About your diagnose! How confident you are?

New diagnosis and before diagnosis
1

First of all, greetings from Finland.

I found this forum, and because we have similar but much quieter, I decided to come here and hopefully have a good chat with you guys. (Sorry if my language is terrible, I do my best :slight_smile:

Shortly. My background. I got diagnosed last summer (approx. a year ago). First symptoms I had, I think, 2013, restless feet. Didn´t think it was anything and symptoms disappeared. 2015 noticed some weakness. Couldn´t run as long as yesterday. Slowly it progressed and I noticed I cant run anymore. ~2017 things got even worse and 2019 (end of the year) I had to go to local doctor. I couldnt walk like at all. Funny how long I was pushing it back. Denying or something. Well, things went fast. Doctor → neuro → mri → ms suspect → likvor → ms dg. I had lots of lesion in my spine, which is my problem, and approx. 15 lesions in my brain. Also they said it is PPMS. So almost a year now with an official ms diagnose.

I have never been ill. Never been away from a work. Never have any medication. Flu maybe twice in my lifetime and yes, im now 36 years. So, suddenly I have ms. The mental side of this is horrible for me. I cannot understand this. I should be in wheelchair, but I try to manage. I cannot be in wheelchair, my brain says to me. But it is my problem and I will one day accept it. But for now, it is just one big mess in my head…

For one reason I decided to write is to ask. Do you accept your ms diagnose. As for me, every day I think what if my diagnose is wrong? Because PPMS I dont have any medications. But if they got it wrong and I have some neurological disease they could cure of stop with meds? What if time goes and I die?

So, do you think Im just a paranoid, not accepting (yet) my ms and this is just stupid thought in my head? Do you think this kind of mistake could happen in era of mri and improved likvor examination?

My result are, tho, quite clear if I am right:

3 juxtacortical lesion, 4 periventicular lesion, some in deep white matter (parientally?) and one in cerebellum hemisphere. In spinal cord: from C2 to end of thoracic multiple lesions. Likvor: IgG index: 1.2, 24 oligoclonal bands (4 found in serum). All other, cells, protein and so on normal range.

So, I think this is classic ms. Also for PPM, McDonald criteria 2017 rev. check out 3 out of 3. Also I have lesions in all common places of brain.

So people, my fellows and friends. Am i only one who is scared of misdiagnose? Even if I know it has to be. It must be. I did mistake while I was in undiagnosed. I google for brain lesion and in how any different diseases they are found. Without google, I think I would not worry this much.

Thank you and sorry!

Kimd regards,

-M-

2

Hi Moh,

Your English is very good, the only Scandinavian work I know is ‘Takk’.

In my case I was glad to be diagnosed RRMS in 2008 because I just really wanted to know why my body was doing all that weird stuff.

I believe that I have progressed now but haven’t been told this by a neuro. Maybe I need another MRI?

Don’t worry that you are going to die, we all are. It’s part of the human condition.

It does sound like MS because you have had all the tests.

The best way through is to acknowledge what you can do and make the most of it.

stop googling because it only serves to cause stress.

avoid stress because it just makes everything worse.

take care and Takk

C x

3

Hi Mo, I did spend years looking for a definite diagnosis. I presented clinically as typical PPMS…mobility shot, incontinence, spasticity in legs and arms, terrible fatigue.

I had 4 MRIs, 2 LPs, 2EMGs and lots of blood tests. But nothing showed to prove MS.

Later I was wrongly diagnosed with a different condition ie HSP, but tests eventually ruled that out.

It took 22 years to finally be told I definitely have Spinal PPMS. It was a hell of an uneasy journey.

Your results do sound like they are MS. I feel it is time for you to accept it, I`m afraid.

You are welcome to keep chatting to us.

Boudsx

4

Hello moh

I don’t have PPMS, my current diagnosis is Relapsing Progressive MS (I’m greedy, wanting to straddle both RR and Progressive).

