MS DIAGNOSIS

[Azoozy]

I have had numbness in my hands that since 2013. I could say the numbness increases and decreases, it increases whenever i get sick(e.g fever etc) . I have also had migraines since 2011 that used to last for for a month, i get them every year and they really bring me down. In 2021 i had an incident where my neck was a bit stiff and i couldn't easily look down. Before i knew, i blacked out for 3 seconds and my right hand got so numb that i couldn't even operate my phone with my hand.

The doctor treated me for meningitis initially. A later ran an MRI, and noticed i had some lesions on my cervical spine. And very few in the brain MRI. My neurologist sent me for a Lumber puncture which was one of the worst experiences ever. Oligoclonal bands came back Negative, he ruled out MS.

Here i am today with some numbness that has started in my feet. Ran another MRI last week, and hmm i have developed more lesions on my Cervical spine. And a few more in my brain.

At this point i am so worried anxious and confused. Could it be MS from all indications?

[CV97]

It sounds like you could use a second opinion from another neurologist. I would recommend a MS specialist, if possible.

Numbness is one of my primary symptoms. Most of my lesions are also in my spine with very few in brain. My spinal tap came back as "Pattern suggests peripheral inflammatory response", so that was not a positive result either. (Notice, peripheral, not central nervous)

I completed numerous tests and the neurologist I saw diagnosed based on the MRI/symptoms alone. (Technically, he decided before the MRI, but that's a different story!)

[Azoozy in reply to CV97]

So sorry to hear about your situation. How bad is your numbness and how long have you had it for?

[CV97 in reply to Azoozy]

I've learned a lot along the way from my initial ER visit with numbness from the waist down (started in feet and moved up). The ER on-call neuro who diagnosed me (before seeing MRIs) probably based his decision on having an episode with leg numbness a few years prior. That issue had been resolved with B12 supplements. Perhaps it was an initial symptom. Perhaps it was unrelated. There was no way to be sure by that point.No neurologist ever addressed the "peripheral inflammatory response" shown in the lumbar puncture, so there's that too. I still believe I have other issues that need to be addressed, but having MS & being overweight have given Dr's an easy out.

I did seek out a second opinion from a specialist at a prominent hospital in Chicago. He said I had "a touch of MS." Ha! Figure that out!

In the almost 7 years since my initially diagnosis, there have been more lesions, and it has been definitively confirmed as MS. Symptoms have increased, but are still manageable most days. I take one of the newer DMTs available in hopes of preventing new lesions and preventing progression as best as possible. Before MS, I was a "no medicine" kind of person, and now I'm all in if it makes me feel better.

The level of numbness comes and goes, and is usually contained to my feet/lower legs. Sometimes it's a little better. On days I have done too much, it's worse. I have learned that my arms/hands/face will tingle when I have done way too much for too many days in a row. I tried a medication to help reduce it, but it made my head feel worse, so I stopped.

IF your symptoms are due to MS and you get that confirmation, then you'd be eligible to start disease modifying therapies (DMT) that can help slow progression.

[Azoozy in reply to CV97]

What a scary experience. I mean what did we all deserve to be diagnosed with such a dangerous disease. I have an appointment with another neurologist next week, we will see how it goes from there. To everyone out there that has MS, please stay strong. Dont let it bring you down in any way!

[CV97 in reply to Azoozy]

Ah, yes, that question. I've asked myself that many times. The reality is - nothing. We didn't do anything wrong & it wasn't our fault. Maybe science will eventually have a definitive link and answer "why me." But it certainly wasn't caused by wrongdoing on our parts.

I hope you find swift answer, one way or the other, because living as somewhat-diagnosed is pure turmoil.

Feel free to message me if you need to chat!

[Frances_B]

I think you need to get an opinion from another neurologist - preferably one who specialises in MS. A negative LP is not a reason to rule out MS - while an LP can help with diagnosing MS if other tests are inconclusive, LP is not (despite what some people claim) a "definitive" test for MS - around 10% to 15% of people who are confirmed as having MS and who had a lumbar puncture will have returned a negative LP result.

[Azoozy in reply to Frances_B]

My goal is to get at least 5 different opinions from 5 neurologists. At least then things can get more conclusive from there.

[BettysMom in reply to Azoozy]

That would be a ridiculous waste of resources. Appointments with specialists are very hard to get nowadays and you would take five of those new patient appointments trying to get diagnosed with MS? MS is not THAT difficult to diagnose. There are criteria and if you don't fit the criteria, they cannot diagnose it. There are multiple causes of "lesions" on MRIs of the brain and spinal cord that are not MS. In the brain, the "lesions" are not random, they have to be in a pattern related to other structures in the brain. There are also multiple causes of numbness in the hands and feet. That pattern of hypoesthesia without other symptoms of MS over a 10 year period is more likely to be caused by something other than MS,

[Frances_B in reply to Azoozy]

I note that you've said in your original post that you have developed numbness again in your feet - a week after having another MRI which you say showed more lesions in your brain and spine - but you have not said what prompted your doctors to order another MRI - there must have been a reason, as MRIs are not ordered just to use up referral forms. So, what reason was given to you for the most recent MRI being done?

