or something.

 

Thanks.

 

 

 

Here's the list of symptoms that I plan on printing out and giving to him:

----

1.  anhedonia - Don't really feel any emotions at all, mostly just a vague tingling and burning and numb feeling in the frontal lobe section of my brain.  When I try to force myself to feel emotions, I just get a vague burning sensation and a feeling that there's just a bunch of cotton in my brain.

 

2.  Depersonalization/derealization - I feel like I'm not 100% connected to my body, and I have a tough time identifying who I was before the symptoms began.  The world seems 2 dimensional, and flat.  I have a tough time recognizing myself in the mirror, and recognizing my family members.  I have a tough time recognizing places I've been all of my life (e.g., the street I grew up on).  The world seems "fake" like I'm looking at it through a pane of glass.  I can still function in this world, have no difficulty driving, interacting with people, but it just doesn't seem 100% real.

 

3.  Trigeminal nerve problems, extreme eye pain, occasional eye spasms, light sensitivity, difficulty reading, tingling and burning all throughout my entire face, and clenching of the jaw.  I whittled away part of my lower teeth due to extreme grinding just from the pressure in my trigeminal nerve pulling my jaws together.  I also have visual snow - there's just a constant amount of snow like from a TV that's not attached to the cable.  When I try to fall asleep and relax, I get fairly severe involuntary twitching of my facial musculature.  My eyes, mouth, and cheeks all move very rapidly without any control.  Simultaneously, there's a soul wrenching pain that hurts very badly.  This pain is not relieved by any medication that I've taken.

 

4.  Tingling and numbness and burning in my limbs, and most parts of my body.  I've seen this symptom described before as parasthesia.  Sometimes the pain is excruiciating, other times it operates as a less powerful sensation.  Most of this tingling and numbness and burning occurs in my hands, feet, and face.  This symptom never relents.  Also - my skin feels like it's covered in wet paper bags, and it's numb to sensation at times.  I feel like my pain tolerance is greatly increased because of this skin anesthesia.

 

5.  Migraine like headaches.

 

6.  Sexual dysfunction - numbness of the genitalia, and numbness feeling in my brain when I try to visualize anything.  It's like I got a lidocane shot into my nerves down there. 

 

7.  Memory issues, difficulty thinking, difficulty visualizing problems, difficulty using my imagination:  This is probably the single symptom that is preventing me from holding down any sort of competitive job.  It feels like I've been lobotomized, that's the best way I can describe it - as if the nerves inside of my frontal lobe and cerebral cortex have been infused with a constant dose of lidocane.  It feels as if my memories still exist, but I can't access them because my nerves are all numbed out.  When I try to remember an important life event, such as a memorable vacation I took with my mother in California, it burns like heck and feels horrible, though I can usually access the memory.     Sometimes I'll suddenly remember an important life event, but it causes a great deal of physical pain - as if trying to access that memory irritates my trigeminal nerve.        

 

8.  Fatigue.  Feels like my brain isn't controlling my movements and my motivation very well.  I have to really force myself to do things.  Sometimes I'm very weak and have a tough time walking, but not always.  I feel as if I'm still half asleep most of the time, even though I'm out in the world functioning somewhat normally and get 8+ hours of sleep.

 

9.  Difficulty sleeping.  When I try to fall asleep, sometimes I'll have loud electrical blasts that flash and feel like my brain has been jolted.  This is very quick and alost feels like I've been struck by an internal strike of lightning.  I eventually get to sleep most of the time, but it's very difficult.  When I wake up, I routinely experience electrical like shockwaves that seem like they're originating in my trigeminal nerve and radiate outward.  I get 8+ hours of sleep, but usually need to wake up at 12PM in order to get the sleep that I need.  My dreams are very faint and disconnected, and I don't remember them as vividly as I used to. 

 

10.  Lhermitte's sign:  Sometimes I'll get a vague sensation that travels down from my head, to my left leg and then sort of settles down.  Feels like insects are crawling all over my body.  I also get the insect like feeling on my face and skull at times.

 

**10.  Hypersensitivity to most medications and some food.  Simple medical treatments, such as local anesthetics, aspirin, xanex, alcohol, etc have profound reactions and make all the above symptoms much worse,  Certain foods, such as chinese food whcih contain MSG< or that are heavy, make many of the above symptoms much worse.  I have to be VERY careful about what I put into my body, because if I take the wrong medication I can be incapacitated for over a week.

[Altostrata]

Interesting approach. Odds are he will spot "anhedonia" and send you to a psychiatrist.

[Barbarannamated]

Follow

[Petunia]

Yes, if I were you I would leave out 1. or just mention the physical aspects of it - the burning sensation when you would normally be feeling emotions.

