Hi - has anyone had strange symptoms (e.g., mine are pins/needles, migrating pinching sensation on skin, numbness of hands, itchy scalp, sharp joint pain, electric shock sensation on chest, sharp head pains, sharp stabbing pain in middle of back near spine, cramping in foot at night, feeling like walking on rubber bands at top of foot sometimes, heart palpitations) and subsequently got tested for MS (brain/spine MRI, blood work, and lumbar puncture) only to have that all be negative but then sometime later (a year or more) get retested and then the lesions show up (or other positive results)? I ask because I've had these strange symptoms (most in the last year, but the electric shock sensation has been happening for about 10 years) and the only "abnormalities" have been an abnormal mild diffuse cord signaling (spine MRI) and today elevated prolactin levels. No lesions, bands, or anything else suggesting MS. My concern, though, is that the lesions will eventually show up on an MRI down the road. Wondering if this has been the case for anyone here. Thanks for any thoughts on this.
Early signs before diagnosis?: Hi - has... - My MSAA Community
Early signs before diagnosis?
Yes! I went through several years of trying to find out what was causing my issues and finally after 4 years I was diagnosed with PPMS. Several MRIs in the beginning showed nothing. I went to some of the top specialists in US and they didn’t see anything. Hopefully you will receive an answer to your questions soon. Gabapentin has helped me with the tingling, electric shocks, and spasms and I rarely experience any of them. ( BTW if you are later prescribed gabapentin the key to success for me was to increase dosage slowly every 5 days. You’ll likely feel like you are in a coma otherwise.😉) I hope you receive a diagnosis soon!
Thank you so much, Graip76!! I will ask for the gabapentin because the electric shock sensation can be so severe...thank goodness it lasts only seconds but it is unnerving. Did lesions eventually show up on an MRI for you? Thanks again for your note!
Yes lesions did show on the MRI. They didn’t show in January 2018 but definitely were there in December 2020. ( The first neurologist that I went to told me I was too old to have ms! 🤔🤣)
Good morning. There are several long discussions here about Gabapentin. While some have great results, others have extreme new symptoms. It’s controversial - in my case it exacerbated neuropathy, leg cramps, and most disturbing, my cognitive abilities. It was prescribed to me by a general neurologist early in my treatment, before diagnosis at 67 years. Yes there are outliers. As there are hundreds of symptoms, there are increasingly more treatments available (oh we live in fortunate times). Talk to your trusted MS doctor. The journey is a challenge - I wish you the best.
Jesselespaul. I too, had the same symptons with Gabapentin and actually became bed ridden for 3 months. I've never fully recovered.
So sorry to hear that bettlebug! I hope you are doing better 🙏
Thank you. I strive everyday and take no meds now other than Cymbalta. It's hard but my Neuro retired and my husband died. The Lord gives me hope.
I hope you found a new neurologist?
No, I've tried 3 but the last one told me I was too old. I'm in Tx. and my husband always drove m to the Medical Center for my initial Neuro but I can't drive myslelf in all the heavy traffic to the Med Center (about a 45-60min drive) from where I live and can't find one locally. Thank you Cas85.
Too old for what? That's a terrible doctor for sure! I'm sorry you have had that as a response. Are there transportation services in your area? My mom lives in Ohio and has a service (not Uber - something else for older folks) that takes her places.
I’m in Austin - we have MetroAccess that drives me to and from doctor appointments, really anywhere in the Austin ETJ. Also I have DriveASenior which does the same. Can I help you find some help?
Oh, that would be wonderful! How do you get to MetroAccess place? Ours is not close by. BBut in Houston you would think there's got to be something. Maybe I just haven't looked enough. The one thing is I'm living on SS, my husband did not leave a will. His was a very unexpected death (brain aneurysm).
I’m so sorry you lost your husband. Let me look around the Houston area for you. Be right back…
oK - Google Transportation for Seniors Houston. There are actually choices of organizations that can help you. They pick you up at your home, go where you require, then come back and take you home. Our MetroAccess here come to my door. Whatever kind of assistance you need is available. Check it out! I live alone too, get Hot Meals on Wheels, deliveries from Central TX Food Bank, even trips to grocery (HEB), church, even shopping. SS here too….Takes planning and patience!
So sorry! It’s so challenging this journey we’ve had handed to us. I trust both my brilliant MS Mulva clinic team of doctors and the Lord who trusts that I can handle this challenge. Sure can be inconvenient!
❤️🙏
Thank you for sharing that - that's good to know. I've been on low dose naltrexone for the nerve pain but it doesn't seem to help a lot with that but does help me sleep better.
There are more tests that are usually done before an MS diagnosis like an evoked potential test, memory tests. You might want to see another neurologist for a 2nd opinion. That said the symptoms in your arms & hands can also be just spinal stenosis related. You might want to see a neurologist that deals only with the spine. I did & found I also had stenosis of the spine in L2-L5 & C5-C7 which was causing pain & numbness in my hands. So a lot of the things we think are MS related actually aren't. It's very frustrating! But the Drs we see can make a big difference in diagnosis. When I was diagnosed 18 yrs ago I had 9 active lesions on my brain & 5 in my spine. So over the years I've learned for me, what is MS & what isn't. Right now the MS is in remission & I haven't any symptoms, praise God! I hope you can find answers🙏🙏🙏
Thank you! That's helpful to know....I did have some spinal stenosis but I should see if that can explain what's going on.
