Confusion, hallucinations, headaches, severe mental fatigue

[crypt0cu1t]

So i went to see an Autoimmune Encephalitis specialist who told me that I dont have AE, but I do have other autoimmune issues and ordered an MRI and an EMG because of my AChR antibodies and other inflammatory markers.

To make matters even worse, I tested POSITIVE on the mayo Autoimmune Encephalitis Panel for TWO autoantobodies known to be associated with it but yet she says I dont have it? How can i be positive for two antibodies that cause it yet not have it?

I'm feeling so frustrated because all I want is to get treated for autoimmunity but no doctors are willing to even hear me out (except for Dr. Chheda) right now I'm on LDN and Plaquenil which is probably helping, but I feel that i wont improve without immunotherapy and I know that autoimmune encephalitis gets bad FAST.

IVIG is taking forever to get approved and Its frustrating me waiting because I dont even know if it will be strong enough to work... I'm just feeling so very hopeless atm as my visual distortion, hallucinations, fatigue l, headaches, stiff neck and other neuro issues are getting worse quickly.

@Gingergrrl @Learner1 @Jesse2233

 

[StarChild56]

I am sorry I can't be of much help other than suggestion for the stiff neck/headaches. I have a very painful and stiff neck and have migraines as well as headaches. The only way I'm able to get through this is with an infrared heating pad which I use basically all day long (and migraine meds for the migraine).

I'm sorry you are going through so much and hope you get approved for IVIG soon and perhaps find something to help you in the meantime.

 

[Lisa108]

I tested POSITIVE on the mayo Autoimmune Encephalitis Panel for TWO autoantobodies known to be associated with it but yet she says I dont have it?

Hi @crypt0cu1t , can you contact her (via email, phone) to ask her this?
I would suspect that you tested positive on two autoantibodies that are not that specific for AE, but for another disease (and she wants to secure her diagnosis with the MRI and EMG)?

And if you're still in doubt, you could ask another specialist for a second opinion?

However, wishing you lots of success to get a diagnosis soon, and would love it to be AE, as this is said to be reversible with IVIG...

 

[crypt0cu1t]

Hi @crypt0cu1t , can you contact her (via email, phone) to ask her this?
I would suspect that you tested positive on two autoantibodies that are not that specific for AE, but for another disease (and she wants to secure her diagnosis with the MRI and EMG)?

And if you're still in doubt, you could ask another specialist for a second opinion?

However, wishing you lots of success to get a diagnosis soon, and would love it to be AE, as this is said to be reversible with IVIG...

Well, the two antibodies were AChR Binding and AChR Ganglionic, so maybe thats why? But my symptoms resemble autoimmune encephalitis almost 100%
I'm waiting for an appointment with Dr. Gelfand at UCSF who is a neuroimmune specialist that runs the Autoimmune Encephalitis clinic at UCSF

I dont know anyone else with ME who has hallucinations, seizures and distorted vision.

 

[crypt0cu1t]

I am sorry I can't be of much help other than suggestion for the stiff neck/headaches. I have a very painful and stiff neck and have migraines as well as headaches. The only way I'm able to get through this is with an infrared heating pad which I use basically all day long (and migraine meds for the migraine).

I'm sorry you are going through so much and hope you get approved for IVIG soon and perhaps find something to help you in the meantime.

Thanks for the reply @Forçe e Honra I appreciate you always taking the time to give me advice and make me feel better about my situation!

I hope IVIG works for me too

 

[Lisa108]

I'm no expert and this is just me guessing, but maybe she suspects myasthenia gravis. MG can be associated with epilepsy (though this is rare, says my quick google search).

 

[Dechi]

Well, the two antibodies were AChR Binding and AChR Ganglionic, so maybe thats why? But my symptoms resemble autoimmune encephalitis almost 100%
I'm waiting for an appointment with Dr. Gelfand at UCSF who is a neuroimmune specialist that runs the Autoimmune Encephalitis clinic at UCSF

I dont know anyone else with ME who has hallucinations, seizures and distorted vision.

I’ve had hallucinations and I’ve heard of other people on PR who had them. One person had them often and severe enough to stop driving altogether (can’t remember who though). I’ve had at least 3 episodes of auditory hallucinations and 1 visual hallucination. The day the visual hallucination happened, I had an appointment with Dr Hyde and he said it was my brain making up images. It seems it’s not uncommon in people with ME.

Also, your antibodies look like Myasthenia Gravis antibodies. Check it out.

 

[Gingergrrl]

IVIG is taking forever to get approved and Its frustrating me waiting because I dont even know if it will be strong enough to work... I'm just feeling so very hopeless atm as my visual distortion, hallucinations, fatigue l, headaches, stiff neck and other neuro issues are getting worse quickly.

I am so sorry it is taking so long and it took a very long time for me to get the first IVIG approval from my insurance (back in July 2016). Please do not give up and you have a rock-solid case for high dose IVIG in my opinion. Maybe Dr. Chheda wants to wait for all of your consults to be done first (or is it purely your insurance that is refusing)? Do you still have a LEMS diagnosis?

