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My doc is confusing me, it might be MS?

Hi all.
Im 28, I've had symptoms for years that I thought were just "normal". Turns out, it's not normal? Lol

So I get dizzy a lot, lose balance while walking and run into door frames. Left side of my body goes numb randomly. My vision gets fuzzy or left side of left eye vision goes black (that one is new). I have stabbing pain in my back, and my neck. I'm sure there's more but I can't think right now (oh and my memory is horrible. I can be talking and forget what I'm saying two words in and then stop talking altogether because I forgot I was trying to say something.....?)
Over the years I've asked doctors about it and they've either (literally) told me I was stupid and didn't know what I was talking about, or that it was just in my head.

A couple months ago my boyfriend told me it sounded a lot like ms to him, which amazingly I'd never even heard of ms before that, so I asked my doc and she actually took me seriously and got me in to see a neurologist.
Neurologist seemed to think it was a big possibility after seeing and talking to me so scheduled MRI.  Insurance would only approve brain MRI.

Yesterday was my follow up where he thoroughly confused me....

They found one lesion on my brain, and "1 is not sufficient evidence" to say it's ms, so they're gonna see if insurance will approve the other MRI now. If they find another on my spine then they'll do spinal tap to confirm.
My boyfriend was with my at my follow up and even he was confused with my doc because he kept contradicting himself. One min he's saying we need another to confirm it's ms and if not then it's def the beginning of ms. Next min he's saying it's low chance of being ms. And then he said something again that made it sound like he believe it IS.
What else could have caused a lesion on my brain? And what else would cause my symptoms? Neurologist asked me about migraines but I don't have them! I rarely have even a small headache!!!

My doctors always give me perfect bill of health, my blood tests are all perfect....


Please somebody give me input :"( I just want to know what the heck is wrong with me!
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Avatar universal
I hope you'll take another look at the condition I mentioned earlier called May-Thurner Syndrome. It usually affects the left leg and can cause pain and numbness. It's a condition that is usually diagnosed during pregnancy due to rapid weight gain causing compression of the left iliac vein. This would explain the worsening of symptoms during your pregnancy. From my experience with May-Thurner Syndrome, if you don't develop blood clots or your left leg isn't swollen 3 times the normal size, almost no doctor will think of this condition. I know another user mentioned MS. This condition is often seen in MS patients. One doctor did a study of patients with MS and found that 70% had May-Thurner Syndrome. Considering it's an anatomical variant usually seen in around 20-30% of the population, this number is extremely high. Hopefully you'll get to an Interventional Radiologist and get checked for this condition. If you have it, a simple stenting procedure could cure almost everyone of your symptoms, all symptoms that I've had.
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I have my second MRI tomorrow and neurologist appt next week.  If they don't find anything of concern on there,  I'll ask them about this.
I was told yesterday by my regular doctor that my neurologist is really really good,  and extremely smart  (too smart,  she said lol) which made me feel slightly better...
And I know most people hope that nothing is found because they want to be healthy, but id rather they find something so I have answers.
Thank you so much for commenting on this.  I appreciate it very much.  
Avatar universal
Hi, Organika. I'm sorry you're going through this.

I went through something similar years ago, with symptoms (that I ignored) beginning in my mid-20s, and then becoming life-affecting and very limiting in my early 30s. Doctors initially suspected multiple sclerosis and then ruled it out through tests. I wrote a lot about it here at the time, and people were very helpful, so I will try to return the favor.

From what I know (I'm no expert!), your symptoms do sound rather consistent with MS. Whether you have MS or not, with your symptoms you should expect that a lot of doctors will contradict themselves and confuse you, and you may end up encountering some who won't even take you seriously. If you do, just move on to another doctor. You don't have time to waste on any medical professional who suggests everything is due to anxiety or totally unknown.

I learned along the way what generally constitutes an MS diagnosis. (It's possible the criteria have changed since then, but here's what I learned.) There are several primary indicators used for differential diagnosis:
-Neurological problems that are all on one side of the body, either the left or the right, as well as certain "telltale" symptoms, such as sudden blindness/black field of vision.
-Episodes of severe symptoms that often become less severe as the episode passes. (This can be variable, as there are several manifestations of MS.)
-An MRI showing brain or spinal column lesions.*
-A spinal tap that shows oligoclonal bands in the spinal fluid, evidence of nerve demyelination.

From this, it sounds as if your symptoms do sound pretty typical of multiple sclerosis--although they could be caused by something else, as the first commenter suggested.

Your doctor's comment that a brain lesion suggests MS but isn't proof of MS isn't actually self-contradictory. Part of the diagnosis of MS involves tracking symptoms and evidence over time. When a brain lesion is found, repeated MRIs follow months or years afterward; if more brain lesions follow, then this is considered partial evidence for MS. The reason more lesions have to show up is because MS is a progressive demyelinating, neurodegenerative disease, but brain lesions could be caused by something other than MS, such as physical damage from an impact or another cause. So one lesion could have been caused by anything at all. One lesion followed in a year or two by more lesions is evidence of a degenerative disease.

