MS Symptoms?

MSNik

Have you had any evoked potentials on your nerves? Have you been seeing a neurologist?
You said that all of the specific tests have come back negative..what tests have you had?

This does not sound like MS...possible Polyneuralgia, possibly allot of things, but MS doesnt present the way you are describing usually..

Tell us more about what tests and what type of doctors you have seen.

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RRMS- dx 05

friendly21

I'm seeing a neurologist. Neuro exam was normal. Having an MRI of brain and c spine next week. Having blood work done including CBC, metabolic panel, testosterone, ANA, and CRP.

The main issue I'm having right now is visual sensory overload in places like the airport. It's like I can't process fast enough. Hoping for the best but my mind keeps going to MS.

ladybud

I think your symptoms could be consistent with lupus since you have high titer ANA results. Lupus presents in such a wide variety of ways, and it often does not show any specific autoimmune antibodies other than ANA. Since some of your symtpoms are muscle/nerve related, I would suggest some additional lab tests to be done. A sedimentation rate shows chronic inflammation if elevated, (high CRP shows acute inflammation),a CK and aldolase enzyme can show muscle inflammation, sometimes present in lupus (myositis), Vitamin B12 and folate levels, low in peripheral neuropathy associated with autoimmune diseases, a Complement 3 & 4, low in autoimmune disease. These are all blood tests that can be done in one draw. A rheumatologist should be consulted as well to thoroughly check out the other auto antibodies that can be present and give clues to diagnosis. There really is no need to repeat an ANA since you have had 3 positive ones. The symptoms and lab evidence can take months to years to develop, so periodic repeats can be helpful. Lupus and similar autoimmune diseases are treatable, so it's worth pursuing this. I would review the many symptoms and see if you have others, and relay any family history of autoimmune disease to your Dr.

friendly21

Update - My MRI of my brain and C-spine on a 1.5T was clear. EMG/NCV was also clear. Still worried that I could have MS as my thighs continue to burn and feel like my visual processing is slow. Hopeful that 2 clean MRIs, 1 in 2013 and 1 in 2020 make it unlikely... I still have the sensory nerve pain in my thighs and the only finding on my neuro exam were "brisk" knee reflexes although Neuro said it wasn't pathalogical since they didn't flair out, didn't clonus, and were symmetrical.

Do I need new MRIs of T and L spine too?

friendly21

Update -

I had an MRI of my brain, C, T, and L spines which came back clear. I still have the burning/squeezing predominantly symmetrical in my thighs which seems to occur almost every day although comes and goes. It's especially painful when I'm wearing long pants. Sometimes I have a little burning in my cheek. Generally have bad fatigue as well.

This is my 2nd round of MRIs (1st in 2012 and 2nd in 2020). Although no lesions have shown up on the imaging (1.5T), I'm still very concerned that this is MS and that the lesions haven't been seen yet. It seems that it can take years for someone to get diagnosed and have clear MRIs for years.

Any thoughts on if I'm still at risk of MS? Anything else I should be doing....??

ladybud

I responded once before to your post. It’s always good to keep an open mind on the possible causes of symptoms and check out everything that could be responsible. If you’re focused strictly on MS you could spend a long time going down the wrong path, not getting a diagnosis or treatment that might be helpful. It is common to have a n autoimmune disease with just a positive ANA and no other specific antibodies, but the other tests I mentioned can be very helpful in providing clues. Please consider seeing a rheumatologist and getting these other blood tests done. What have you got to lose?

friendly21

Thanks Ladybug.

I went to a Rheumatologist in June and went through a battery of autoimmune blood tests. The only positive result was the general ANA, everything else was negative.

My fear is that I have MS but haven't met the MRI diagnostic criteria even though I've been through 2 comprehensive MRIs (once in 2012 and once in 2020). I would hope that two scans would rule it out but seems like there's so many unknowns.

LBCgirl

Hey friendly21,

Your symptoms sound an awful lot like chronic/advanced-stage Lyme Disease. Lyme Disease has sadly swept the nation (and lots of countries) and often comes with co-infections. From 1 tick bite here in GA I got 3 strains of Lyme and a co-infection of mycoplasma. Fortunately, I got the circular rash (erythema migrans), which alerted me to the possibility of Lyme, but not everyone sees/recognizes the rash or even gets one.

Later-stage Lyme almost always includes joint pain or swelling and nerve tingling and then can get worse from there, including nerve pain, palsy, vision issues, voice issues, brain fog, dizziness and the list goes on. To add insult to injury, the standard testing (ELISA and Western Blot) yield tons of false negatives. A lot of times the standard treatment (short-term antibiotics) is not sufficient either.

What you really must do for proper diagnosis and treatment is see an LLMD (Lyme Literate Medical Doctor.) Register for free on ILADS.org and do a provider search in your area. In this day and age you can probably do a virtual appointment if you don't have a practitioner nearby. They will likely use iGeneX Labs or even Armin Labs in Germany. Whatever you have to pay is worth it for the hope of healing!

Praying for you