Confusion, hallucinations, headaches, severe mental fatigue

[crypt0cu1t]

@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?

The problem is that I have not had a spinal tap or extensive neuroimaging yet.

 

[Gingergrrl]

The problem is that I have not had a spinal tap or extensive neuroimaging yet.

Will you be having those things in the future? I guess you need to wait and see what Dr. Gelfand recommends. I think you are in good hands with him and Dr. Chheda and the waiting is the hardest part.

I know we have different autoantibodies but I never had a spinal tap and the IVIG and Rituximab were intensely helpful. But maybe it is different with autoantibodies that attack the brain vs. the muscles and autonomic system (I am completely guessing and don't quote me on anything)!

 

[crypt0cu1t]

Will you be having those things in the future? I guess you need to wait and see what Dr. Gelfand recommends. I think you are in good hands with him and Dr. Chheda and the waiting is the hardest part.

I know we have different autoantibodies but I never had a spinal tap and the IVIG and Rituximab were intensely helpful. But maybe it is different with autoantibodies that attack the brain vs. the muscles and autonomic system (I am completely guessing and don't quote me on anything)!

Don't get me wrong, Dr. Chheda hqs done everything in her power to help me and get me treatment, but the waiting is what's killing me here.

I think its the same process, but we just dont know if my autoimmunity is B celk or T cell mediated which means different treatment options than the basic IVIG, RTX and PLX.

So you have heard of Dr. Gelfand before? I heard he is the absolute best to see for neuroinflammatory/autoimmune issues

 

[Gingergrrl]

I think its the same process, but we just dont know if my autoimmunity is B celk or T cell mediated which means different treatment options than the basic IVIG, RTX and PLX.

This is where I get confused b/c my doctor said my autoantibodies were B-cell mediated but I really do not know how this was determined.

So you have heard of Dr. Gelfand before? I heard he is the absolute best to see for neuroinflammatory/autoimmune issues

I almost pursued seeing him and wish I could remember who told me about him. I had a very bad experience with a different Neuro in early 2016 (who found the Calcium Channel and anti GAD65 autoantibodies on Mayo panels, diagnosed me with "Significant POTS", found abnormalities on TTT, QSART, etc, and an abnormality on EMG but then did this sudden flip and labeled everything psychosomatic b/c he did not believe in MCAS (which I also have). It was insane and in retrospect, I think he was afraid to treat me b/c he felt I was too high of an anaphylaxis risk but I won't bore you with the story.

I seriously considered Dr. Gelfand but at that time I was way too sick to do a third trip up to No. CA and so much time was being wasted that Dr. K (who works with Dr. Chheda) felt that we needed to proceed without a Neuro. I had been getting progressively worse for 3+ years at that point and my ability to breath was really bad due to neuromuscular weakness of lungs and diaphragm. We thought we'd have a stronger case for high dose IVIG with my insurance with a Neuro on board but in the end, it did not matter and we got it anyway.

But I know each case is different and if they want you to have a lumbar puncture and tests to determine if B-cell or T-cell mediated, this is very different than my case (they wanted me to have a high resolution lung cat scan, pulmonary function testing, EMG and NCT, Sniff Test of Diaphragm, and I forget what else).

 

[crypt0cu1t]

This is where I get confused b/c my doctor said my autoantibodies were B-cell mediated but I really do not know how this was determined.



I almost pursued seeing him and wish I could remember who told me about him. I had a very bad experience with a different Neuro in early 2016 (who found the Calcium Channel and anti GAD65 autoantibodies on Mayo panels, diagnosed me with "Significant POTS", found abnormalities on TTT, QSART, etc, and an abnormality on EMG but then did this sudden flip and labeled everything psychosomatic b/c he did not believe in MCAS (which I also have). It was insane and in retrospect, I think he was afraid to treat me b/c he felt I was too high of an anaphylaxis risk but I won't bore you with the story.

I seriously considered Dr. Gelfand but at that time I was way too sick to do a third trip up to No. CA and so much time was being wasted that Dr. K (who works with Dr. Chheda) felt that we needed to proceed without a Neuro. I had been getting progressively worse for 3+ years at that point and my ability to breath was really bad due to neuromuscular weakness of lungs and diaphragm. We thought we'd have a stronger case for high dose IVIG with my insurance with a Neuro on board but in the end, it did not matter and we got it anyway.

But I know each case is different and if they want you to have a lumbar puncture and tests to determine if B-cell or T-cell mediated, this is very different than my case (they wanted me to have a high resolution lung cat scan, pulmonary function testing, EMG and NCT, Sniff Test of Diaphragm, and I forget what else).

Well, Dr. Chheda believes mine is B cell mediated, but I just don't feel completely convinced and we will never know until I trial immunotherapies. which is taking FOREVER grrr.

I am getting an EMG and a high resolution MRI at Stanford, so im just praying something shows up to further my case for IVIG.

Im going to call Dr. Gelfands office tuesday and see if he would even be willing to trial immunotherapy fir me

 

[crypt0cu1t]

@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?

