Alternatives to FND diagnosis - maybe helpful???

[CarolineAnne]

Hello Everyone,

I am writing this in case it helps anyone. I was diagnosed with auto immune Hypothyroidism in 2004. Since then I am unable to tolerate the standard medication, thyroxine. I have deteriorated with progressive muscle weakness and stroke like/ paralysis episodes on my left side. I was recently diagnosed with FND by a Neuro which I do not believe I have.

During my years of research I have read countless thyroid patient stories whom many suffer the same kind of symptoms of FND. These same symptoms disappear when the patients are fully optimised on meds. From reading, it seems that adrenal fatigue from long term illness or stress can result in these symptoms. Just for your information, if you have had your thyroid tested and told by your doctor that the results are normal you can still have Hypothyroidism as the tests are controversial.

Also, since being diagnosed with FND I have been reading and researching and came across Hypo and Hyper- kalemic Periodic Paralysis. It seems to have similar symptoms and many patients were misdiagnosed with Conversion disorder/FND beforehand.

One last thing, my Endocrinologist has suggested I could be suffering from Hashimotos Encephalopathy ( or Steroid Responsive encephalopathy as it can also be called ) so I have researched this lately. It also presents with the same symptoms and guess what? Many patients are misdiagnosed as Conversion disorder/ FND. It is quite rare and patients will have a high Thyroid antibody count even if they don't have thyroid disease. Apparently, the antibodies attack the brain. Treatment is with steroids and seems quite good in most cases.

You may already know this information so forgive me if you do. It is just what I have found whilst researching after being diagnosed with FND ( which I don't think I have! ) I had to put the info out there in case it helps anyone.

If you need more info just ask.

Best wishes

Carolineanne x

[FND_ Partner Administrator FND Hope Australia FND Hope UK Group Admin FND International Volunteer FND Hope]

This is very insightful. Thank you

[1fnd Partner Administrator FND International FND Hope Volunteer]

I had read about Hypo and Hyper- kalemic Periodic Paralysis, but had not looked into the thyroid problems to this extent. I too have found my symptoms were from another vascular disorder with and autoimmune sort of twist. I ironically after having all three thyroid tests (from same blood) found 1 test saying thyroid low (I am on levothyroxine) 1 test saying normal and 1 test high -Graves disease high. I will definitely be looking into this more.

Thank you

[CarolineAnne in reply to 1fnd]

Hi

Graves can cause Thyrotoxic periodic paralysis. I am thinking that this is what might be happening to me, even though I have Hashimotos (underactive). Apparently, you can swing from one to the other ( Hashitoxicosis) which affects the potassium shifts the same as in the familial periodic paralysis. Which then results in the symptoms of muscle weakness, paralysis etc that we are experiencing.

I think it can improve when the thyroid is sorted. So here's hoping!

Best wishes

CA x

[Thirza]

Thank you for the information which goes to prove my theory that a lot of people misdiagnosed as having FND simply because of the lack of time, facilities, resources and interest.

I think I may have CMT as my hands and feet show the signs of this type of disorder plus four family members have similar problems. I even took the trouble to draw a short family tree to explain where we all fit in the hereditary spectrum but the bleeper went for the end of the neurologist's surgery and the whole thing was dismissed!

What chance to we have ?

[CarolineAnne in reply to Thirza]

Hi Thirza

Sorry to hear of your Neurology experience. Sadly, I am hearing a lot of similar stories. I think that we really do need to do our own research with symptoms and family history and then find a good doctor who will listen.

Maybe some people's symptoms can be from stress or trauma, I don't know but I do think we have to look into alternatives if the diagnosis doesn't feel right. After all we know our bodies and symptoms better than anyone. I certainly haven't had any trauma or out of the normal day to day life stresses in my life. I like to have an open mind and not dismiss anything or judge anyone. I wish more doctors could be like that don't you?

Best wishes

Carolineanne x

[Thirza]

Hi CarolineAnne,

Yes, like you I try not to judge and dismiss what I am told and especially by the professionals. I feel so sorry for my sons who have looked after me at times since they were nine and ten. They held me whilst I struggled for breath and gave me sips of protein drink when I was in hospital in February of this year. My sons are now 35 and 36 and have their own families but we are no further forward with my health since my MS was de - diagnosed a few years ago. At least when I was treated for MS there was respect and MS Society back up. Now it seems like the three of us are living through a bad dream where doctors and nurses treat patients with reticence. I am not a different person,my symptoms are the same but the treatment has vastly changed. At least a kind nurse put me on a ripple mattress as I had not moved for three days. Do doctors really think we do this for the 'fun' of it?

I am so glad that you have managed to find someone that is helpful.

Best wishes,

Thirza

[Louisajc in reply to Thirza]

I really struggle with the attitudes too, when I try to talk to doc I get told learn to live with there's nothing else wrong with you! Not even willing to try and consider what your saying. Can I ask when you put your two palm upwards arms outstretched and close your eyes for 20/30 secs does one hand arm drift and turn slowly to the side? As far as I can tell not a fnd thing but doc won't even let me show her as not interested. Like you guys justs trying to get answers. My thyroid is coming up one point lower than needed for tabs, I have had grave disease 6 yrs ago for yr or so I would dif say each month my thyroid goes up and downburst told its fine despite being hoarse and thyroid visible swollen!So grrrr lol I m trying to keep my sense of humour. House bound a lot but just trying to accept it what else docs happy to leave us like this. Career gone and I'm only 33. . Medical guys a lot to answer for! Frustration showing sorry!!!

[Thirza in reply to Louisajc]

Hi - and thank you for messaging me. After doing much research, including asking my wider family questions, I have had the courage to go to my GP and tell him that I think I might have Charcot - Marie - Tooth Disease. He very kindly did the physical tests and has referred me to yet again see a neurologist but the GP did not dismiss my theory as I definitely have some of the signs, including having to wear AFOs for both legs and I have three cousins who have neurological symptoms. In answer to your question the same happens to me as when I shut my eyes I have no idea where parts of my limbs are situated. Keep trying as I as least have got a little further. Best wishes.

[Louisajc in reply to Thirza]

So pleased your getting somewhere so hopefully you can get some help. I will keep researching :-)) take care

[annarhodes in reply to Louisajc]

Louisajc that could be fnd as it effects each person differently.

[Nacho]

Great info above, thank you soo much for sharing this. I will do a little more reading.

[Hidden]

Hi

I have been diagnosed with FND after 7 years of tests, having problems with work as not covered by DDS, but I think I have been diagnosed wrong, as I think I have fibromyalgia as my symptoms match, don't know what to do or request more tests or speak to someone who specialises in it.

[annarhodes]

Let me tell you my story. 15 years ago I had thyroid cancer. It was removed and I was put on thyroid meds. 8 years ago my doctor took me off of synthroid and put me on armour. Then the symtoms hit. It was bad. I have seizures I have fatique I have memory issues body tremors and speech problems when I have episodes. I was so bad I was in bed most days and using a cane. Then I went to a new doctor after 4 years and he took me off of the armour and back on synthroid within 2 days the episodes stopped. That was 4 years ago. Over Christmas they episodes reappeared and I was diagnosed with fnd or conversion disorder. I spent 8 years trying to find out what was wrong with me. I also have b12 deficiency and other hormone deficiencys. I have had so many doctors assure me that my thryoid has nothing to do with any of this. Im here to tell you they are full of crap. When my meds are off I know it and thats when I flare up so please check your counts.