Last reply 2 days ago
Symptoms – Seeking some advice

Concerned I have MS, doctors have said I am fine, I started having vision problems about a year ago after a head injury. Since then I have floaters, have needed to get glasses (had perfect vision before), pain when looking around, some hearing trouble on my right side (tinnitus, but I also go to a lot of concerts). I also have intermittent episodes of numbness isolated to one toe or both of my kneecaps as weird as this sounds, and as I sit here today I feel like my legs feel off and tingly (this is new) after having a kneecap episode last night. I am a 25 year old male, am in grad school and do not feel all that sharp cognitively, I have ADHD and take vyvanse for that. I also work full-time as an accountant. Have not really noticed any body weakness. I had an MRI about 9 months ago with and without contrast and they stated I had no lesions, but have had really bad instances of eye pain flare up since. The neuro-opthamologist stated it’s due to anxiety after my head injury (but this was immediately after and I don’t know how fast nerve damage appears after injury), or how anxiety would require me to wear glasses full-time. I had none of these issues prior to the injury and vision was significantly impacted immediately after and is consistent with optic neuritis. I never do not have discomfort when looking around and one eye is worse than the other. I am a former college athlete and have had around 5 concussions, also include some recreational drug use (I know, no bueno) – so my head has been through a lot (Still was able to obtain a 4.0 despite this in my Master’s Program this year in school while working full-time, but not saying I don’t have a general “fogginess” and I feel I have memory issues, anyone can get an A in online college courses). I have been spending hand over fist in doctors appointments, MRI’s, brain supplements, glasses/contacts, hearing appointments, ect., I keep being told I have anxiety about it because obviously I know somethings off, but I do not have anxiety. Been a terrible year since my most recent head injury, just lost my mom suddenly, losing my vision, have a lot going on, and starting to get depressed about it. All vision doctors say it’s from staring at a computer all day when I literally lost my vision overnight. Just scheduled another neuro-opthamology appointment and just submitted for a callback from a neurologist, again, so more $$$ and I know they’ll just refer me to another MRI, so even more $$$ that I don’t have and still haven’t paid off all my last visits, but I want to know what’s going on. Do I sound crazy?

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gihan
3 days ago

Hello,

Just made this account! First time ever typing something.
I have had Ms for a litter over a year now, I had no idea what Ms was until o was in hospital with terrible eye pain and losing my vision over night. I had the numbness and tingly feeling and ended up losing the ability to walk straight during that time.

You don’t sound crazy! Sometimes when it comes to yourself if you know something is wrong you fight to get your answers! I was stupid and ignored all the red flags until it was too late. I’m sorry for all the troubles you have been experiencing I do hope it becomes easy for you!

I hope you don’t mind me asking but have you ever been offered a lumbar puncture? That’s what I had done and it 100% confirmed that I have RRMS. They told me that the lumbar puncture is the one test to confirm Ms suspicions. Although that is what I had been told I’m sure there must be other tests now!

Sorry about your mother, my sincerest condolences x

Take care!


srs424
3 days ago

@gihan I have not yet had a lumbar puncture this is my first time reaching out to neurologists again after I have had continuing symptoms and now the concern with the numbness in my legs which is causing my current freak out mentality haha. All I had was a MRI with and without contrast and they stated I had no lesions and looked healthy, but these same doctors didn’t really take me seriously in the first place and just said I “seemed fine.” Not saying I don’t think they looked at my MRI hard enough, but I just have concerns about it. I still have not seen a doctor that sympathized and confirmed any of my symptoms, I keep getting the “you have anxiety” or have been through a traumatic event and am coming up with symptoms. The numbness and tingling I have is new, and the eye pain has been consistent for the past year with flare-ups getting worse, its also so hard to wake up in the morning. My eye doctors seem to skim over my eye pain concerns as well, so I am seeking my 3rd eye doctor in the past year.

Thank you for listening! It sounds like we have had similar symptoms, I just want some kind of reassurance so I am trying to see a neurologist who specializes in MS and go from there… Because every time I type in what my symptoms with anything are all I get is MS.. MS.. MS…


gihan
3 days ago

It saddens me that doctors are just not taking you seriously. I had the same going to my local GP telling me I just don’t sleep enough and to stop skipping breakfast when I was worried about why I can’t feel my face and when I bent my head down I got a horrible electric shock pain/ pins and needles mix.

The problem is when doctors hear you talk with too much description about the issues you are worried about they immediately think you are a google hypochondriac!
I’ve been told off by a doctor for speaking with too much description. ha!

The eye problems they should never skim over as that is one of the main ones that makes living impossible. A ophthalmologist should take your eye pain into consideration. I had optic neuritis before and recently went for a glasses appointment as I was worried it was coming back. For them to find out some disc behind my pupil (not accurate my apologies!) is very pale and it is what optic neuritis does as the nerves are damaged. So now I have to see a ophthalmologist next year.

Since sadly these doctors seem to not be giving you a chance, have you ever tried to reach out to Ms Specialists? Do you know of any Ms society/ foundations buildings within where you live? They could give you some guidance and will definitely take you seriously.

You’re welcome! I know the feeling knowing something is wrong and people not taking you seriously until it’s too late. It’s the worst.
I really hope you get a solid answer! Being stressed about the possibility of ms unfortunately makes flare ups worse 🙁

Yes! Best to seek purely ms neurologists, ms nurses etc! Anything to do with ms!

If you ever need to talk, I’m here 🙂

Good luck with your battle! You will succeed with answers!


itsmewithms
3 days ago

MS is difficult to diagnose as many of the symptoms are also common to other issues and sometimes just stress. It sounds like you have plenty of that in your life without the stress of all this! 😉

The primary diagnostic method of diagnosing MS these days is through an MRI. As MS lesions can occur in different areas of the CNS (Central Nervous System) so the MRI needs to at least include the brain and the spine.

This is a good video from Aaron Boster that talks about diagnosis and covers the 5 things he looks at-
1 Your History
2 Neuro Exam
3 MRI
4 Lumbar Puncture/CSF (not always done or needed based on results of other tests)
As he says it is probably done in less than 10% of the cases as the diagnosis is so confirmed by the first 3 on the list. I have never had one done.
5. Other Dx, prove not other issues like Lyme Disease, metabolic issues, thyroid, connective tissue diseases such as Lupus

I had a friend with some symptoms that may were similar to MS but she actually had a benign brain tumor that once removed she was back to 100% and is doing great today.

Good luck! if you put “diagnosis” in the magnifying glass in the upper left you will see many posts for the topic-


rel12
2 days ago

Hi @srs424 ! 🙂

You do not sound crazy! I think we can all relate for those who are diagnosed, that the beginning of the journey was a bit crazy. It’s normal to think of this because of all of these symptoms and things happening to you right now. Just remember a lot of things have similar symptoms of MS. This doesn’t mean that the doctors should just ignore your concerns. I was in a bad car accident in college and I really thought my leg getting numb was from that, until I was sent to get an MRI and found I had a herniated disk. The doc was convinced that surgery would be the answer…he seemed to dismiss the fact that my results stated they found some abnormalities related to MS. I knew after months something was not right & luckily found a neurologist. After the MRIs I was diagnosed immediately. They found many number of lesions so I did not even have to do the Lumbar Puncture test. So always go with your gut and seek the answers you need! Continue to search for the right people in the field to help with this and also the financials.

Also, I am sorry to hear about your mom 🙁 I can only imagine how tough things are right now for you. It always seems like all bad things happen at once but it will all work out! Wish the best!

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