I'm waiting for an appointment with Dr. Gelfand at UCSF who is a neuroimmune specialist that runs the Autoimmune Encephalitis clinic at UCSF

I have heard excellent things about Dr. Gelfand and UCSF but have never seen him myself.

I'm no expert and this is just me guessing, but maybe she suspects myasthenia gravis.

I think it is very possible that you could have MG with the autoantibodies that you test positive for (separate from or in addition to some type of AE). I know it is incredibly difficult but hopefully all of this testing and various appts will lead to approval of IVIG (and other treatments). It did in my case but it took a very long time in the beginning to get it all approved.

 

[crypt0cu1t]

I am so sorry it is taking so long and it took a very long time for me to get the first IVIG approval from my insurance (back in July 2016). Please do not give up and you have a rock-solid case for high dose IVIG in my opinion. Maybe Dr. Chheda wants to wait for all of your consults to be done first (or is it purely your insurance that is refusing)? Do you still have a LEMS diagnosis?



I have heard excellent things about Dr. Gelfand and UCSF but have never seen him myself.



I think it is very possible that you could have MG with the autoantibodies that you test positive for (separate from or in addition to some type of AE). I know it is incredibly difficult but hopefully all of this testing and various appts will lead to approval of IVIG (and other treatments). It did in my case but it took a very long time in the beginning to get it all approved.

I just feel so hopeless right now and the way my illness fluctuates from 80% bedridden to me being almost normal within a matter of weeks is driving me insane!

I honestly dont think I can handle another severe flare up like this and i still dont even know if my case is autoimmune or not.... Im getting scared that I have a prion disease or something.

I dont have a diagnosis of anything anymore because dr chheda says I have so many autoantibodies to different diseases that ai dont fit under one diagnosis

 

[StarChild56]

I am so sorry, it is so frustrating when you are suffering so much and all these different things are testing as abnormal yet there is nothing right now that you can DO to just fix it...it is like having a ginormous jigsaw puzzle and slowly getting one piece here, one piece there...

I hope you can hold on, keep some hope and get through to the other side because when enough puzzle pieces fall into place (and I include insurance approvals in this, cause often we are waiting for approval for meds) you can find enough relief to see the light at the end of the tunnel. At least, that is what I tell myself

Sending positive energy your way.

 

[crypt0cu1t]

I am so sorry, it is so frustrating when you are suffering so much and all these different things are testing as abnormal yet there is nothing right now that you can DO to just fix it...it is like having a ginormous jigsaw puzzle and slowly getting one piece here, one piece there...

I hope you can hold on, keep some hope and get through to the other side because when enough puzzle pieces fall into place (and I include insurance approvals in this, cause often we are waiting for approval for meds) you can find enough relief to see the light at the end of the tunnel. At least, that is what I tell myself

Sending positive energy your way.

The fact that i do pull out of it to about 70-80% functionality give me hope that whatever this is can be reversed, but im just struggling.... I dont want to give up but seeing everything pass me by is killing me especially since my gf left me..

 

[StarChild56]

The fact that i do pull out of it to about 70-80% functionality give me hope that whatever this is can be reversed, but im just struggling.... I dont want to give up but seeing everything pass me by is killing me especially since my gf left me..

Oh that is so understandable, how you feel my goodness. I'm sorry, so sorry that is awful. On top of everything else you have to deal with. Hugs. I wish I could help in some way. Sending you positive and healing vibes.

 

[Lisa108]

I read a bit about myasthenia gravis last night and in one article it said it were the best treatable autoimmune disease. Plus it can be treated with IVIG. Having more autoantibodies seems to be the case for some of us. The panel from Celltrend is now 11 autoantibodies if I remember correctly and I read people sharing they have tested positive on quite a lot of them. Plus some of the Mayo panel or other tests.

Maybe in your case it will work out to your advantage to have many autoantibodies as that might make it easier to have IVIG (or plasmapharesis or immunoadsorption or what all these techniques are called) approved.

I agree it is tough to have to fight so much, when we are that ill. But you seem to have some great experts really looking into your case. They will come to their conclusions soon.

 

[crypt0cu1t]

I read a bit about myasthenia gravis last night and in one article it said it were the best treatable autoimmune disease. Plus it can be treated with IVIG. Having more autoantibodies seems to be the case for some of us. The panel from Celltrend is now 11 autoantibodies if I remember correctly and I read people sharing they have tested positive on quite a lot of them. Plus some of the Mayo panel or other tests.

Maybe in your case it will work out to your advantage to have many autoantibodies as that might make it easier to have IVIG (or plasmapharesis or immunoadsorption or what all these techniques are called) approved.

I agree it is tough to have to fight so much, when we are that ill. But you seem to have some great experts really looking into your case. They will come to their conclusions soon.

The frustrating thing is that my symptoms are more consistent with autoimmune encephalitis and I dont fit the profile for MG (according to 2 3 different doctors)

 

[crypt0cu1t]

I read a bit about myasthenia gravis last night and in one article it said it were the best treatable autoimmune disease. Plus it can be treated with IVIG. Having more autoantibodies seems to be the case for some of us. The panel from Celltrend is now 11 autoantibodies if I remember correctly and I read people sharing they have tested positive on quite a lot of them. Plus some of the Mayo panel or other tests.

