Well went to ER yesterday thought I was having a heart attack but thanks be to God I wasn't talked to the doctor about what's going on and he did a new MRI Cervical Spine and even the thoracic one said everything came back negative and all looked good didn't see anything on myspin at all nothing wrong with my spine at all but still can't explain why I have all the symptoms but now I don't have MS even was having the MS hug right in front of him and that's when they did MRI but still nothing thinks I'm was having panic attacks gave me meds for it all blood work came back good also now I am so confused do I just thank God and say I'm a miracle and he healed me please understand I don't want MS but I do want to know why I have had it for 9yrs and it's get worse but yet I don't have it thanks for all the prayers and feed back it sure helps having y'all to talk to God bless you all
ER trip: Well went to ER yesterday thought... - My MSAA Community
ER trip
I would request a referral to an ms neuro and repeat original testing that was done to rule out other diseases, including a lumbar puncture if you didn't have one back then.
Maybe the diagnosis was wrong back then, but you still have many ms type symptoms that you say are worsening?
I have seen MS neuro specialist except for yesterday and they did lumbar in 2014 at time of 1st diagnosis and it was negative but they still said I had MS. I don't know what to do now but thank you for your advice 😊
At least the trip to the ER got you the mri's quickly and hopefully ruled out any heart issues. Always best to go in if anything with your heart doesn't feel right so good for you doing that, too many don't. Stress/anxiety can really play havoc on all of us🥴
Yes it can and my heart is fine I'm so glad of that but still not sure about MS
wow can't understand how come no one has an answer for it ,,,take care and be careful...
You probably have a functional neurological disorder (FND). You should google it. They can do a million tests and not find anything. At some point you have to stop searching.
I never heard of that but thank you I Google it 🙂
Google ‘PIRA in MS’. This is where I am with Secondary Progressives MS. Not saying you have this BUT explains you do not have to have activity show on MRI to still have worsening MS.
Was your brain scanned also? I would take my scans to a neurologist and ask about the worsening issues.
how long did you have to wait in thr ER?
Getting a diagnosis is difficult for chronic issues. Half of it is ruling out other things. Blessings for your journey & keep advocating
What great news! HUH??? What you were told was MS is now looking like a very questionable dx. If you stop and think about this.. its a wonderful message for you. You are in a similar situation as myself right now, some/many MS type symptoms but no lesions to support MS and lumbar puncture saying you dont have it. For nine years it would seem some lesions should have shown up. Anxiety is a catch all that doctors say when they have no explanation. In my case its NOT anxiety. Ask yourself honestly is your life highly stressed, always worrying about this and that and bemoaning situations that others may not find concern with. Are you a worry wart??? If so.. there might be something to anxiety claim. If honestly this is not the case, time to start down the road to finding competent doctors whom can find what is wrong. Its a rocky road and not pleasant. My own journey still continues this path. You may find comfort in knowing that your spine is in great shape, all your bloods came back normal. What good news.. Now breathe a huge sigh of relief... make some new doc appointments and get ready for the arduous journey ahead. My first call may be to the doc whom diagnosed you and discuss how you have no lesions, negative lumbar. Best of luck.
Bettysmom has meitnoned FND - here's three good sites for you to have a look at. One of them describes it very well as "A “software” issue of the brain, not the hardware (as in stroke or MS)".
rarediseases.org/rare-disea...
mayoclinic.org/diseases-con...
While FND is very rare, it seems to be coming up a bit more often as a possible diagnosis for some people who seem to have many symptoms of MS, but no clinical evidence on MRIs and other standard tests for MS e.g. lumbar puncture etc.
Thank you I will definitely look these up and talk to my neurologist about it I go back in October
Thanks for citing these articles. Actually, FNDs are not very rare. But they may not be diagnosed very often. Doctors have trouble making that diagnosis so they continue to test and test and test, just as in this case. FNDs happen with other neurological symptoms in addition to those of MS, for instance, seizure disorders. Some people develop seizures when told that they have an abnormality in the brain, for instance, an aneurysm. However, their EEGs are entirely normal. Interestingly, if the aneurysm is treated the seizures may "magically" stop. FMDs are likely much more common nowadays because everyone has easy access to details of diseases on the internet. Functional disorders also occur in other medical specialties including dermatology and ophthalmology.
See an MS neurologist for a second opinion
Hey Tazmanian I have seen one and waiting to get another MRI done late September and then go back to him in October bit thank you for the advice 😊
Good luck
How many MRIs with normal results have you already had? As I said before, at some point you have to stop testing and accept the good news that you do not have MS.
The 1st MRI shows white matter on my brain that's what the 1st doctor went by but this new doctor says there still they don't look like MS but I just had MRI of spine this week that showed nothing having another MRI on brain next month
FINALLY had my 1st Neurologist appointment today…..
11 Feb 2023 The search is on
Is it MS or not? No answer !
UCSF Dr, Report
