I have had years (10+) of trying to figure out what is going on with my body and each time I got to a specialist I get treated like it is all in my head and feel dismissed so I have just dealt with the symptoms. After multiple lab work and testing I had recently been diagnosed with chronic fatigue and fibromyalgia. My most bothersome symptoms have been unrelenting fatigue and pain in my upper back (as well as other places) with no cause found.
I also have had weird random tingly, vibrating or numbness feelings in different locations but twice now has been distinct times.
About 10 years ago had a sudden onset of tingly, numbness, vibrating type feeling in both my legs from waist down. Was referred to neurologist at that time, neuro exam was normal, so she treated me like it was in my head and talked me out of an MRI. That sensation lasted for several months, eventually subsided but continued to have the random feelings.
Now a couple weeks ago I started having and numbness tingling sensation chest down on the left side of my body (you could draw a line down the center of my body, it stopped midline) with pretty sudden onset.
I was waiting for a neurology referral but they didn’t have anything til March and it was continuing to get worse were I was starting to loose fine motor skills with my left hand and it was starting to cross to my right side (crossing midline of trunk and bottom of right foot). So I went to the ED. Had MRI which showed one active lesion in my cervical spine.
Was admitted for IV steroids and lumbar puncture. The steroids have helped and the symptoms are 80-90% resolved, just continued numbness in hand but able to use it normally
The doctors at discharge were really thinking MS due to my history but did not meet criteria so we’re waiting for the LP results.
Well the lumbar came back normal. Normal oligoclonol bands. I’ve been doing a lot of googling and based on the calculations my IGG index was 0.83 which is abnormal, but the lab results show 0.6. I’m not sure where that difference came from or if it is even significant if the bands are negative.
But they are now saying idiopathic transverse mylenitis is my diagnosis.
I just don’t believe that I have an idiopathic spinal lesion , chronic fatigue and fibromyalgia, all diagnosises of uncertainty.
I really feel like all of my symptoms are related and have been going on for years. My GP and I both thought I could have MS with the first episode 10 years ago.
But I am feeling so lost. I need to figure out what is going on. Any suggestions on what else to do, where to turn to get a proper diagnosis (even if not MS just something more concrete)?
Is MS completely ruled out of the bands were normal or is there some other testing to be done?
Hello just to say I’m one of the 5/10% of people with MS who had a normal LP.
So the answer is yes it’s possible to have a normal LP and have MS.
My journey took 3 years to reach a formal diagnosis.
My first MRI found many brain lesions and a couple of c spine lesions with demylination indicative of MS.
My neurologist diagnosed me with probable MS.
I was put in touch with my MS nurse straight away.
My neurologist was convinced I had MS for many years as my lesions were old.
It wasn’t until a new lesion was found 3 years later that I was formally diagnosed and prescribed Copaxone.
Did you have a MRI of your brain as well as your spine, if not , ask for one ?
If you did have one , I take it nothing was found ?
As you know you need to meet the Mcdonald criteria to get a formal diagnosis.
If you’re not satisfied with the diagnosis challenge them.
Your symptoms could be MS or something else and certainly I would be asking for follow-up MRIs.
I had them 6 monthly at first and then annually.
I do hope you get the help you need.
Take care and let us know how you get on.
Thank you so much for the response. I did have a brain and full spine MRI and it only showed one lesion.
I know it doesn’t meet the criteria for MS and I know may very well not be especially since I only had one lesion and no bands, but I know that it is not just a random idiopathic lesion. I definitely feel like there has been a long standing something going on with my body.
They are planning on doing another MRI in a year. I’m just scared to wait forever for something to just happen again, I thought I was going to lose the use of my hand with this episode and even though it my nondominate hand I would not be able to do my job anymore without it, so it definitely made me a little more scared then my previous symptoms have. I’m so glad the steroids helped, but I don’t want to just sit around and wait for it to happen again or to not be able to walk or something.
Also I have just been emotionally struggling with all of this, because as much as I know MS is not a good this, I was really hopeful for an actual diagnosis, and now even with a lesion in my spine, I still feel like I’m being treated like it is all in my head like I have been treated for the past 10years.
I just feel like it doesn’t make sense for me to have 3 diagnosises that are all basically "we don’t know what’s wrong with you " type of diagnosises.
I just want answers.
If I were in your shoes I would do some research into taking a strong dose of Omega 3. Hope you finally get it resolved though whatever it is.
Cani ask, are you getting treatment/ help for fibromyalgia? Also has any one talked to you about treatments for transverse myelitis symptoms?
I am taking a couple meds to help with the chronic fatigue and fibromyalgia, but still deal with a good bit of fatigue and pain each day.
The only treatment they did for the transverse mylenitis was 3 days of IV steroids in the hospital