My story thus far....and some questions.

New diagnosis and before diagnosis
1

Hi , everyone , so here is my story.

It started about a year ago. I was having many dizzy spells, and my hands were tingling day and night. Especially when I went to sleep. Also, was having some eye issues, including light sensitivity and floaters. After about 6 months of this, finally got into a neurologist. Ordered a carpal tunnel test and mri of brain and brain stem. At that point i had very slight carpal tunnel and my brain MRI turned out completely normal. In the meantime, my dizziness has stopped and the tingly hands have stopped during the day. Went to see two eye doctors who both said they could see nothing wrong with my eyes. At that time my neuro also ordered a c-spine mri. Turned out completely normal, other than two herniated dics in my C-6, C-7 area. Two other little things started in the meantime. My right knee sometimes feels tight and weak, and also, it seems I sweat alot lately. When looking on the internet i have almost convinced myself it seems i have PPMS. I have even went as far as to ask my neuro for a LP, to which she said no, and not at this time since my MRI have showed nothing. She basically said she would see me back in 6 months for any changes.

So what am i to do? Went to neuro and eye doctors who said they see nothing. Even though I think PPMS. I guess I just have to wait to see changes in 6 months??

2

Hi,

Please, please, do yourself a favour, and stop Googling symptoms. Any form of MS is quite rare (only about 1 in 1000 people), and PPMS rarer still, at only 10-15% of those diagnosed. So that makes a PPMS diagnosis about 1 in 10,000 people! What makes you so convinced you’re that 1 in 10,000? I can’t say for certain that you’re not - somebody has to be - but there are 9,999 chances it’s not you!

If you did have PPMS, it’s unlikely any of the symptoms would have stopped - which you say they have! The whole point about PPMS is there’s no remission, no recovery - it’s downhill all the way. So if there’s been spontaneous recovery from any of it, you don’t have PPMS - by definition.

There are over 100 conditions that mimic MS in some way. MS is a diagnosis of exclusion, which means everything else has to be ruled out first.

What can you do? Nothing - just wait and see, as you’ve already observed. If your conviction is correct that you have PPMS, you will lose nothing by waiting, as you may or may not know there is no licensed treatment for it anyway. That is, there is symptomatic relief - as for other form of MS - but nothing targeting the disease itself. So it’s one of those rare cases where there’s genuinely no medical advantage in finding out sooner - six months wouldn’t change anything.

In theory, symptoms can still be treated whether or not you have a diagnosis, but if your only ongoing problems at the moment are excessive sweating and an occasional weak knee, I’m not sure there are any treatments specifically for those. Weakness (anywhere) is typically treated by physiotherapy, not drugs, so you might be able to get some exercises to strengthen the knee, but there won’t be a pill you can pop. I don’t think there’s a pill for sweating, either, although there are some heavy-duty over-the-counter antiperspirants that help some people. Odaban was one somebody recommended to me (not tried it yet). There was another whose name I can’t remember.

Your pharmacist would know, although I’m sure you can search on Boots’ website or Amazon, if you’re too embarrassed to ask.

Tina

2 Likes
3

At the moment it seems that waiting for 6mths is your best option.

With what you’ve described, it doesn’t sound as if you have PPMS, Tina has given you the numbers! I’ll echo her advice by saying keep away from Dr. Google, he’ll do you no favours, see your GP for symptom control/relief & get on with your life until you next see the neuro

Rosina

2 Likes
4

Thank you for the replies. I appreciate it. In terms of whatever I have, I do agree, i should stay off the internet and just let the doctors do their thing. Sometimes it just feels so hard to get on with life when something is wrong, just have no idea what.

5

Hi,

There is more than one discussion going on in this vein at the moment, and I can only support what’s already been said in the other.

You’ve got to look on it as positive that no evidence has so far been found that would support an MS diagnosis. It’s a good thing, not bad, that there’s no smoking gun at this point. Unlike many here, you still have the chance it’s nothing at all to do with MS, and something much less worrying.

Researching on Google the worst possible outcome associated with your symptoms (not only MS, but PPMS, no less), and then actually feeling let-down the evidence didn’t support your theory, is a very pessimistic approach, and I’m not surprised it makes it hard to get on with life when you have already persuaded yourself what the diagnosis should be, and feel doctors can’t or won’t see it.

There is no 100% reliable test that anyone does OR doesn’t have MS, but MRI remains the best diagnostic tool we have, so if that is showing nothing, you need to look on that as encouraging, and hope it shows nothing next time, too.

I know you want answers, but hoping to feel vindicated by the discovery of MS lesions is cutting off your nose to spite your face.

Be thankful for each clear MRI you have, because each one makes it a little bit less likely you have - or will ever turn out to have - MS.

Tina

3 Likes