There's unfortunately no quick diagnosis for a lot of neurological diseases. Here's a short summary of my case, just as an example of how maddening it can be:

Mid-20s: Intermittent hearing loss, numbness and tingling in my feet, fluctuating vision.
Early 30s: (All fluctuating) Joint pain, mental confusion, imbalance, poor coordination, double vision, episodes of vertigo, cluster headaches, severe nerve and joint pain, skin pain and lesions...that's just some of it.

Doctors I saw included: Two primary care doctors, two neurologists, a neuro-ophthalmologist, a rheumatologist, a psychologist, a psychiatrist, and various others.

Tests included: CBCs, blood tests for infectious diseases including HIV, syphilis, Lyme, and more; hormones and other tests, three MRIs, including brain and all three spine segments, EKGs, two EEG/NCVs, visual and auditory evoked potentials, and various others. Some of these were torture.

Diagnoses included: 1. You're perfectly healthy--it's either anxiety or possibly a more severe mental disorder. 2. Blurry right optic disc margin and cataracts (at age 33) with no explanation. 3. Cluster headaches. 4. Dupuytren's contracture. 4. Meniere's disease--which an ENT specialist told me would cause full hearing loss and potential imbalance to the extent I may not be able to walk, and that this was incurable and irreversible. 5. Lyme disease with Bartonella and Babesia co-infections. 6. Mast cell activation syndrome.

I am currently being treated for 5 and 6 above.

One neurologist told me that I am perfectly healthy and should "take a nice, long beach vacation, and if that doesn't make all your problems go away, then you should find a good counselor." I did end up going to a psychiatrist, who I have now seen for six years and who has helped me a lot, but she's helped me cope with my illness, not deny it. Actually, because of similar symptoms, she referred another patient for a Lyme test and that patient turned up Lyme positive and her anxiety and depression are improving with treatment for Lyme.

I'm not suggesting that you have Lyme disease. (A lot of people do and don't know it because the tests are so insensitive, but if all your nervous system issues are relegated to one side of your body, then that does sound more like MS than Lyme, which seems to cause a more random roaming of symptoms.) But I am saying that you need to be your own health advocate and make sure that you are taken seriously and that you have talented, curious doctors who are interested in finding out what is wrong with you and how to help, if possible.

I will note that I thought (and was told by doctors) that I had almost every possible test, but my Lyme doctor gave me a few others that proved to be of great importance. Most notably for me, these are the c4a complement and tryptase blood tests. My c4a complement was WAY out of the normal range. This test looks at part of your immune system complement, and when the levels are high, it means that your blood is full of inflammation and this test is *usually* suggestive of an active Lyme disease infection or exposure to black mold. I had both. I moved and went on antibiotics, and my c4a went down to normal range...before spiking again. You could ask for a c4a complement blood test to rule out an infectious cause of your neurological problems. Most doctors probably would not order this test for neuro issues.

The other test, tryptase, will indicate if you have a mast cell activation disorder. MCAD/MCAS is also the result of an overactive immune system; in this case, it's when mast cells degranulate too easily and flood your body with histamine, causing targeted or general allergic reactions. People with MCAD/MCAS usually get hives, have breathing problems, heat sensitivity and other telltale symptoms that you didn't describe--so this probably is not an issue for you. I mention it only for two reasons. First, in my case, it's yet another case of doctors needing to continue to investigate and not just write a patient's experience off to anxiety or "I dunno." And secondly, because I've learned that Lyme disease seems to trigger mast cell disorders in some patients when Lyme isn't treated fully and promptly. I had neurological problems for at least five years before any of my mast cell-type problems surfaced, so I assume this is what happened to me.

Good luck with your diagnostic journey.
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Thank you for your comment.

Ive had so many blood tests and doctors always give me a perfect bill of health.  
Today has been a really bad day so far.  My left leg has been hurting so bad and is numb. When I stand up it's like,  I know i have a leg there,  and I'm standing,  but i can barely feel it and it's like it's not really there. Does that make any sense at all?:(

I was having symptoms starting  a few years ago, but they have gotten much worse since having my baby girl who is almost 2  years old now.

I'm sorry I'm rambling.  I feel awful today and just wish I knew what was causing this :"(


Avatar universal
There may be a good reason why your symptoms are almost all left sided. There's 2 rarely diagnosed left sided vein compression syndromes that can cause all of your symptoms and they are frequently seen in MS. Left Renal Vein Compression (Nutcracker Syndrome) and Left Iliac Vein Compression (May-Thurner Syndrome) are 2 conditions that are being diagnosed in MS and are the most likely cause of Chronic Fatigue Syndrome as well. I recently got diagnosed with May-Thurner Syndrome and can tell you it cause all of your problems. Nutcracker Syndrome is a similar one and many of the symptoms of overlap.  After I had a stent recently for this condition, almost overnight all my problems were gone. Here's the symptoms I was having;

Fatigue
Anxiety
Depression
Cognitive Dysfunction
Memory Problems
Balance Issues
Back, Leg, Thigh and Abdominal Pain
Difficulty Breathing

My friend has a support group for these conditions. Private Message me if you would like some more info as these conditions are not easily diagnosed. A Vascular Surgeon may be a good doctor to go see. Hope this might help!

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I'm sorry I'm just responding.  
I would love to know more about those conditions.
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