It sounds to me that you do indeed have PPMS. Also that you know this. Acceptance of disease is a strange thing. We are encouraged to ‘accept’ a diagnosis and give it space in our lives.

Well knickers to that. You have a disease that is incurable and has already made major changes to you and your life. It has only been a year since diagnosis and you are young (compared to many if not most of us - I am 54). Looking into the future must feel very scary and uncertain for you. Don’t be too quick to accept it.

I don’t know what disease modifying drugs are available in Finland, but in the U.K. there is a DMD that is licensed for PPMS - Ocrevus (Ocrelizumab). It is expected to reduce progression in PPMS. It’s available here for people early in their disease course (less than 15 years), who can still walk 20 metres or more and have evidence of MS activity on MRI scans. Have a look at: https://mstrust.org.uk/a-z/ocrevus-ocrelizumab

It might be worth discussing with your neurologist and/or MS nurse (assuming you have them in Finland). Looking into the possibility of a disease modifying drug does not mean you are, or are not, ‘accepting’ MS. It means fighting it with everything you can.

Regardless of your being able to take Ocrevus, think about your fitness level, try to improve your core and flexibility. Many people with MS do yoga. It helps to build strength and muscle tone. Or if you have access to physiotherapy, or hydrotherapy? Whatever is available to you, exercise will help.

Best of luck.

Sue

5

Understandably you don’t want to accept your diagnosis. But worrying about whether it is a misdiagnosis won’t help you. Instead accept that it is what it is, which will then allow you to think what positive steps you can take to keep yourself in as best health you can, and keep your whole body working as best it can.

You may be interested in what Dr Terry Wahl’s did with her own SPMS, and for others through her clinic. She uses diet to optimise her body at a cellular level.

It is becoming increasing recognised that oxidative stress (at cellular level) and mitochondrial dysfunction (mitochondria are the power house within the cells) lie behind much chronic disease, including MS. Genetics, environmental issues, viruses and other pathogens also play a part. You can’t change your genetics, you will always be coming up against viruses, you may be able to change aspects of your environment to reduce harms, but you can certainly, through diet and lifestyle changes do things to reduce oxidative stress and improve mitochondrial function and work towards a better functioning immune system.

Mathew Embry has done something very similar with diet, exercise and lifestyle changes, guided at the time by his father who is also a doctor.

I find it interesting to see what doctors do, when they or their family develop MS, motor neurone disease etc themselves. The two examples above show how they step outside the narrow medical box and start thinking of the body in more holistic terms.

6

Hi.

And I really thank you all for writing.

I know one problem is that the diagnose is new. And the fact that i have never been ill or taken any medicine, so this is totally new situation. And well, as this is still serious disease, I wonder why? If I can get MS, why it wont be something more serious like ALS? Or virus/bacteria infection of nervous system they mistakenly thought ms. Some crazy ms-mimic. And I will die.

I know this is the process most us go through. The mental one. The hardest one.

My personality is always been like I have to know and I have to be sure. I hate the fact that we cant have specific test for ms. So I can think what if… What if they missed something. And this totally make me more “sick”. The everyday thinking of my situation. I wish there would be a rapid test they can run to make 100% sure diagnose. It would ease me, i think.

Im not affraid of future, I will face it with all my strenght. But how I can get over my mental issues, it is more difficult as I thought…

I have physiotherapy weekly. Also I have tons of equipment at home to exercise by myself. So I do fight back with all my power.

PPMS, we also have this one medicine option but because they didnt find any active inflammation, they did say we should not even try it. Lets see in future, they said and i did agree. And for me. Best option after all is manage without medicine. These are not the kindnest ones to medicine myself. What I have heard.

7

Hi,

Thank you for your comment.

Do you mean her? https://terrywahls.com/

I think I have heard about her somewhere… Propably faced in some ms facebook group, I think.

I totally need to sit down and read. Thanks!!