 

Also the DP/DR, perhaps talk of it more as distorted vision.  When you say things like "The world seems "fake" like I'm looking at it through a pane of glass."  That can very easily be twisted into "Patient believes the world is no longer real, may be losing touch with reality, possible psychosis"

 

Instead, be more specific about your experience, like perhaps "I'm seeing colors less vibrant, I can no longer detect detail and depth in surfaces, I'm finding it difficult to recognize the faces of people I know, it takes a few seconds to remember who they are, it feels like my eyes or brain are not detecting depth and distance the way they used to"

 

Leave out your own interpretations and any metaphors, this may protect you from having your mental/emotional state questioned.

 

Do let us know what happens.

[oskcajga]

Yes, if I were you I would leave out 1. or just mention the physical aspects of it - the burning sensation when you would normally be feeling emotions.

 

Also the DP/DR, perhaps talk of it more as distorted vision.  When you say things like "The world seems "fake" like I'm looking at it through a pane of glass."  That can very easily be twisted into "Patient believes the world is no longer real, may be losing touch with reality, possible psychosis"

 

Instead, be more specific about your experience, like perhaps "I'm seeing colors less vibrant, I can no longer detect detail and depth in surfaces, I'm finding it difficult to recognize the faces of people I know, it takes a few seconds to remember who they are, it feels like my eyes or brain are not detecting depth and distance the way they used to"

 

Leave out your own interpretations and any metaphors, this may protect you from having your mental/emotional state questioned.

 

Do let us know what happens.

 

Thanks for your suggestions.  I've decided to just remove the anhedonia and dp/dr, I figure there are plenty of other issues I'm having that won't be such red flags for "psychosis" or "depression".  I'll definitely take out the metaphors, that's a good suggestion.  Try to stay as objective as possible

[Altostrata]

You're such a fine picture of withdrawal syndrome, this is like a test to see if this neurologist can spot it.

[manymoretodays]

Good luck Osk!  Report back.

 

And oh on the neurologist taking away your license.........I think that is doubtful as most MD's are pretty independent of other agencies with the exception of the ones Social Security provides.  I mean I am disabled(per psych diagnosis) but until I filled out the form for license renewal years ago listing medications at that time and bogus diagnosis nothing happened.  I was not always safe to drive after some of the meds. but no MD ever warned or cautioned me.  Anyway.......I used to get a form from the motor vehicle and licensing bureau that would have to be signed by my shrink as to any limitations as to driving and she always cleared me.  This was all done by mail or fax.   Come to think of it I haven't got a form for awhile now either.

 

Long story short.......extremely unlikely I think.  Don't over think that one.

 

Like on Alto's comment above.  Really cool would be if the neurologist was a savvy and up to date one who says....."Ah, yes.......I have seen this many times before, typical withdrawal syndrome" and then goes on to actually help you heal. 

[brassmonkey]

I would try not to give medical names to any of the symptoms, just describe what you're feeling.  Trying to use the "jargon" of the profession means that you have done a bunch of research and could tip your hand.

[westcoast]

It might be wise to stick with the physical symptoms and not mention the anhedonia or dp. With the push to "treat" "mentally ill" people even if they think they're fine, you could end up in an awkward situation, esp with Dylann Roof's stupid crime this week.

 

What will you answer if asked in person about current or recent drugs prescribed or otherwise?

[WiggleIt]

Print this out instead.  It's my suggestions with all the fluff taken out, so that he does not tell you to go see a psychiatrist:



1.  Visual disturbances, problems with depth perception of objects.  Feels like it might be making you dizzy.  Visual snow/blurriness   

2.  Extreme eye pain, occasional eye spasms, light sensitivity, difficulty reading, tingling and burning all throughout my entire face, and severe clenching of the jaw.  I whittled away part of my lower teeth due to extreme grinding just from the pressure in my trigeminal nerve pulling my jaws together.  When I try to fall asleep and relax, I get fairly severe involuntary twitching of my facial musculature.  My eyes, mouth, and cheeks all move very rapidly without any control.  

3.  Tingling and numbness and burning in my limbs, and most parts of my body.  Sometimes the pain is excruiciating, other times less.  Most of this tingling and numbness and burning occurs in my hands, feet, and face.  This symptom never relents.

