Medical gaslighting

[KF79]

I've been reading here a while now, and am so grateful for the generosity of those who are diagnosed in sharing your experiences.

In February last year, my body started to change. I developed stiff calf muscles, spasming and cramping in my left hand and lower limbs, but mainly in my right foot and calf.

I've had brain and full spine MRIs (all clear from MS or any other pathologies normally picked up in MRI). Had these twice in the past year.

I went to see a specialist GP for treatment resistant hypertension for the past few years (which I had never previously experienced). I was diagnosed with orthostatic intolerance, EDS and chronic fatigue. None of these are surprising, as I'm Autistic and ADHD and these are commonly cooccurring conditions for neurodivergent people.

I have lost 60kgs. I had gastric sleeve surgery in 2022 and so it is hard to know whether the weight loss in the past two years would have occurred or not, however, I rarely eat because I just don't have an appetite. I have also been diagnosed with dysphagia and a left hand tremor. The report from that specialist outlined 'twitching at baseline' which I thought nothing of and assumed it was related to the tremor, and I was referred to a neurologist to look for movement disorders.

I have had to relinquish care of my 12 year old daughter who is disabled to her father (we have a great relationship) as my body's capacity to care for her is no longer adequate.

On seeing the neurologist, she assessed me for Parkinsons, said it was too early to tell but then without any comprehensive assessment told me I was 'depressed'. I told her I am absolutely not depressed. It was a horrendous experience to be honest, she ushered me out of there, saying I was definitely slow, had a left hand tremor, and said the working diagnosis is functional neurological disorder.

She ordered bloods, I told her I had just had bloods done and the results were with her, and they were normal. I waited a really long time to see this person. And within 20 minutes she decided I had FND. She said "Well do you want me to order a test where they stick needles into your muscles?! It isn't pleasant!".

I shut down at that point and left, in shock. I wrote to her, shared my experience with her and she then ordered an EMG and more MRIs. The MRIs came back yesterday, clear (again). She, however, is on leave and has not touched base with me.

Since then, I have experienced a very fast decline in my left hand and right leg among other things. My fingers want to stay in a curled position and my hand is stiff. I cannot use it for lifting or holding anything without significant cramps. Typing is a nightmare, as my index finger has a mind of it's own and suddenly hits keys, as it twitches regularly. The odd feeling I have in my hand has extended up my arm and my shoulder has been sore (I assumed I had pulled a muscle or something but it's been sore for a year). I trip over my right leg. I have fallen and broken my arm.

I now have fasciculations all over, and they're intense and non stop. Particularly worse in my hand and leg but also in my neck, face, torso, back and most recently, my tongue. I do experience my speech changing, slowing, and I at times struggle with speaking as my tongue feels like it is in a strange spasm, and my jaw feels particularly achey and tired, hard to keep closed and wants to hang open in order to feel relief. But my tongue, and my speech changes are not consistent.

The cramping and spasms are intense and extremely painful, moreso at night. I have myoclonic jerks in my shoulders and now in my legs.

I hadn't realised I had fasciculations because I couldn't feel them. But I saw them by chance once and filmed them, but now I certainly feel them. They keep me awake at night, and my sleep..it's just not normal for me. Waking at 1am and getting up and staying awake because sleep just isn't happening.

It's not anxiety. I take magnesium, zinc, lexapro, cbd, blood pressure meds. It isn't menopause, I went through menopause young.

I do not know what to do. For now, I'll wait for the EMG. I had to chase this up myself, because she had written in thick letters on the form 'NOT URGENT'. So the hospital didn't call, and more than a month later I called them to organise it.

Getting a second opinion means sitting on another waitlist for months, and the fact that she has given a working diagnosis of FND means that this is the info practitioners will have access to moving forward.

I can't walk my dog anymore, I can't leave my home. I have a support worker because any activity causes my muscles to tremor and fasciculate and cramp.

I do not have health anxiety. I am not a hypochondriac. I am not in pain. I am not imagining this.

Has anybody else been in this situation and can I ask how you handled it? I am the single parent of autistic children, I want to know where I'm at, I want to plan for the future and I do not have any family.

 

[ShiftKicker]

Hi there,

Sounds like you've had a really tough time of it. The only thing I can recommend is to keep plugging away, as it is clearly badly affecting your day to day activities. Frustrating when it's very urgent in your life, and no one is available to provide answers or treat it with the same urgency it feels to you.

You've got an appointment for an EMG, which will provide more in the way of actionable information. When is that? You may have to seek a second opinion with a movement specialist, despite the hassle or possible lengthy delay. Some neuro conditions are difficult to tease out and it can take a different neuro/neuros to recognize a pattern. Your mention of EDS means you've seen someone for that diagnosis- can you return to them and ask them for some help in finding another neuro?

Yes, having an "FND" in your records somewhere can provide a huge source of anxiety at not being taken seriously. This situation can be approached in different ways. One way is to find a different neuro and start at the beginning again for a second opinion. Another is to find an FND specialist and get a proper assessment with them- there are specific criteria that must be met for a proper diagnosis of FND- and a specialist who works primarily with folk with FND would be able to rule it out/in based on the most up to date diagnostic criteria. It's approaching the issue from two different directions. Neither would feel ideal when you're struggling, but finding answers, no matter how delayed, might help in getting appropriate care.

Addressing the symptoms you've posted, it sounds like you are experiencing issues that do not fit the pattern that would cause concern about ALS. (more info here: Read Before Posting) Not knowing much of what is in your medical records wr your clinical assessment, it's hard to say, but it sounds like the doctor had been considering a different group of conditions- Parkinson's/Parkinson's plus. It's a different type of movement issue (slowness, tremoring, rigidity). If you have access to your reports, it should outline the "why" of the specialist's diagnosis.

 

[lgelb]

If you have EDS, you should be under care of a medical geneticist and/or rheumatologist, as there is a specific set of activity guidelines to help avoid deterioration. Lexapro is known to often cause disrupted sleep, which in turn can cause the issues you mention, including abnormal movement when you want to sleep. CBD can cause cardiovascular issues.

In addition, Lexapro in combination with some other drugs can cause serotonin syndrome. Depending on your BP meds, there can also be some interactions with CBD, Mg, and the Lexapro. In short, I would reconsider your med/supplement regimen with a clinical pharmacist or GP or someone interested in such things. When that's the best it can be, it's a lot easier to parse what might be related to meds and what should be explored further.

You can also look at a site such as drugs.com to get a feel for what issues there could be.

 

[KF79]

This is really sensible actually, thank you for taking the time to respond. I've gone ahead and looked into seeking out an FND clinic. I honestly wouldn't mind if it was FND, I'd just like the diagnosis to be because I fit the actual criteria (which is definitely a possibility). Thanks again, EMG is in two weeks.