Newly diagnosed after years of problems

[poppymom23]

Hi, everyone. I wanted to take a moment to introduce myself and share my story. I was diagnosed with FND just a few months ago after years of neurological problems. They first started in 2006 with pain, mostly in my back, then I started having bladder problems, a foot drop on the right, mild muscle spasm in my legs,swallowing issues and vision problems that were initially diagnosed as optic neuritis (a more sensitive test later showed no damage to the optic nerve). After a year of tests and several different neurologist (2 which told me it was psychological), I was given a tentative diagnosis of MS, even though my MRI was negative.

I continued to have frequent exacerbations over the next several years, each responding to the solumedrol treatment. In 2011, my right leg became paralyzed but this time I didn't respond to the solumedrol. I had to start using a wheelchair after that. I had my baclofen pump placed in 2012 to control my spasms which had become out of control. Over the next 7 years, I had an exacerbation about every 6 months, which involved a re-paralysis of mostly my right leg, sometimes my right arm, and occasionally my left arm or left leg. I had several episodes of what we thought were optic neuritis. I was being treated with IVIG during this time, and my flare-ups responded well the IVIG. My MRI remained normal.

In March of 2018, my flare-ups changed. This time, it involved both legs at once. I was hospitalized this time (I usually managed at home), treated with IVIG and was transferred to inpatient rehab to get some strength back in my legs and learn to function with my new disability. Just prior to going home, my paralysis came back (I had gained a little bit of movement in rehab)and it started moving up my body. By that evening, I was paralyzed from the neck down and in the ICU.

I have had a total of 7 such paralysis episodes since then. They occur about every 3 months. The doctor 1st mentioned FND in June last year, but it was only confirmed in November after the last of a few tests in question came back negative.

Now, I am searching for a way to treat this. I am in physical therapy, occasionally I need occupational therapy. I have had cognitive behavior therapy in the past but my therapist discharged me because we ran out of things I needed to talk about. I've gone back a few times as I've struggled to deal with these recurrent paralysis episodes. I attempted to get an appointment at the Mayo clinic, but they won't even see me since I already have a diagnosis. I tried to contact the doctors on this website under "find a provider", but I didn't find any that see my type of problem. My neurologist is great with my migraines, but she doesn't know anything about how to treat this disorder. My PT has been wonderful. She has done a lot of research and is helping me a lot.

Any suggestions on how to treat this disorder we have? How important is CBT if I don't suffer from depression and I have learned to manage my anxiety through the therapy I have already done?

[Junebeatle]

Personally I don’t think CBT does a damn thing to treat FND. You can work on your emotions of dealing with a chronic illness, but as far as actual symptom reduction no.

I had success with Transcranial Magnetic Stimulation treating the motor cortex, left & right frontal lobe. A plant, based keto diet really helped a lot of the muscle spasms for me (there’s research FND is excessive glutamate in areas in the brain, which is why I think keto helps).

I also take a lot of immune/detox supplements (Some of which were deficiencies I had) Vitamin D, Acetyl-l-carnitine, liposomal Vit C, Salmon oil w/ curcumin, liposomal glutathione (only absorbed form), propolis spray, Saffron, Beyond Balance detox binder, SBI protect from Orthomolecular.

This journey is really so individual with what helps. I highly recommend the TMS treatment as it’s showing success in the majority of brain abnormalities. A keto diet couldn’t hurt to trial for 3 months or so to see if any improvement (I use carb manager app to make it easier to track macros) Good luck! I hope you find something to ease your suffering

[poppymom23 in reply to Junebeatle]

I have actually been on a keto diet for almost 3 years. I lost 100 pounds on a keto diet. I eat a lower fat version of a keto diet than most people do. I eat mostly lean protein, and lots of vegetables. In the summer, I eat a small amount of berries too.

[Junebeatle in reply to poppymom23]

What about TMS, they offer that in Austin, TX then you wouldn’t be out travel expenses. It made a world of difference in my symptoms, just find a qualified doctor who performs it & not a huge clinic that churns people through. They are using if for a lot of different treatments, MS, Parkinson’s, Autism, etc.

I have more of a remit/flare pattern of FND, but it did get unbearable in 2018 after years of remission. The challenge that you will find with doctors in “treating” you is that they really don’t know enough about it and most think “psychological” and walk away from getting involved. I hope you find something that works for you I’m glad you have a PT advocating for you.

If IVIG helps it sounds like autoimmune or “infection” type of illness. Has auto-immunity been ruled out (other than MS)?

[poppymom23 in reply to Junebeatle]

I will look into TMS. I have more of a relapsing-progressive type. I have definite relapses, and I improve some between episodes but never return back to baseline. I relearn to walk, but I can't walk very far and my legs stay weak. When my neuro thought I had MS, this is the type she thought I had.

The IVIG helped for a while when I was having single limb paralysis, although it didn't stop it all together. The IVIG also helps my motor function return much faster, although, again, it does return without it, so now they won't treat me with it when I have these ascending paralysis episodes. They decided to stop the IVIG last March after I had an ascending paralysis episode only 2 days after my IVIG infusion. It became clear then that the IVIG was not doing anything to prevent these any longer.

I have a bunch of questions I have to ask my neuro when I see her next. One of the big ones is I just learned that there are positive test for this disorder, it is not just a disorder of exclusion. No one has ever done a test for the Hoover sign. The other things don't apply to me because I don't have non-epileptic seizures and I don't have a tremor. They gave me this diagnosis because they can't find anything else. I do have quite a few abnormal tests and some abnormalities on my MRI and CT scans, they just don't really go together to create anything concrete, nor do they explain my extreme symptoms.

[NicolaMac in reply to Junebeatle]

I personally had wonderful recovery doing a detox with raw eating and herbs.Have since gone down hill a bit as due to some traumatic events i started smoking again and eating poorly.So now at the stage of doing it all again.There are many types of Detox available but i found Dr Robert Morse N.D,s programme to be the top of the mountain. Wish you well on your road to recovery

[Notecards]

I don’t know where you live, however, I am being treated at Shirley Ryan AbilityLab in Chicago. It is a wonderful institution that treats FND with a comprehensive approach. People come from all over the world to be treated here. Luckily for me, I live in Chicago. Where do you live? Good luck.

[poppymom23 in reply to Notecards]

I live in Austin, TX. With having such major medical centers in Houston and Dallas, I thought I would be able to find someone to treat me there. I found a doctor in Houston who treats FND, but after he received my medical records, his office called me and cancelled my appointment. The doctor said my case was too complicated and he wanted me to see another doctor. He gave me a referral to another doctor, but that doctor didn't see FND patients at all, just MS patient. After that I got my Mayo clinic appointment, but then that was cancelled too. I am willing to travel anywhere in the US if I need to. I did find a PT who is passionate about FND through FNDHope.org but he is in Colorado. My PT is going to contact him to see if she can get some advice on how to treat me through PT. My PT is also doing as much research as she can to help me with this. She has been my best advocate, besides myself. I have loved my neuro since I started seeing her in 2007, but I just feel like this is more than she can handle. She is great with my migraines and she did a great job when she thought I had MS, but she doesn't know anything about FND and doesn't seem to care to do any research to find out anything about it.