Maybe in your case it will work out to your advantage to have many autoantibodies as that might make it easier to have IVIG (or plasmapharesis or immunoadsorption or what all these techniques are called) approved.

I agree it is tough to have to fight so much, when we are that ill. But you seem to have some great experts really looking into your case. They will come to their conclusions soon.

Do you think my case does sound autoimmune?

 

[Gingergrrl]

I honestly dont think I can handle another severe flare up like this and i still dont even know if my case is autoimmune or not.... Im getting scared that I have a prion disease or something.

I dont have a diagnosis of anything anymore because dr chheda says I have so many autoantibodies to different diseases that ai dont fit under one diagnosis

You have very clear-cut autoimmunity (like I did) except with different autoantibodies. If Dr. Chheda said that you have so many autoantibodies that it is hard to tell which diagnosis you have, I don't see any scenario where your case is not autoimmune (even if there is not a clear-cut disease label yet). Why do you think you have prion disease?

In addition, if there is proven autoimmunity like in your case (and in my case), high dose IVIG can help even when the diagnosis is unclear. My doctor is now certain that I have an atypical form of LEMS but regardless of what label I have, the treatment worked for me and I believe it will work for you. Please keep fighting.

I dont want to give up but seeing everything pass me by is killing me especially since my gf left me..

I am so sorry to hear about your gf leaving and that is brutal on top of dealing with the illness. When my husband and I separated, I was still extremely ill and I literally had no idea how I was going to manage living by myself while continuing my treatments and taking care of my dog. Luckily my family and my best friend stepped up and helped me at that time (end of 2016) or I don't know if I would have made it through. Are your family or friends helping you?

Maybe in your case it will work out to your advantage to have many autoantibodies as that might make it easier to have IVIG (or plasmapharesis or immunoadsorption or what all these techniques are called) approved.

It was definitely helpful in my case for IVIG and Rituximab (not for PP or IA which is almost never done here and was not recommended in my case, but every case is different).

The frustrating thing is that my symptoms are more consistent with autoimmune encephalitis and I dont fit the profile for MG (according to 2 3 different doctors)

It is confusing why your symptoms match with AE but your autoantibodies (so far) match with MG but regardless you have several autoantibodies that can be treated. There are atypical cases of everything and we are not widgets (to quote @Learner1).

Do you think my case does sound autoimmune?

Yes, a million percent.

 

[crypt0cu1t]

You have very clear-cut autoimmunity (like I did) except with different autoantibodies. If Dr. Chheda said that you have so many autoantibodies that it is hard to tell which diagnosis you have, I don't see any scenario where your case is not autoimmune (even if there is not a clear-cut disease label yet). Why do you think you have prion disease?

In addition, if there is proven autoimmunity like in your case (and in my case), high dose IVIG can help even when the diagnosis is unclear. My doctor is now certain that I have an atypical form of LEMS but regardless of what label I have, the treatment worked for me and I believe it will work for you. Please keep fighting.



I am so sorry to hear about your gf leaving and that is brutal on top of dealing with the illness. When my husband and I separated, I was still extremely ill and I literally had no idea how I was going to manage living by myself while continuing my treatments and taking care of my dog. Luckily my family and my best friend stepped up and helped me at that time (end of 2016) or I don't know if I would have made it through. Are your family or friends helping you?



It was definitely helpful in my case for IVIG and Rituximab (not for PP or IA which is almost never done here and was not recommended in my case, but every case is different).



It is confusing why your symptoms match with AE but your autoantibodies (so far) match with MG but regardless you have several autoantibodies that can be treated. There are atypical cases of everything and we are not widgets (to quote @Learner1).



Yes, a million percent.

Well, so far I have onky tested positive for 3 autoantibodies AChR Binding, AChR Ganglionic and Salivary Protein 1. My ESR, CRP, WBC and protein levels are still very elevated and have been since February.

I feel like i may have a prion disease because of the relapsing remitting nature and the strange visual issues and difficulty tqlking, but i guess any kind of inflammation in the brain could do it.

I just feel so scared because as of now I am depending on dr. Chheda and dr. gelfand to get me through this.

 

[Hip]

@crypt0cu1t, you might like to look at this study which lists the diagnostic criteria for various types of autoimmune encephalitis (see panels 1 to 7):

A clinical approach to diagnosis of autoimmune encephalitis

Those 7 panels are also listed more succinctly here.

I am guessing that possibly if your doctor does not think you have autoimmune encephalitis, it may be that you do not match these criteria.

Are you able to check these 7 criteria yourself, and see if you match any of them?

 

[Gingergrrl]

@crypt0cu1t I can't remember, have you talked to @SK2018 about your symptoms and autoantibodies?

 

[crypt0cu1t]

@crypt0cu1t I can't remember, have you talked to @SK2018 about your symptoms and autoantibodies?

Yes, he says the only surefire way of know is to di a csf test and even then It could be antibody negative.