New here-going to MS clinic this week

[Qt314grl]

My Qs: anyone here diagnosed with normal lumbar puncture? Or misdiagnosed with migraine before MS diagnosis?

This seems like a lovely community. I'm just going to jump in as I have my first MS clinic appt this week. I have seen two neurologists that say my mri lesions are migraine but my GP said no way and set me up with the Vanderbilt MS clinic. After waiting 4 long months I finally get to go!!

2013-entire left leg goes numb for a few minutes (like completely dead from hip to toe). Then very weak and numbish for a few days after. Stroke workup and hospital stay. Lesions on brain MRI but neuro says atypical migraine.

2014-"attack" in my feet, felt like they were on fire!! Extreme fatigue. Slowly got better then I got pregnant and pain was much better.

Late 2015-pain in feet gets worse after having my baby boy. Same neuro say diabetic neuropathy...except I'm not and have never been a diabetic. I go to pain clinic and start Lyrica (25mg) and it worked like a charm. EMG was negative for peripheral neuropathy...so it's either small fiber or central neuropathy.

May 2017-pain and numbness in feet flares really bad. Up the Lyrica to 300mg 2x a day. Works ok for a bit then not as well. Add in cymbalta and works ok for a bit. Get numbness in left hand and a patch of skin on my right forearm that feels desensitized. Extreme fatigue. Cognitive issues. Got desperate towards end of June and my GP admitted me to hospital for 5 days of iv solumedrol. After a couple of weeks finally feel able to function again. Feet still bad though and maxed out on Lyrica and cymbalta. See new neuro and he adds in trileptal. Spine MRI and lumbar puncture both NEGATIVE to my GPs surprise. Neuro sets me up with rheumy at Vanderbilt as he says maybe it is something autoimmune in nature. Rheumy is like "why are you here?" Orders a few tests that all come back normal. Says going to MS folks seems right to her too.

While waiting for my MS appt, I Go to spine Dr and while my l5/s1 is pretty much fused, there is no spinal stenosis or explanation for feet pain.

GP sends me to pain clinic who gives me baclofen and nucynta.

So now I am on 5 different pain meds!! And still not very controlled.

Last week my symptoms ramped up again after a bout of strep throat. and even worse when I got a cold over the weekend.

My mom has MS but her symptoms are completely different from mine.

I'm hopeful that MS clinic will diagnose me so I can start treatment to prevent flares. I'm also thinking about a spinal cord stimulator for the feet pain.

Whew. If you got this far-please accept some virtual cookies 🍪!

[Morllyn]

I hope that the MS clinic can give you some answers Qt314grl .🤞(Ha ha, the emoji is hard to see but is “crossed fingers” I promise!) Oh, and nice to meet you!

[Jesmcd2 CommunityAmbassador in reply to Morllyn]

Morllyn 😄😄😄

[Qt314grl in reply to Morllyn]

I saw in on my mobile thanks!

[Jesmcd2 CommunityAmbassador]

Good Morning 🌞 Qt314grl is it to early for cookies 🍪? 😀 😳

Sounds like a rough go of it! But congrats on your baby boy!💕 We love babies💕😊

MS mimics so many other things from what I understand, that it can be hard to dx. I was also Dx'ed with migraines at 1st, from a Neuro who only wanted to give me botox.😐 It was an arthritis Dr that actually saw my MS lesions.😄 Go figure.

Going to an MS Clinic is the best thing for you! I have never had a lumbar puncture, but others have, and will be able to tell you more about it!

Welcome to the Family! Sorry for the reason😕

Love the cookies 🍪 what kind are they again?😀

Jes 🌠👻

[Qt314grl in reply to Jesmcd2]

It is never too early for cookies!

I have really checked off every other box my doctors can think of as the cause of my symptoms other than some sort of progressive small fiber idiopathic neuropathy. Which I understand can be diagnosed with a biopsy. I don't know, I'm just tired and really want something to treat!!

[jimeka]

Qt314grl cookies? Chocolate chip..? Do I have to share? Hi , welcome. I am sorry that your first neurologist gave you the run around, I think you did the right thing by getting rid. Hopefully the clinic will be able to give you some answers. Let us know how you get on, blessings Jimeka 🦋 🌈

[Qt314grl in reply to jimeka]

Thanks! You can have as many cookies as you want!