Re your statement that your goal is "...to get at least 5 different opinions from 5 neurologists" - that is just wasting time and money, and is likely to get you a well deserved reputation as a "doctor shopper". And as each one in your proposed succession of doctors finds out you have been seeing so many they are less likely to listen to you properly. As for saying "... At least then things can get more conclusive from there" - they probably won't, and you will then have an unfavourable track record (created by your own actions) of doctor shopping which you will find hard to shake off in the future - especially if one of the doctors you see earlier in your proposed plan gives you a diagnosis and you still go on making appointments with further doctors. And, as BettysMom has said, those appointments you use up for the sake of meeting some arbitrary "goal" you have decided upon, could have gone to people who have a more appropriate attitude towards their relationship with the medical profession.

[BettysMom in reply to Frances_B]

Well said. Thank you.

[greaterexp in reply to Frances_B]

So true. I'm so glad you brought this up. My spinal fluid was neg for 0-bands.

[NorasMom]

I agree with the others that you need a second opinion. The current MS criteria requires lesions from two different time periods, and it sounds to me like you have that covered. MS can't be diagnosed or ruled out on the basis of a single test. Unfortunately, they have to ultimately look at the big picture and see what's left after they rule out other diseases. It can be a very slow process, but that's also why you need a cooperative doctor who's willing to work with you to find the answers. Please keep us posted.

[kdali]

I agree with second opinion, but I think having a MS specialist review everything would be beneficial. They also diagnose things that mimic MS. They usually have fully booked schedules for months.

I hope you will let us know how your next appointment goes!

[sashaming1]

I think that there is a med (Steroid?) that can be given to you that temporarily stops MS symptoms which can be used to help confirm or rule out MS.

[BettysMom in reply to sashaming1]

No, it doesn't work that way.

[sashaming1 in reply to BettysMom]

I'm curious, how does it work? I had something like this done in 2016 to prove that my issues were not MS (which I have) related.

[ahrogers in reply to sashaming1]

I was given a course of IV steroids when first diagnosed and my neuro warned me it may not help the numbness I was having as it tends to be more help for motor symptoms. He was right, it did not help the numbness but I definitely have MS.

[kdali in reply to sashaming1]

I have heard of this trick! It's outdated now, like the hot water test.

[Frances_B in reply to sashaming1]

Steroids are not fast enough acting to be used for that sort of purpose, especially for MS. You might be thinking of one of the tests for myasthenia gravis - they give a drug which stops the breakdown of a chemical substance and if that eases the symptoms then the test is positive for MG.

"Edrophonium test- Edrophonium is a drug that prevents the breakdown of acetylcholine, allowing the clinician to understand your muscle response and whether the results are consistent with an MG diagnosis."

myastheniagravis.org/about-...

myasthenia.org/MG-Education...

[Godismerciful]

Hi I hope you feel well,. The diagnosis is very important when the illness is MS. I suggest you to visit a neurologist who is expert only MS. From 2013 to 2023 without treatment can cause more lesions on the brain and cervical spinal. Please, don’t take more time. I would like you make a good decision.

[ahrogers]

The unfortunate thing about neurologic symptoms is there are so many things that can cause them. My first symptom was foot drop when I exercised at high intensity for more than 40 minutes. So, of course, my solution was to not exercise for more than 30 minutes. Well, about 6 months later my feet went numb and my right leg didn't work right when I wore high heels. My PCP sent me to a neurologist for a peripheral nerve test. However, the neuro first conducted a complete history & neuro exam and said the peripheral nerve test would be a waste of time as my exam indicated a central nervous system problem. I think he knew it was MS based on symptoms and exam (reason listed for first MRI was transverse myelitis). The MRI confirmed MS as the brain lesions were in the typical location and orientation for MS. There were also lesions in my cervical and thoracic spinal cord. He ordered a LP and I agree it is a miserable experience. Mine was positive. Also had a visual evoked potential test that was abnormal. I feel I was lucky to get diagnosed so quickly and get on treatment soon after.

Hopefully your second opinion neurologist can eval your lesions and tell if they are in the typical location and orientation of MS or more likely a different diagnosis. There are other diseases with CNS lesions and similar symptoms, such as NMO.

Whatever you end up having I hope they diagnose it soon and that there is effective treatment.

[goatgal]

Get a second neurological opinion. There is something going on that needs to be investigated.

[GratefulNeeC]

Azoozy , first I pray 🙏 that you start to feel better, even if it's a bit at a time. Please try not to get frustrated, unfortunately, on our health journey's we are often times in the "fight of our lives." If I can make one suggestion - I urge you to research in area (maybe a little out of your area) Neurologist's who specialize in MS! Take all of past CD'S with you and discuss your symptoms. I saw six doctor's before I found the gem 💎 who I have and been treated with on diagnosed. Whatever is going on with your health, like myself all I wanted was: 1, to figure out what it was and 2, get put on a good course Disease Modifying Treatment! Please keep us updated and I pray you better and find what's best for you. NeeC

[alsorenson]

I had brain , cervical, thoracic mris 4 years ago. Lesions on brain and c-spine. Lumbar puncture test for O bands was negative. My neurologist did not completely rule out MS but said it was much less likely. A year ago with same battery of tests (I started experiencing continual numbness in my feet) there was marginal increase in lesions, but this time O- band test came back positive and MS was confirmed (although my wife told me 5 years ago she thought I had MS). Since then have been treated for PPMS.

My story in no way means it applies to you, but it is possible for O band test results to change over time.

I hope this helps. Good luck

[Azoozy]

Thanks all for the support i have received from kind hearts on this forum.

To add on, the last neurologist i saw that requested the brain and cervical MRI actually suspected NMSOD, apart from the MRI i also did a test for Aquaporin 4 Igb Abs which actually came out as normal.

So i would see her this coming week with all my results and see what the next steps would be like.

God bless you all.