4. Skin feels numb to sensation at times.

5.  Migraine like headaches.

6. Numbness of the genitalia

7.  Memory issues, difficulty thinking, difficulty visualizing problems, difficulty using my imagination

8.  Severe fatigue and physical weakness, even though I get 8+ hours of sleep.

9.  Insomnia/difficulty sleeping

10.  Pins and needles on body and sometimes face

**11.  Hypersensitivity to most medications and some food.  Adverse reactions to things I used to be able to eat or drink  Simple medical treatments, such as local anesthetics, aspirin, xanex, alcohol, etc have profound reactions and make all the above symptoms much worse,  Certain foods, such as chinese food whcih contain MSG< or that are heavy, make many of the above symptoms much worse.  I have to be VERY careful about what I put into my body, because if I take the wrong medication I can be incapacitated for over a week.


Remember, you DO NOT have to take any meds he gives you, and you DO NOT have to go to a psych doc if the neurologist tries to make you go to one.
   
Maybe he can do MRI, EEG, and EMG to rule stuff out so that you feel better.  

[Muddles]

I will be following this because I have a neurologist appointment next month. He deals with toxicity issues and I really don't know if I should mention the antidepressants or not.

[oskcajga]

Print this out instead.  It's my suggestions with all the fluff taken out, so that he does not tell you to go see a psychiatrist:

 

 

 

1.  Visual disturbances, problems with depth perception of objects.  Feels like it might be making you dizzy.  Visual snow/blurriness   

 

2.  Extreme eye pain, occasional eye spasms, light sensitivity, difficulty reading, tingling and burning all throughout my entire face, and severe clenching of the jaw.  I whittled away part of my lower teeth due to extreme grinding just from the pressure in my trigeminal nerve pulling my jaws together.  When I try to fall asleep and relax, I get fairly severe involuntary twitching of my facial musculature.  My eyes, mouth, and cheeks all move very rapidly without any control.  

 

3.  Tingling and numbness and burning in my limbs, and most parts of my body.  Sometimes the pain is excruiciating, other times less.  Most of this tingling and numbness and burning occurs in my hands, feet, and face.  This symptom never relents.

 

4. Skin feels numb to sensation at times.

 

5.  Migraine like headaches.

 

6. Numbness of the genitalia

 

7.  Memory issues, difficulty thinking, difficulty visualizing problems, difficulty using my imagination

 

8.  Severe fatigue and physical weakness, even though I get 8+ hours of sleep.

 

9.  Insomnia/difficulty sleeping

 

10.  Pins and needles on body and sometimes face

 

**11.  Hypersensitivity to most medications and some food.  Adverse reactions to things I used to be able to eat or drink  Simple medical treatments, such as local anesthetics, aspirin, xanex, alcohol, etc have profound reactions and make all the above symptoms much worse,  Certain foods, such as chinese food whcih contain MSG< or that are heavy, make many of the above symptoms much worse.  I have to be VERY careful about what I put into my body, because if I take the wrong medication I can be incapacitated for over a week.

 

 

Remember, you DO NOT have to take any meds he gives you, and you DO NOT have to go to a psych doc if the neurologist tries to make you go to one.

   

Maybe he can do MRI, EEG, and EMG to rule stuff out so that you feel better.  

 

Thanks for this, I've edited out my printout sheet similar to what you've written here for me.  I appreciate you taking the time to edit my list of symptoms for me.

 

Appointment is in 10 days, so I'm looking forward to what happens.

 

Thanks everyone.

[WiggleIt]

Keep us posted!

[oskcajga]

Here's my report after seeing the neurologist today.  Long story short:  He thinks that I have either MS or its stress/anxiety related.  He ordered a brain MRI, and an EEG (upon my request) and referred me to a psycotherapist for talk therapy in dealing with my issues.

 

This was an interesting experience, because one of the first things he told me was that I was by far his youngest patient (at 28 years old).  He also said that I was a young and goodlooking guy that should be out having fun, having sex and enjoying life.  He said most of his patients are in their 70s and 80s.  So that made me feel wonderful about my symptoms.  As I indicated in this thread, my strategy was to not mention that my issues were obviously caused my an adverse reaction to antidepressant medication.  I just told him the same story, leaving out the fact that the medication was directly related to my "waves".   This turned out to be the CORRECT way to approach the situation, because he was very dismissive and obviously not aware of any issues with medications.

 

He seemed concerned, and quite perplexed by all of my symptoms.  He asked me things like "did you have any sexual abuse, family abuse, trauma?" - in addition to the usual questions about having a head injury, having a drug abuse problem, etc.

 

I read off most of the symptoms from the list that's in this thread to him.  He seemed to think that my trigemenal nerve issues are NOT trigemninal neurlagia, but something else.  After a while and a bunch of general questions and concerns and small talk, etc, he instructed me to get into a robe so that he could test my pain levels and sensations.