Funnily enough, the Doctor I am waiting to see is actually the one of the docs who wrote that article lol

 

[Gingergrrl]

Well, Dr. Chheda believes mine is B cell mediated, but I just don't feel completely convinced and we will never know until I trial immunotherapies. which is taking FOREVER grrr.

If Dr. Chheda feels that yours is B-cell mediated, can you remind me why you think it might not be? I wish I understood this part better. Also, is it taking forever b/c she is waiting for you to see Dr. Gelfand first or b/c insurance has denied it and you are appealing?

I am getting an EMG and a high resolution MRI at Stanford, so im just praying something shows up to further my case for IVIG.

This sounds very promising (the EMG and high res MRI at Stanford). When are you doing this again?

Im going to call Dr. Gelfands office tuesday and see if he would even be willing to trial immunotherapy fir me

Is this before he has met you as a new patient? My guess is that it is unlikely that he would even comment re: IVIG or other treatments before he meets you and assesses you in person.

Funnily enough, the Doctor I am waiting to see is actually the one of the docs who wrote that article lol

To me that is a VERY good sign

 

[crypt0cu1t]

If Dr. Chheda feels that yours is B-cell mediated, can you remind me why you think it might not be? I wish I understood this part better. Also, is it taking forever b/c she is waiting for you to see Dr. Gelfand first or b/c insurance has denied it and you are appealing?



This sounds very promising (the EMG and high res MRI at Stanford). When are you doing this again?



Is this before he has met you as a new patient? My guess is that it is unlikely that he would even comment re: IVIG or other treatments before he meets you and assesses you in person.



To me that is a VERY good sign

I just tend to compare my case to the most severe ones and think about the possibility of it being the worst case scenario I guess.

The process is taking lomg because we are trying to get it approved. It has been denied once, but she said Rituximab is something we also may look into for me.

I have never net Dr. Gelfand but I have very high hopes for him and I'm hoping he doesnt brush me off like the Stanford Epilepsy center did.

 

[Gingergrrl]

I just tend to compare my case to the most severe ones and think about the possibility of it being the worst case scenario I guess.

I did the exact same thing and really understand.

The process is taking lomg because we are trying to get it approved.

I was denied the first two appeals for IVIG (in 2016) and then approved on the third try for only ONE infusion. After that I was approved for three more. And then finally, I was approved for longer intervals at a time. It was like a full-time job dealing with insurance but do not lose faith.

I have never net Dr. Gelfand but I have very high hopes for him and I'm hoping he doesnt brush me off like the Stanford Epilepsy center did.

I do not believe that he will. My worst experience with a doctor (which I wrote a little about above) was with a Neuro at Stanford. He wrote me off but luckily my other doctors thought he was full of BS (literally) and we got my treatments approved. Please do not lose hope.

 

[Martial]

The problem is that I have not had a spinal tap or extensive neuroimaging yet.

Hey man, just wanted to ask since it hasn't been mentioned yet. But have you been checked for Lyme disease? A lot of my neuro lyme symptoms were similar to some of what you mentioned. I know you are saying you had certain antibodies as well though. Anyways in case it hasn't been something you looked into before, it might be worth looking into as a potential possibility that could be treated.

 

[keepontruckin]

I agree Lyme disease should be considered when there are neuro symptoms. In particular, b. garinii (European lyme).

Sorry i have not read this whole thread. But thought i would mention I notice IVIG in synthetic form is being developed.

https://www.sciencedaily.com/releases/2017/07/170706113223.htm


https://www.news-medical.net/news/2...rview-with-Professor-Richard-Pleass-LSTM.aspx

 

[crypt0cu1t]

Hey man, just wanted to ask since it hasn't been mentioned yet. But have you been checked for Lyme disease? A lot of my neuro lyme symptoms were similar to some of what you mentioned. I know you are saying you had certain antibodies as well though. Anyways in case it hasn't been something you looked into before, it might be worth looking into as a potential possibility that could be treated.

I have actually been tested for Lyme & co through 3 different labs (Quest, Igenex, Galaxy) and was negative for all bands every time.

 

[Lisa108]

@crypt0cu1t I almost envy your situation. You are seen by very knowledgeable experts who are interested in solving the puzzle, they odered these great tests for you, and you already have some findings that are admittedly associated with disease(s).

The road to treatment may be rough, as it takes so much time to have all these appointments and until everything is approved. Uncertainty is a huge part in chronic illness: Will I get the right treatment? Will it help? When? Will I get my life back?
But I honestly think that you are a lucky one and things will work out for you in the near future!

I hope your appointment on tuesday will bring more good info, and that the 3 experts will combine their knowledge. Maybe you'll not get a 'name tag' on your disease, maybe it is a combination of different diseases (autoimmune diseases seem to like company).
But I wouldn't be surprised if you'll write another success story like @Gingergrrl !

Best wishes and a (metric) ton of patience!

 

[crypt0cu1t]

@crypt0cu1t I almost envy your situation. You are seen by very knowledgeable experts who are interested in solving the puzzle, they odered these great tests for you, and you already have some findings that are admittedly associated with disease(s).