[Fancy1959]

Qt313grl, it's Fancy1959. I'm glad you found us and I want you to know that you have found a safe place to call and ask questions, voice concerns, or simply speak to someone who truly understands. This chat room is full of some of the most caring and compassionate people I have ever met.

It sounds like a MS has taking you by storm. You have quickly found out that there is never a dull moment with MS and I am sorry that you had to join our family yet I'm glad you found it if that makes sense. All of us in this chat room have had experiences of miss diagnosis, bad testing, good testing, and simply feeling lost and alone and scared to death because of the diagnosis! Take a deep breath and realize that we are here it's only a post away and that you do not walk this path alone. There are many of us who are right by your side and all you have to do is reach out and we will grab your hand and help you through whatever MS throws your way.

I see you've already experienced MS exacerbations that can be caused by anything from a lot of stress, to infections in our body, too getting overheated, getting too cold, etc etc.

Once you go to the MS Clinic and they explain things and they diagnose you solidly with facts please contact us back so we can talk to you more specifically on what they found. Until then please take care and know that together we are stronger. I look forward to speaking to you soon. You are now part of our extended family!

[Qt314grl in reply to Fancy1959]

I do feel like I've been caught in a bad storm for the last few months. No one seems to understand that the fatigue alone is ridiculous. Much less the pain I'm in. Pity party for one, right here!

[Kenu]

I went blind in my right eye overnight and eye doctor said metal saving in my eye. Two days later same. My Uncle called me on Sunday and gave me his eye specialist. Called and met me at hospital and did his thing. Left room, came back ten minutes later and said I had appointment at Moran eye center tomorrow at 10:am. Went to appointment and doctor ordered spinal tap and MRI and MRIShowed lesions and the spinal tap confirmed. Eye sight came back after six weeks, thank God. Everyone seems to have different symptoms 💩 Stay strong 🙏

[CalfeeChick CommunityAmbassador]

Wow, @Qt314grl, You have been on a roller coaster. So glad you've jumped into this MS Forum. You are very welcome here and are free to ask questions, make comments or just say HI. There are many here with so much caring and wisdom. I am so glad you are going to MS Clinic + MS specialists. They are the best. MS is very difficult to diagnose. Even after 15 months, my MS specialist is hesitant to diagnose the 20+ white spots in my brain as MS. They have not changed shape, no new ones. The lesions on my thoracic spine are MS. To answer your first question, my spinal fluid was crystal clear, no markers for MS whatsoever. My first non-ms specialist saw my first brain MRI, said you have MS and was going to start me on Tecfidera, even though I am JCV positive. You'll learn about that here too. What made me go to an MS specialist, was the above info and he just said "Don't get so upset, you've had a long life" as if he was just writing me off. MS Specialists are so great and up to date on care and treatments. I was fortunate to be accepted at UCSF MS clinic by one of their top docs. Be sure to write down questions, information from a journal if you keep one, which is a good idea, take a relative or friend with you to listen to everything the doc says..I felt like a deer in the headlights, overwhelmed by it all.. Keep on coming back here.. Lynn aka Calfeechick

[greaterexp]

Qt314grl

I'll gladly accept some of those non-fat cookies! Thank you!

Getting a clear diagnosis is sometimes quite a challenge. I'm so thrilled you are going to an MS clinic. Tests results can be so fuzzy. "Equivocal" is a term we hear a lot. I had 2 negative CSF tests 20 years apart, but the lesions and clinical presentation are clear. Others here have also tested negative for "o-bands." I can't fault doctors when there is no one definitive test for MS, but rather numerous tests that rule out other issues or point toward MS. Our symptoms are a crazy mish-mash mess, and no two patients present the same.

None here wanted the diagnosis, but it is a relief to know what's going on, put a name and explanation to what we feel, and then feel like we have a direction in treatment. Calfeechick has some excellent suggestions about preparing for your first visit.

Please tell us how your visit went and what you learned. We care about one another here. I'll be praying for clear answers!

[Qt314grl]

Thank you so much! It's good to hear there are others with negative csf!

[tenessa24]

MS diagnosis from brain lesions and neurological symptoms. I’ve had 2 LPs, both negative. I go to MS Clinic at university of Michigan hopefully before Christmas! Keep us updated on what they figure out and I’ll be praying for the MS Clinic to be the clarity you need. Best of luck!