 

He basically pricked me with a little needle to test my nerve sensations, and sure enough there were parts of my body that were less sensitive than others (especially my genitilia and parts of my face).  He had absolutely no idea why my genetilia was more numb than the rest of my body, he said that the nerve just above my genetilia was the same one that goes to the genetilia, and there was no noticeable issue with the pelivs area. 

 

He did a motor test (walking, tip toes, etc etc) and didn't find many issues.

 

He also did a memory test, where he asked me questions.  He said I did pretty good with my memory and knowledge for the most part.

 

So after all of this, he ended up ordering me an MRI with contrast dye (am I going to have a bad reaction to this stuff??????), a prescription for 25mg of a tricyclic antidepressant medication (ummmmm no thank you, screw that - but I was polite and said thank you), and an EEG test.

 

I did ask him if he knew how the tricylcic antidepressant worked, and whether or not there was any withdrawal or dependence, and he said no, no they're not like the benzos where you build tolerance.  He had a lot of negative things to say about benzodiazapines.

 

Ultimately he said, "lets wait for the tests".  Based on my experience, it's either MS, or most likely anxiety and stress related issues".

 

When asked about the issues of hypersensitivity and MRI contrast, the doctor seemed very dismissive about any possible issues.  He also said "if there is an issues, you're here at the hospital, so nothing could go wrong" - to which I thought, there is no where WORSE to be if I have a panic attack or a psycotic reaction to the contrast dye, because they would just pump me full of some sort of sedative, antidepressant, or antipsycotic.

 

so overall, I'm not sure what to think.  I am very hesistant to get the MRI with contrast - I got one back in November (without contrast) and it didn't show anything.  I'll definitely get the EEG.

[Jason]

Very interesting about your experience.

 

I went to a neuro once and handed him a list of things wrong with me. This was three years ago now. He said that it couldn't be possible that my laundry list could be any one thing.

 

Are you concerned you have MS? Or do you really just think this is all withdrawal (as I do)?

 

Hm, another young male on the thread. I'm 33 here and probably shouldn't have to see doctors such as neuro's, either. But I have. And am considering going back (I'm afraid of a brain tumor now).

[manymoretodays]

Glad you updated us.  Frankly......disappointed........I thought/hoped for something great to come out of it.  And pretty sure the numbness gets better and you will get to have a fantastic sex life someday(your Mom talking here).

 

If you know you are sensitive to the dye.........don't do it.  Is he going to use the MRI to rule out MS?........have him use the one without contrast already done if so.   Did he take blood or anything?  Betting you don't have it anyway......

 

So.......if you do see him again we should try and come up with some questions for this Dr. who should by all his background and studies have something acceptably practical to offer.  Or maybe you could risk disclosing to him a little more........most of them don't overly judge or stigmatize for a "depression history" and even in your case a "ADD" history.  But then again.......he might just write it all off as psychiatric again.

 

Anyway......pfffft......I was hoping for better from a neurologist

[Aria]

I'm concerned the neurologist is ordering this procedure without pre-ordering predisone due to your sensitivity?? Last time I was suppose to have procedure (I didn't know contrast dye was going to used) the hospital sent me home because of possible reactions without me being pretreated with predisone.

[InvisibleUnless]

wow, that sounds like a real mixed bag.  the contrast dye would worry me, but if you did not have a reaction at the time, id figure there is less need for alarm by now.  IF your organ functionality is not adequately filtering it out, you may experience toxic effects accumulated over time, but i am not overly familiar with your symptoms and history yet (and reading would be a bit hard at the moment).

 

youre lucky to be able to omit your history---i dont think id be able to not give a physician a tip-off, since im on SSI for my health insurance and mostly just have a medical history related to my psychotropic meds.  it seems to have paid off for you, though his reactions to your questions about TCAs were puzzling.  TCAs and TeCAs often pack a harder side effect profile and more of a discontinuation punch than SSRIs, ive heard (and felt).  in fact, trazodone (a TeCA of sorts) was the most similar medication after-experience i ever had to taking a benzo (temazepam).

 

'diagnosed by exclusion' oftentimes-degenerative neurological diseases and autoimmune symptom clusters seem to be the go-to for doctors puzzling over withdrawal syndrome without factoring in the demonstrated effects of psychotropics.  i dont know enough about that stuff to comment very constructively, but is MS something that can even be definitively tested for?  saying your best bets are MS and another psych diagnosis seems like one step divorced from brushing you off.  not that i think the guys holding back a magical diagnosis, and he did do some worthwhile tests and saw meaningful aberrations...i just fear your getting pigeonholed in a treatment-debilitating way.  it was an interesting experiment and im definitely going to check this thread for updates.

 

also, i really value that early response by Petunia.  i will file that advice away for future reference/potential use.