Current experience and people’s thoughts?

New diagnosis and before diagnosis
1

Hello, I’m Paul and really feel the need to reach out to you because I am struggling.

Here’s my story. My dad has MS he was diagnosed with RRMS when he was 36 years old. Knowing my dad has it scares me and now I’ve been having symptoms. I am 32 years old male from Northern Ireland living in England.

3-4 years ago I developed pain in my left arm and some numbness in my pinky finger and shooting pains into my left arm. Also pins and needles. This gradually came on over the course of weeks. I decided to go to the doctor, at the time I was thinking MS. I’ve always thought since this I have MS. Doctor sent me for C SPINE MRI and came back normal and clear. I then decided to go to a neurologist private to discuss and I asked for a brain MRI which also came back clear and normal and sent me on my way.

Over the past few years nothing has really happened apart from sporadic pins and needles and fatigue. Left arm pain still remained on and off, it comes and goes.

Fast forward to now, since January of this year things have took a complete turn, gradually symptoms have developed over the course of months and weeks, I am now feeling extreme fatigue (even after 9/10 hour sleeps) sporadic pins and needles and prickly crawly sensations, tinnitus 24/7, lightheaded (like I’m going to fall over) feeling unbalanced and my gait feels off, memory is not as good, feel like my cognition is off and brain has slowed down, poor Co ordination and head pressure which is usually always there and bouts of blurred vision, also feels like I have a swollen lymph node behind my right ear on the ear bone. I have so many symptoms now it’s so hard to track them and remember them all so I’ve been trying to write them down.

I have been to the GP few months ago and they done bloods and all came back normal apart from elevated liver levels and then done a repeat test and came back normal second time. Explained my symptoms and she doesn’t think MS. But she still didn’t give me answers to what is going on either. She said she would refer me to neurology through the NHS but the wait times are very long, I accepted it and she sent me on my way.

I then decided to take matters into my own hands and go see a private neurologist. Before going to the neurologist I went to optician and had OCT scan and it showed nothing on the eyes because I was having bouts of blurred vision. I then had a consultation with him (neurologist) and he doesn’t think MS after doing a basic neuro exam but he said he would book some scans in for me to see if anything shows. I went for a brain, c spine, thoracic, lumbar and sacral MRI scan. Got the results back a few days later, (this was recently as in past week) and all came back normal with no evidence of demyelination or lesions. It showed nerve compression on c spine and also thoracic spine and wear and tear on the lumbar spine. (Which I just can’t imagine that causing all my symptoms).

I am now left in a position where I’ve had all of my central nervous system scanned and showing nothing. Been to optician and nothing. Neuro exam nothing. But I have all these symptoms persistently everyday with no explanation? I feel like now I’m advocating for myself.

I guess I would just like an opinion or some guidance? I know know one can diagnose me but with symptoms now for 3/4 years and scans all show nothing do I rule out MS? It feels like in my mind I’m convinced I have MS despite tests are negative. Thank you reading and your patience? I am now thinking about getting a second opinion from another neurologist and a second opinion on my scan, am I going crazy?

2

Hello,
Have you tried Lumbar Puncture test? I believe if your spinal fluid is high in B-cells or T-cells, that indicates multiple sclerosis.
It was a long time ago, when I had it done and was told this, but I could be mis-remembering?
Best,
JP

3

Hi, No haven’t had a lumbar puncture. Neurologist says there is no damage to my central nervous system which doesn’t warrant a LP. I have noticed recently that my symptoms are slightly improving which makes me more worried as it feels like I’ve had a relapse. I have decided to get a second opinion on the 11th of august from a MS neurologist and he is going to read my scans and also give me a consultation.

4

Hi Paul,
I’m in a similar situation. I first had symptoms a year ago but my head and spine MRI scans were normal except for a disc protrusion brand I was advised that had caused my symptoms. Didn’t seem likely. I’m also suspicious that I have MS but I don’t know where else to go with it other than waiting to see whether he symptoms start up again.
I hope you get some answers at your next appointment.
Best wishes.

5

Hello :slight_smile: Thanks for your reply. My symptoms have been very persistent over the past few months and gradually built up but I’ve noticed they are starting to get better, which makes me more worried because I think I went through a “MS Relapse” and now starting to recover and going into remission. As the symptoms started around jan this year I have quit smoking and went on anti inflammatory diet and I’ve taken exercise more serious. What symptoms have you been feeling? Thank you

6

I guess the only thing that would convince you that you didn’t have MS would be your symptoms going away and staying away, but that option isn’t available, alas. I hope that you can nevertheless take some comfort and reassurance from the fact that the very thorough set of scans that you have had have not shown evidence either of MS or of anything worse.

I hesitate to suggest it, but maybe the best thing for now would be to step away from the vehicle for a bit? I know you’ve got lots the matter and I know that your experience of MS in the family makes you fearful, but it really does not sound to me that you’re going to make much more progress as matters stand right now, and I cannot see how throwing more money at it is going to help you. They say that time is the best diagnostician. If you can bear it, I would suggest you leave it for now and see what (if anything) new happens.

7

Hi Alison, As much as I don’t want to admit it because my symptoms are so strong and I am very worried. You are right. Time will only tell what is going on and if it is MS. I think my huge Concern is the fact my dad has it and I haven’t had a very good experience with it watching my dad throughout the years. He was diagnosed in 1997 and it unfortunately progressed to SPMS. Hardest part is in my head I’m starting to think my future is going to be similar. Thanks so much for taking the time to reply :slight_smile:

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8

Alison makes a really good point and it’s where im now at.
Just over a year ago i started with a burning sensation in my foot and leg. I then had an episode of optic neuritis. Things settled andnin October the burning sensation started again but in both legs. I also had some vertigo.
I saw a neurologist privately and he felt my symptoms suggested MS but the scans didnt back this up. I’m having a follow up in another 6 months to keep a check on my eyes.
Over the last few weeks ive experienced the same burning in my legs and some sensations in my arms (burning and a feeling of water dripping). But this has been mild and has gone off again.

I’ve decided that if it IS MS theb eventually it will show itself in a more definite way. It took me a few months to come to terms with this decision but ive felt loads better mentally now I’m not dwelling on it in the same way.

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9

She does make a very good point. It’s very much so wait and see and surely something is explaining these symptoms but just hasn’t come to light yet. I had an MRI 4 years ago head and c spine because came back normal as well so it’s confusing. I’m trying to stay positive as we all are. Maybe in 6-12 months I might have a clearer picture of what is going on. I hope things turn out good for you :slight_smile:

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10

I remember when I was in hospital after a bad relapse once, they suspected possible Guillain-Barre syndrome as the neurological symptoms can be similar --I’m not suggesting that’s what you’re suffering with right now.
Best regards.

11

I have never had the “big event” that everyone talks about. The Acute relapse that seems to be typical of MS. But I also hear of people not having “the typical relapse event”. Although thinking and dwelling about things won’t help, it’s very difficult to get on with everyday life when you are constantly reminded that your body does not feel “ok” but there are no answers or evidence to back up what I am feeling. I know there are a lot of people in the same boat. Thanks for replying and getting back to me :slight_smile: