Had second MRI, 8/8; DR tells me yes you have spots on your brain, but I can't say it is or I can't say it isn't MS. Now what?
Having Intermittent hot flashes that make me feel all prickly. Is this normal, or my body twitch es all night . Dr says I don't know why you are experiencing this.
??????? W TF. HELP
Twitches but not all night long numbness yes hot flashes I get them some times and yes already went through the change.
You should get a spinal tap and if you do not drive your self and when they say do not do anything DON'T especially bending over and lie down a lot do it. I am saying this because I didn't and I ended up with a head ache the size of my house and I don't have a big house.
The spinal tap was the one test besides the MRI that confirmed I had MS.
Good luck
I agree with ssdw1958 , a lumbar puncture could help confirm if it's MS that you're experiencing. Good luck to you!
Yes, get a spinal tap. It will confirm if your bodies blood/brain barrier was compromised and you have your own antibodies in your spinal fluid, which destroy the myelin sheeth around your nerves. This is what causes the scars (sclerosis) in your brain. My neurologists' whose at the Cleveland clinic's Mellen Center specializes in MS. In addition to an MRI, including contrast MRI, and EEG to examine brain function, he also did a number of tests of my mental functions, including dexterity, and did physical tests of my coordination and balance, among others. When finished examining all the tests results he said his best guess is I have MS, and said there were some rare diseases that can exhibit some similar behaviors, but were very unkikely. Of course this is my understanding of the tests and diagnosis. The spinal tap as well as the mental and physical tests were what I understood helped confirm I had MS. A spinal tap is a key part for MS diagnosis. Again, since I'm not a medical Dr I probably have some of this incorrect.
kvw_zkw , I was originally DX in 1989. I then saw the esteemed Dr. Timothy Vollmer at the MS Clinic in St Josephs Hospital in 2004, who told me that I had no lesions at all, and my MS was very mild. He said he had never suggested this to a patient, but that I had now moved into SPM and that my DMT would not be doing me any good and that I could consider stopping DM, which I did. I have seen two other neurologists since then, and they both said they would not have diagnosed me with MS. Go figure! I wonder if neurologists are more reluctant to DX MS today than they were in 1989? .
I hate to say how do you have my mild MS I think you need to find another doctor and redo your test.
That's like telling someone you mildly have breast cancer.
I mean if you do that's great, but let's get real for a moment, because if it's not you might not even have it. Which would be a great thing, but if not and you haven't been doing anything to help you ________????
That's a big pause in your treatment.
That's just me just giving my thoughts to you.
kvw_zkw
I have horrible hot flashes and a lot of twitching at night in my shoulders. My doctor thinks the twitching is a form of MS spasms. I had contrast MRI on brain, spine and lumbar. I have lesions on the lumbar that correlate to the shoulders. I am taking Baclofen to help relax the muscles. Be persistent with your doc in getting additional MRI's /spinal tap. If you are able, go for a second opionon at Mayo Clinic or a teaching hospital. Good luck to you.
I would for sure see an MS specialist if you're not already and have a lumbar puncture done.
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Ditto all of the above comments. The spinal tap was the conformation my ms neurologist needed for diagnosis. It sounds scary, but it really wasn't bad. I highly recommend you see a neurologist who's specialty is ms. Even if it means some travel for you, it is important. Good luck to you!
ssdw1958 Yes, by all means have the spinal tap for confirmation. I am surprised that your Dr. did not suggest that. He must not be a neurologist? You need to see one, and preferably MS specialist. Mine did the spinal tap in his office, and it was painless, as I did not know exactly when he inserted the needle! I agree with the one who said "do not drive yourself to the doctor that day, and move as little as possible afterwards". I tried not to move much, but still ended up fighting a headache for several days. The spinal tap was the confirming test after 2 MRI's, for my Neurologist. That was 3 years ago. I take Tecfidera, and am doing very well at this time. Very few MS symptoms. PTL!!!
As for the body twitches, my only comparable is restless legs which are treated by gabapentin and ropinerole. Hot flashes come with being over 40ish? The first month on Tecfidera I had "flushes," felt more on my skin, than all over body, with normal hot flashes. Now both have lessened considerably.
kvw_zkw A spinal tap is how they found out I had MS. I had night sweats more than hot flashes, especially when I needed to use the bathroom
@kvw_zkw When I had the lumbar puncture I did not know how important it was to lay flat all day and not get up except for the bathroom. I had to have a patch done, that hurt. Also until they did the MRI on my neck, they didn't really find the lesion causing the most of the problems. Read anything you can find on MS symptoms that can help you to decide what other problems you may be having that are related to MS.
kvw_zkw , you were recently diagnosed with MS, right? So is your diagnosis being questioned or your recent MRI spots? I hope you are seeing a neurologist who specializes in MS-like one at a MS Clinic. MS can affect your body's way of regulating your temperature, bit other things can too (hormones, thyroid, etc). When I was newly diagnosed, I assumed everything was MS-related. It isn't.
I hope you get answers...and soon. A new diagnosis and then this? So frustrating and confusing. 😐💕
My doctors reply was after the second MRI...yes you have spots, but I can't say it's MS or from your chronic headache. The only way I can say it's MS is with a lumbar puncture.
I have these crazy hot flashes that make me prickly, pins and needles in my arms, I get the hot heaviness in my chest.
Dr. Says "I don't know why.
Confused
Sorry for being confused (me--I'm confused!). I appreciate the clarification. Others here have mentioned their pro-LP leanings. I've had two-about 26yrs ago. I was first diagnosed with MS based on the LP. My MRI was still clear at the time.
I'd make sure your doc is a MS specialist. And I'm not a doc, but some of your symptoms sound similar to some of mine.
No one wants an MS diagnosis. But after 9yrs of symptoms and testing, I was relieved when I got mine. For me, a diagnosis was better than the unknown. I hope you get an answer (whatever it is) sooner rather than later. 💕
I have an appt Thursday with a MS neurologists. As much as I love my Neuro doc, he doesn't specialize. Wish me luck.
@kvw_zkw I'm so glad to hear you say that. 👍🏻 It sounds like your non-MS neurologist was unable to give you the answers you need. Please let us know the plan after your appointment with the MS specialist!
Thank you
Great news, kvw_zkw ! Best wishes and prayers for your appt on Thursday. Take all your previous test/MRI results with you (if your current neuro won't be forwarding them). And take a list of questions. We'll be looking for an update! 💕
Thank you
More motivation to lose weight..... that's surprised even me!
Very confused and very sick
More questions steroids done
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