I think I have either MS or Parkinsons disease - is there any point finding out now when not much can be done anyway?

[S1S1]

(I started another thread related to this in health but pls feel free to ignore that!)

I have been going to the doctor for the past 5 years (on and off) with a slow general detereoration in my health.

Doctors can't figure it out but seem to assume that it is a grouping of symptoms that are unrelated and minor and that I am a bit of a hypochondriac.

But the last few months, I've had another couple of symptoms that point to this being neurological (problems with swallowing reflex, stuttering) that in addition to my other symptoms (tremour, muscle weakness/pain, reflux, bladder urgency) point to a neurological condition.

I hate hate hate going to the doctor. Hate hospitals and hate even more the feeling that I've seen every doctor on the planet. I've not seen a neurologist at any point but I'm sure if I go to the doctor with the stuttering and swallowing issues, they will send me to one.

Is it worth knowing now? Parkinsons disease seems to run in our family. If I have it, I don't have it badly yet and I would be young to get it. I think I'm terrified of going to a neurologist and then them telling me that they don't know what is going on (which is what has happened over the last 5 years with every other doctor).

yes of course there's a point in finding out! If it was something serious which could not be "cured" at least symptoms could potentially be controlled.

My Mum was diagnosed with MS at least 6 years ago - she is still mobile, living very independantly, driving, working etc etc.

You MUST go back to the doctors.

you know what it is la123, it's the fact that I've been going and going and I've been fobbed off for years. I almost can't bear going back and saying 'oh now this is wrong too!'. Do you know what I mean?!

The symptoms are not affecting my daily life (yet). The stuttering took me a bit by surprise but it's not happening very frequently.

I know I should go but I almost wish I had a body double that could do it for me and come back and tell me what they said so that I don't have to go through all the tests and questions and....etc.!

If you have Parkinsons running in the family, see your GP with a list of your symptoms and ask for a referral to a specialist. The symptoms could have another cause entirely, or if it is the early onset of a disease like Parkinsons or MS the earlier treatment is sought, the better the chances of slowing its onset. A relative is undergoing, so far, very positive drug trials with her MS.

I have MS. There's things that can be done for both of these diseases so it's not hopeless. You need to pop to your GP and tell him or her you want a referal, you have to find out what you are dealing with so you can work around it.
There's alot of new medication for both MS and Parkinsons (not saying that you have anything like this though), it all helps. You have to take the first step and see your GP though.

Just be calm at the GPs, list the curent symptoms, that Parkinsons runs in the family, you are concerned and would like a referral to a specialist.

my mum was fobbed off with her early onset Parkinsons for nearly 10yrs - it was depression, stress, her arthritis, her imagination.....

She was 45 when they finally agreed to look into it further, and no suprise to her (Parkinsons also in my family - but she's the first to have had early onset) it was diagnosed.

oh MaMoTTat, your poor mum, it is so depressing being fobbed off, I really sympathise with her.

I think my hesitation in going back is that I suggested it years ago and was basically laughed out of the surgery (parkinsons).

I've almost had enough of doctors now and if I do have something like this (and it wouldn't be a surprise to me either if I was finally diagnosed), it means I will be constantly going to doctors for the rest of my life!

You just need to find one GP in the practice that is sympathetic. It's not easy. I was diagnosed with post viral fatigue first, I felt like a hypochondriac.

Thanks belle, and others who have shared their stories.

Belle, would you mind me asking how they finally diagnosed you?

Parkinson's can be controlled well for years with the right combination of medication. And in many cases early-onset Parkinson's responds better than late-onset Parkinson's to some of the newer treatments -- so yes, ABSOLUTELY worth finding out if you have that. AFAIK the treatment for MS would be completely different.

There are loads of different drugs for MS to lessen the symptoms and to reduce the chance/frequency of relapses.

I wrote a blog S1S1, it's on here. If you look at the blogs bit you'll find it. I managed to get a referal to a neurologist and it was picked up on a MRI (this was after he was adamant it was a migraine). I then had a lumbar puncture which detected massive levels of some weird bands that they were looking for showing it was active. The symptoms for MS do vary hugely between patients though so my symptoms may not be the same as someone elses.

We have a family friend in her 70s who was diagnosed with MS in her 20s and it has never affected her daily life. She has controlled it entirely through diet and exercise. She walks with a stick now, but she is 74!

agree that the Parkinsons' can be controlled well for years. IT was complicated for my mum (as she also had high blood pressure and arthritis and took pills for both of those already) but it staved it for a long long time.

Thanks belle will look at the blog and bike, that's very impressive! I know ms can affect people in very different ways so thanks everyone for the info.

I suppose for years I was absolutely determined to find out what was up with me but for almost 5 years have been told it isn't neurological (when I always thought it was) and now that it looks like it might be, it's almost as if I don't want to know now!

I wanted to know, it's easier to know what you are facing. I didn't want to just wonder what was going to happen.

This is awful for you. Having had some fecking horrible health things going on in our family I can tell you its almost always better to know.

My OH has MS. He doesnt fit into the diagnostic demographic. He is male and black. 'luckily' he went blind in one eye so that couldnt be ignored. If he hadnt I dont think he would be diagnosed even now.

It is notoriously hard to get a dx for neurological conditions.

Please go back to your GP. MS is bollocks but it is not the end of your life if you do have it.

OH still works, we have had 5 kids (one adopted, two birth children since his dx). We get by. Its not perfect but he is ok and we have a nice life

Not knowing is so horrible.

I hope you get some answers soon.

I also have a friend who was very sceptical about his diet affecting his Parkinsons until he went out for a day and ate everything he "shouldn't" he really suffered the next day - so it's def worth finding out and then you can research th best ways to help yourself as well as investigating the medication available.