Second Opinion?

Hi,

I’m not sure if this is the right place to post, as my neurologist doesn’t think I have MS

BUT

I’m hoping someone could give me advice as my Neurologist suggested that I seek a second opinion.

My symptoms started last summer, tremor in my right hand, a “dead” right arm and grip problems meaning I dropped things.

A period of intense fatigue followed with pins &needles in my right hand and foot plus a weird sensation that my right leg was wet out of the blue and a general feeling of “spaciness” / dizziness.

I got suddenly really ill in sept and suffered a seizure and was rushed to hospital.

After a brain scan and EEG and a week in hospital I was sent home to await a neurology appointment.

At my appointment, my Consultant said this was possibly all caused by a viral illness exacerbated by me not resting or taking time to recover (small kids, busy job etc - I’m a get in with it kind of girl). The seizures were likely functional, my bodies way of reacting to extreme physical unwellness and exhaustion.

He mentioned FND as a possible diagnosis for my symptoms (something I was sceptical of as I don’t seem to fit the criteria I have read and had no mental health issues / recent or past trauma).

Nevertheless he ordered MRI Lumbar Puncture and a raft of blood tests.

Today he told me that THANKFULLY they are all clear and essentially advised me to go back to my GP to discuss Chronic Fatigue symptoms.

He also suggested seeing another neurologist - he suggested this without me prompting.

He said sometimes there are no explainations for neurological symptoms saying “it’s a woolly discipline” but said another neurologist may do different tests so it was worth considering.

He had no explanation for my tremor, in fact I had to ask about it and if it could be ET. He has said it could be ET and given me a prescription without examining me or assessing it…

There was no mention of FND today.

He told me I’m on “the right track” because im trying to carry on with life as normal and in work

I told him life is far from normal, I’m exhausted all the time, can’t look after my kids properly and I have to take days off as holiday in work to manage my fatigue plus vastly reduce my duties. The weird sensations and trouble with my right hand plus my tremor have not gone away.

I get the impression he didn’t know what to do with me because I didn’t fit in a box.

Of course it’s amazing that the spinal mri and LP didn’t throw anything up - but that doesn’t help me in trying to figure out how I get better, when despite my best efforts to carry on with life, I’m just not well and am struggling a bit to cope with such a dramatic change to my life.

Has anyone else been told to seek a second opinion? What would it achieve? If it hadn’t been my neurologist who suggested it, I wouldn’t have thought to go down that route…

I hope all of this makes sense.

Thanks in advance!

Hi, of course it makes sense to seek another opinion. I`ve had countless in 22 years!

It took that long to get my diagnosis.

There is something going on and if your neuro suggested you seek another opinion, then he must think it is worth investigating.

What area are you in? I ask because I travel miles to see an expert in Liverpool.

Boudsx

Boudica, Where do you travel from? I hope you are ok Lina x

Get a second, third, and 20th opinion if you need to. My diagnosis took nearly twice as long as Boudica’s because no one would take me seriously and my few MRI’s were negative. i also never got tested while I was having problems, because it always took so long to get an appointment. If your gut is telling you that something is wrong, then keep pushing and don’t give up!

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Finding that whatever is the matter might be something that will get better is always good news, even if it doesn’t feel that way.

Obviously you are itching to find out what ails, and I don’t blame you, but an alternative is just stepping away from the vehicle for a bit and waiting to see if something else comes up that will, perhaps, make further testing more obviously likely to have a productive outcome. It is exhausting being ill, but it is also exhausting chasing down hard-to-dx illnesses, and there is something to be said for waiting and seeing. Time, as they say, is the best diagnostician.

Good luck with whatever comes next.

ALison