recently diagnosed

[RottenGarden]

hi all,

I was recently diagnosed with FND after being admitted to the hospital with weakness/stiffness in my legs and my arm. My symptoms stated in early 2023 when I began experiencing muscles twitches and then loss of range of motion in my left arm. I then began experiencing stiff legs (mostly my right leg) to the point where it became difficult to walk. I get muscle twitches in my legs and well, mostly my calves.

I have a history of disc issues in both my neck and lower back. Two years ago I had cervical Radiculopathy and it was extremely bad. It affected my left side which is the same side where I first experienced weakness and muscle twitches. My left arm is noticeably weaker than my right arm and is smaller (doctors noticed muscle wasting in my left tricep).

Honestly I’m really shocked and surprised that I was given the FND diagnosis when I have herniated discs that are suspected to affect the areas where I have weakness. I also asked to have an EMG and the doctor who gave me the diagnosis said that there was no point since there was nothing wrong with me physically. I got the EMG anyway and it came back abnormal and it showed increased motor unit amplitude, increased motor unit duration, increased polyphasic potentials and reduced recruitment in over half of the muscles tested (but it was most pronounced on the left side and triceps area). My understanding of FND is that there are no signs of physical problems, and weakness will usually only affect one limb or side. I have issues with all four limbs but it’s worse on my left arm and trunk, and right hip. And it’s not so much weakness as it is very tight muscles with spasms whenever I move or exert myself.

I’m questioning if I received the correct diagnosis and if I should seek a second opinion. There aren’t many FND specialists in my area, and I need to wait until early 2025 to see one. Meanwhile, my condition is deteriorating and I’m really not being treated other than taking a muscle relaxer (that my primary care doctor seems reluctant to refill). I’m on short term disability and worried that when I return to work next week that I will continue to deteriorate and without a plan to help, that I will just end up in a worse state. Doing regular every day activities can be exhausting and cause very painful spasms.

If anyone has had similar symptoms to mine or can share insight I would really appreciate it. I just want to start feeling normal again.

[RottenGarden]

Thank you Lauralou. I too am someone who always wants to get stuff done. I’ve had to learn to slow down and try not to do too much but even during this time of recovery I’ve found that I’ve been doing too much.

As far as taking more time off, it’s something I’ve contemplated. I may have to reach out to my doctor and explain that I am still not able to return to work yet. I’m undecided about it though.

Thanks again for your thoughtful response.

[Aberheart in reply to RottenGarden]

Hi RottenGarden,I'm sorry for your difficulties and all you are going through . I would suggest speaking to another Doctor about your concerns. Are you in the UK? You have a right to express your opinions and you know your own body. If you don't get answers from the Doctor you are seeing presently, then ask for a second opinion and the results from your EMG to be re-evaluated.

It shouldn't have to be such a battle to get the support you need and it's so frustrating to hear. As if life isn't challenging enough!

I hope you press forward for more answers and don't just settle for a diagnosis you don't feel comfortable with that doesn't sit right with you.

Physio therapy might help meanwhile with walking , maybe it could be suggested?

I am about to try that in the next 2 weeks so can't comment yet on how helpful it will be.

I wish you all the best on this difficult journey.

[RottenGarden in reply to Aberheart]

Hello Aberheart,

I live in the United States, and it seems like there aren’t as many resources for FND as there seem to be in the UK. I find it incredibly frustrating that not only is it terribly difficult to get a second opinion, I’m not even being treated for the condition they diagnosed me with! I’ve also found that I’ve been mistreated ever since I received the diagnosis. When I was inpatient, I saw an immediate decline in the care I received. I was essentially ignored despite the fact that I was experiencing new and debilitating symptoms such as intense spasms in my back. I’m still very bitter about this and can’t help but think it’s related to the fact that doctors didn’t take me seriously.

I did start physical therapy yesterday, and to be honest it was difficult. I had some intense spasms during the session, but they were even worse afterwards. But I’m hopeful that it will help as I did find relief from PT previously.

As far as my diagnosis, I am going to ask to get tested for GAD antibodies to rule out stiff person syndrome. My symptoms do seem to be quite similar to SPS, and they tend to get better when I take Xanax (which is also consistent with SPS). This may also be the case for FND as well, but I need an expert opinion to see which condition fits best. In any case, I hope to get better answers even though it seems inevitable that this will be a very slow process.

[Aberheart in reply to RottenGarden]

I'm so sorry. What a difficult road to be on. I do think changing your Doctor is a good move but in UK that is much easier. You deserve better treatment, support and answers. I hope someone on this forum from US will have some good advice and be more knowledgeable and experienced with US medical services. ❤️

[Shimmyaway]

I too have read that FND usually affects only one side, but this is definitely not always the case. Sorry I can't help with info about the other symptoms, Do you know on what basis the Dr gave you the FND diag .. did s/he do the recognised tests .Hoover's sign and/or entrainment? Myofascial release therapy may help with the muscle tightness. Hoping for some relief for you.

[RottenGarden in reply to Shimmyaway]

The doctor said that she did the Hoover sign test but I don’t remember that. Basically they told me that my symptoms were exaggerated and weren’t explained by any physical problems.

Luckily I just got scheduled for a second opinion at Beth Israel Hospital in Boston with a neuro muscular specialist. It’s in 2 weeks which is really quick for this kind of appointment. So I’m very grateful for that. We will see what this doctor has to say.

[RottenGarden]

Also, I have to add that the doctor who gave me the FND diagnosis was a resident so she didn’t have a lot of experience. I’m not saying that to be mean spirited, but I want to see someone with more experience who can better explain what’s going on and answer some of my questions.

[eviedotty]

I can relate to the hard evidence based facts being called out as FND and when I did challenge it I was told it was both dystonia and FND I then spoke to my own doctor for a second opinion and was told if you have evidence based diagnosis then that is what the diagnosis is basically. But to assist you I will share my experience, I went to the professional that dealt with the specific issue for example my right side eye, it was checked over and then the hospital specialist checked it over again then the care plan was put in place and that was glasses with a tint to deal with white lights as that is a trigger and caution offered due to reduced eye sight on the right side and this has allowed me to do things again. Another issue was muscles and pool work was used to gain back some strength and confidence, it took months but I could eventually swim 20 lengths of the pool and the feel good factor could not be better. However this would still be called out as FND by a neurologist. The general feeling is that if there is no cure the go to thing is FND and because it is a diagnosis its supposed to make you feel better and that was from the doctors who are promoting FND which apparently still sits in the diagnostic manual for mental health