I don't want to discourage you, but my consistent symptoms started in 1980. MRI's weren't available in my area until around 2003, and they showed nothing until 2020. I don't know whether to chalk it up to weak MRI equipment, misread results, or the possibility that my lesions kept healing themselves until there was too much damage occurring in the same places.
When I finally got my diagnosis, the neuro felt that the old lesions were older than my last MRI, which had shown nothing. Based on my own personal experience, having clear MRI's does not necessarily mean you don't have MS. Don't give up!
Cas85, MS has multiple symptoms that varies widely from person to person. I have had the numbness and tingling in my hands and feet since the beginning. Gabapentin has helped me on that too just as Is Graip76 said it helped her. Try to take a deep breath and relax because the one of the worst things on MS is stress. Talk to your primary care physician and tell them your symptoms if you haven't already and get them to run a barrage of tests to rule out certain other possible answers to your symptoms. If your primary care physician still thinks it's neurologically related get a second opinion from a dfferent neurologist. This time find a neurologist that specializes in MS.
Please keep in touch and let us know what you find out. Any questions you have feel free to post and will answer them and share our common experiences with you the best we can. Until then please take care and remember together we are stronger. Fancy59.
Thanks so much Fancy59! It's been a super stressful past year because it disrupts my life sometimes and not knowing what's happening is anxiety producing. I will ask if I can get the gabapentin because the low dose naltrexone isn't helping with the nerve pain so much (though it helps me sleep well).
Hi,My first symptoms were started feeling electrical shock all around my abdomen, deficulty doing number 2 toilet.
Many of the symptoms you described are associated with MS. I consider myself lucky I was diagnosed soon after I started feeling numbness, tingling, and stiffness on the left side of my body. I thought I might have had a stroke. My doctor immediately referred me to a neurologist. Who performed all the test (MRI, blood work and the dreaded lumbar puncture; which I will never voluntarily have again) to determine if I have MS. She was able to confirm that I had MS on my first visit. MS mimic many diseases. Take it one day at a time and try not to stress over what you might have. Stress intensifies MS symptoms. Continue to seek medical attention for all your symptoms. Just don’t stress about. Stressing and worrying creates anxiety and depression. And I don’t want you to experience any. While you are on this journey remember to take God with you. Speak life and healing over yourself and never stop believing 🙏🏾📖✝️❤️🧡
Thank you, stompoutms! I now - it's easy to worry a lot about this, which I'm sure is making things worse for me, whether it's early-stage MS or not. Thank you for your note and support! 🙏
Hope you get resolution. The only thing that popped out to me were elevated prolactin levels. I don't think that is Ms, female hormone. Our bodies are so intricate. May your dr unravel
Nope. My early signs were strange vision issues and the Eye Dr. said my eyes looked fine. Then I had a spinal tap and then a MRI which confirmed MS.
I started to drop things more often than usual. then the Lhermitte's sign and MS hug started. That is what motivated me to see a doctor.
hi. Before I was diagnosed I had pins and needles. I rarely do now. Avonex did well with pins and needles. Now I am numb most of the time.
Hello,
I had numbness that started in my feet and slowly progressed all the way up both legs and to my mid section. I had nerve conducting tests that showed nothing and I asked for an MRI. Even though there were lesions and activity nothing was done immediately. This all went on for about 2 1/2 months. I knew it wasn't right. In retrospect I was also very fatigued and sick but didn't know it becuase I worked so hard and was also busy with so many things. So, near the 3 month period I woke up on a Sunday morning with no eyesight in my right eye. That brought me to the emergency room and 3 days and 3 attempted lumbar punctures later I was diagnosed. I knew all along it was MS just needed to convince the doctors. Anyway, for me it was a relief to know what I had so I could try and get well and prevent worsening symptoms over time. Hope this helps.
It is very difficult not knowing what you are dealing with. If you are up to it, keep
trying to get an answer so that you can help yourself heal. Take care!
Hi everyone - my symptoms have gotten worse - more strange pains in my hip and shoulder joints, pain on top of my foot, strong pinching sensation on skin everywhere (acute and happens in different locations), tingling, arms feel weak. (Does anyone have acute joint pain like this?) I feel like I must have PPMS because I've had symptoms consistently since last Feb. (though the electric shock sensation on chest for 10 years). It's horrible to feel like this and just wait for the lesions to show up. I'm sure that's what's going to happen since the spine MRI had "abnormal cord signaling," which is strongly associated with a demyelinating disease. I see my neuro next week. Does anyone have insight on how they would decide that someone has PPMS vs. a different type? Would symptoms not going away fully (like mine) be indicative of PPMS? My heart goes out to you all...this is painful and scary.
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