MS without lesions? Is it possible?
Posted , 39 users are following.
Hey all.
I've posted all over this site for possible reasons such as fibromyalgia and neuropathy; and spine; and MS; and now my neurologist has me back to MS.
I always felt like I matched the symptoms anyway (vertigo, blurred vision, gait disturbance, electric shock) but after a years worth of testing, this is my last stop - spinal tap.
There have been no lesions on my brain or entire spine and my neuro told me today that she is basically lost. She said that I'm in the age group for MS so that's what she's looking at.
I'm disheartened as its been an extremely tiring and long year. I've had so many tests.
Does anyone else have experience with no lesions but possible MS? I have no one in my family with MS either.
Any input would be appreciated. Thanks.
3 likes, 71 replies
bic24773 Hayhue
Posted
I'm afraid I'm in a similar situation, i do have an ms diagnosis but my last scan didn't show new lesions yet I'm suffering ms symptoms, i ead told I have spinal stenosis facet joint disease and I already had cervical spondylosis, it's so distressing. You need a firm diagnosis even when it's me it's still a sort of relief because you then know and can plan around it etc. Good luck. I'm beginning to think the neurologists don't know everything.
mary69941 bic24773
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carol020107 mary69941
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Mary69941, please dont settle for "treating the symptoms ". As time goes on, you'll want a firm diagnosis. I have been thru what seems like every neurologist in town. Ive even changed my insurance company several times just to see a different neuro. You need to feel like they are looking out for you and doing everything possible to find the cause of your symptoms. My first guideline, personally, was the neuro had to believe that M.S. was possible without lesions and I had to feel like they truly cared about my health.
I hope this he lps you. Blessings to you.
mary69941 Hayhue
Posted
carol020107 Hayhue
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Hello Heyhue, I can certainly relate to your frustration. I was diagnosed in 2007 with M.S. with oligoclonal bands in my spinal fluid.
I gwt MRIs/MRAs done regularly ( important they use a 3T machine) and in 11 years lesions showed up only once. I was told it was a special type of machine they had. It becomes very frustrating when your body is demonstrating all the "typical" M.S. symptoms , but because the MRIs come back clean, the drs want to discard your diagnosis and repeat the same tests over and over. May I say, please stay as positive as possible and stay strong. You are not alone.
Guest Hayhue
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For everyone on here who has symptoms of MS, please consider this possibility. I have suffered over the past year with joint pain, headaches, brain fog, stomach pain, chest pain, hair loss, light sensitivity, static shocks, ice pick pain, weakness and fatigue. I don't have every symptom at the same time,they seem to come in waves. I was recently diagnosed with CIRS or Biotoxin Illness. It has many of the same symptoms as Lupus and if left untreated long enough can lead to Cushing syndrome or MS. It took me a long time to find this as all of my blood work came back negative and I was told I was healthy. Once I finally came across this I found there are not many doctors who treat it. I am hoping this helps any with a mystery illness or who is struggling to find an answer.
bic24773 Guest
Posted
I'm glad you got some resolutions. Are you USA or UK
I don't think UK would look at this diagnosis. I've had all those things and I have an Ms diagnosis but neurologist says I'm not in a recurrence. Just didn't two days in the emergency/accident and emergency and have a bells palsy diagnosis. I've been suffering neuralgia and facial tics for days along with phantosmia but he says it's not my ms. It's so depressing. Thank you for your post. Wishing you well fir the future
Lorraine
trisha58505 Hayhue
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mary69941 trisha58505
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Johanna91 Hayhue
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I saw a neurologist and had my first MRI - results came back clear. I saw my neurologist to go through my MRI with me and he basically said i have all of the symptoms pointing to MS but a completely normal MRI of my brain. he questioned weather he should do a spinal tap but said it was too early. He prescribed me with amitriptyline and basically just said wait and see.
The Amitriptyline is a antidepressant and it sort of reduces the nerve pain but all of the symptoms are still there.
Another 4 months went past without any symptoms (am noticing a pattern here) and then my symptoms are back, not really anything new this time but slightly more intense - especially with my numb throat (swallowing and breathing ok, but very noticeably numb).
I saw a private neurologist to speed things up and my brain MRI was booked quite quickly - again it was normal.
I am booked in for my spinal tap on the 17th of July and i am quite nervous about it.
I have a very supportive partner and my friends and family are amazing.
It is really ruling my life at the moment, the symptoms are unbearable during my 3-4 weeks of symptoms, i cant help with think that i do have ms.
I am so tired of talking about it and explaining my symptoms to my family and friends as it is draining as there is nothing anyone can do about it.
This message board has really helped me as you look around at other people in your life and you feel very lonely, very isolated but it is nice to know people out there really are experiencing the same hardship and its nice that we can be here for each other and share our experiences.
trisha58505 Johanna91
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My family Dr put me on minocyclene early on as I started to break out due to side effects and they now believe it has slowed symptoms. There are studies about its use early on. I recommend asking your neurologist. Good luck
lindaw210 Hayhue
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Best wishes.
haslie1939 Hayhue
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I had first symptoms of MS in early 1980. Was in a powerchair 5 years before getting diagnoses with SPMS by spinal tap and I have on lesions in the brain or spinal cord. I have occasional flareups and get three days of IV steroids and those are coming less frequent and less severe. My doctor say I do have MS and the older I get the less active my immune system is and not attacking my CNS. Last time I had a flare up a year ago the hospital doctors would not administer steroids because MRI did not show any active lesions. Then told me I did not have MS but all else has been ruled out. I just take care of my self physically and mentally and don't even let it bother me anymore. I am 80 and still independent. Why worry about something I have no control over???
bernadette32684 Hayhue
Posted
iv been in hosptial admitted a week ago due to callapsing with extreme muscle contractions and tingling in my head follwed by severe headache. this hasnt stopped now im on a constant morphine and muscle relactant for ppl with MS tho im not diagnosed. i have had all the syptoms of MS for a very long time the tinglys , speach , vision, muscle cramps and contractions , confusions ,loss of balance tbe internal vibrations and many others but my neurologist diagnosed me with migraine seizures . iv been medicated for migraines and seizures for over a year but stil suffering these symptoms and all my neurologist says is migraine migraine migraine . and here i am admitted in hospital i cnt even walk to the toilet as iv loss strenth in my legs and my useless neurolisgt os saying migraine tho tbe doctor wants me tested for MS . unreal
iv had Spinal tap CT scan head and neck this week but im having a MRI Today for spine .
my MRI last year was fine except i am borderline chiari 1 which again my neurologist isnt bothered about lolsorry for bad spelling struggling with typing
debbie84914 Hayhue
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I was undiagnosed for six years with a multitude of symptoms, very like yourself. I too had all the symptoms you mention, plus many more, and no lesions. I saw 20 doctors, GPs and specialists, and all were stumped. Finally a GP diagnosed it.... Parkinson's. Get a referral to a neurologist who specialises in Parkinson's or movement disorders at least. I saw two neurologists who also missed it as one specialised in MS, the other dealt with eye issues, so it's important they really know about Parkinson's Disease . I've been on PD meds for4 1/2 years and the improvement in quality of life is unbelievable. As soon as I started, I went from basically bed ridden to almost something close to normal. I could brush my hair and stand in the shower, even stand long enough to cook an egg on toast. I got my life back! And of course, the improvement in pain was a Godsend. Anyhow, it's worth looking into and I truly hope you find answers.