The road to treatment may be rough, as it takes so much time to have all these appointments and until everything is approved. Uncertainty is a huge part in chronic illness: Will I get the right treatment? Will it help? When? Will I get my life back?
But I honestly think that you are a lucky one and things will work out for you in the near future!

I hope your appointment on tuesday will bring more good info, and that the 3 experts will combine their knowledge. Maybe you'll not get a 'name tag' on your disease, maybe it is a combination of different diseases (autoimmune diseases seem to like company).
But I wouldn't be surprised if you'll write another success story like @Gingergrrl !

Best wishes and a (metric) ton of patience!

Well I really only have one expert seeing me currently while I wait for Dr. Gelfand in October.

The frustration is not knowing if the treatments will even work..

I really do hope that I recover... The fact that my illness almost completely remits shows me that this damage isnt permenant.

 

[Lisa108]

Well I really only have one expert seeing me currently while I wait for Dr. Gelfand in October.

Sorry, I misread your post. I thought you were seeing Dr. Gelfand on Tuesday. But with your AE expert (who ordered the mri and emg) and Dr. Chheda, this is still 3, right? At least if you do have the results you could ask all of them for their opinion (or even ask to get in touch with each other).

The fact that my illness almost completely remits shows me that this damage isnt permenant.

Very very rarely I have a short time (an hour or so) of feeling quite 'normal' again. So I too think that a return should be possible...

 

[crypt0cu1t]

Sorry, I misread your post. I thought you were seeing Dr. Gelfand on Tuesday. But with your AE expert (who ordered the mri and emg) and Dr. Chheda, this is still 3, right? At least if you do have the results you could ask all of them for their opinion (or even ask to get in touch with each other).


Very very rarely I have a short time (an hour or so) of feeling quite 'normal' again. So I too think that a return should be possible...

No worries, the AE expert I saw at Stanford admitted that i have something "Very concerning and serious" but she didnt know what it was.

I just wish i could even trial Prednisone to just alleviate some symptoms while I wait because my brain honestly feels fried and damaged.

 

[Lisa108]

I convinced my GP in December 2017 to try a "cortisone pulse therapy" (don't know if this is the right term - I took 30 mg prednisone for 3 days and then step by step lowered the dosis to 0 on day 11). I was fine from day 2-4. Then all of my symptoms came slowly back.

I had no problem with the withdrawal, but this can be a serious problem, as others have already mentioned.
My GP didn't want to prescribe prednisone further, as I only responded to the high dosis and he didn't felt this was safe for long term. But oh the Energy! And being painfree...

But I think in your case it would be better to at least wait until after the mri and emg are taken, before you'd try prednisone or anything else (to not falsify the results). Do you have a date for these yet?

 

[crypt0cu1t]

I convinced my GP in December 2017 to try a "cortisone pulse therapy" (don't know if this is the right term - I took 30 mg prednisone for 3 days and then step by step lowered the dosis to 0 on day 11). I was fine from day 2-4. Then all of my symptoms came slowly back.

I had no problem with the withdrawal, but this can be a serious problem, as others have already mentioned.
My GP didn't want to prescribe prednisone further, as I only responded to the high dosis and he didn't felt this was safe for long term. But oh the Energy! And being painfree...

But I think in your case it would be better to at least wait until after the mri and emg are taken, before you'd try prednisone or anything else (to not falsify the results). Do you have a date for these yet?

I don't have a date as of yet, but Im sure it will be soon. Would taking steroids create false results?

 

[Lisa108]

Would taking steroids create false results?

Yes, I think so. Steroids are antiinflammatory. So all the signs of inflammation would be diminished. For example: in the mri this could mean that a swelling (oedema) could be reduced or vanished, that centres of inflammation (like in MS) would not show up. For the emg it could mean that steroids improve the 'nerve conduction velocity' (? right term?). Etc.

So your picture would be way better than it 'really' (without prednisone) is.

I'd also consider that IF your diagnosis is MG, then steroids would have to be started very low and slowly build up, as high initial dosis can bring on a significant detoriation.

I don't have a date as of yet, but Im sure it will be soon.

Then all you can do now is relax. I'm keeping my fingers crossed for you!

 

[crypt0cu1t]

Yes, I think so. Steroids are antiinflammatory. So all the signs of inflammation would be diminished. For example: in the mri this could mean that a swelling (oedema) could be reduced or vanished, that centres of inflammation (like in MS) would not show up. For the emg it could mean that steroids improve the 'nerve conduction velocity' (? right term?). Etc.

So your picture would be way better than it 'really' (without prednisone) is.

I'd also consider that IF your diagnosis is MG, then steroids would have to be started very low and slowly build up, as high initial dosis can bring on a significant detoriation.



Then all you can do now is relax. I'm keeping my fingers crossed for you!

Well, I have had an MRI before and it showed no signs of inflammation, but im hoping maybe this hugh resolution one at Stanford can pick something up lol

Thank you for the advice and informatiom btw!

Since prednisone helped you, did you test positive for any autoantibodies or inflammatory markers?