brain scan, results show Demyelination does this mean he has MS

[GillyGangGong]

Hello all. I’m looking for advice? Hubby been having trouble walking ect numbness electric shocks ect ect he just had a mri which showed Cervical Myelopathy he was given a brain scan, results show Demyelination does this mean he has MS too? I’m so worried.Any advice would be very much appreciated.

[Royjr]

That could be a possibility but no one here can or should try to diagnose him, only a clinical person should give that diagnosis. I wish you and your husband the best. Good luck.

[GillyGangGong in reply to Royjr]

I understand, it’s just our doctor didn’t really explain things very good. Thanks for the reply and good wishes.!

[Peruzzot in reply to GillyGangGong]

I would recommend calling that doctor to get answers to your questions and if he/she is unwilling or unable to explain everything to you find another doctor who can.

[kdali]

There are a lot of demyelinating diseases! Sometimes if it’s MS, the radiologist will note in the conclusions portion of the report “consistent with MS” or something similar.

I would focus on what the next step is and if you don’t know what that is, then call the doctor’s office back and find out.

GL!

[GillyGangGong in reply to kdali]

Thanks for the reply . GP who has the brain scan results did mention something along the lines of MS. ~ We can’t ask anyone what the next step is as it’s supposed to be decompression surgery now there are two neurologists involved apparently they don’t agree with each other, so all we can do is wait until someone gets in touch.

[kdali in reply to GillyGangGong]

Ok, it sounds like you are not in the states. I hope someone gets back to you and let’s you know what to do next.

[GillyGangGong in reply to kdali]

Thank you, me too a phone call a letter anything and no we are in Leeds 🇬🇧 UK

[pmbevac in reply to GillyGangGong]

Ah, Leeds - I used to love taking the train in from Harrogate to go shopping or dinner or a pub crawl...

When I first had serious symptoms the neuro in Harrogate didn't seem too interested in diagnosing MS, but labeled it some "demylelination" disease. I only got that far because ,after the stroke possibility was eliminated, I went private. I am an American and was stationed at Menwith Hill at the time so had private insurance, and so had an MRI that same week. If I had waited on the NHS it would have taken many months to get that MRI. I only say that to say the wheels of the NHS turn slowly if the problem is not acute, but they turn. If you can go private it may speed them along. I did eventually get the MS diagnosis upon returning to the States a year later. But my neuo here did go through my medical history and tied a lot of seemingly unrelated symptoms together to make that diagnosis - I don't remember that sort of an interview happening in Harrogate.

Bets of luck, and if you get the chance have an Old Peculier for me...

[Timeflies5 in reply to GillyGangGong]

Sounds like it may be a dual diagnosis? It’s always possible to have more than one thing going on at the same time, such as Degenerative Disk Disease (DDD) and Multiple Sclerosis. I had a total of two neurosurgeon’s opinions and two MS neurologist’s evaluation too. I was told to keep in mind their specialities may likely influence their recommendations for treatment.

I did a lot of research and concluded that back surgery was always last resort, when attempting to treat spinal problems... and learned that deciding on a DMT for treating MS was ultimately my call, once I felt I had sufficient information.

Tough choices for any patient, but life is always about choices. Not saying this is your spouse’s situation, but I do encourage gathering as much information from the doctors involved in your husband’s plan of care...and also see what can be found online concerning the diagnoses on reputable medical websites...this will all enable you to make more well-informed decisions. Hope this helps...God bless🕊

National Institute of Neurological Disorders may be a good start. There are many others too. Just tossing one.

ninds.nih.gov/Disorders/All...

[GillyGangGong in reply to Timeflies5]

Thanks for the reply, your so kind. from what I’ve read it does sound like a duel diagnosis. it’s very frustrating as nobody has been back in touch. I do understand that it might not e possible at this very hard time. However it doesn’t stop be worrying. I will check the link.

[rjoneslaw]

U should talk to the dr

[GillyGangGong in reply to rjoneslaw]

Tried today via telephone convo but couldn’t understand him. Just spoke to spine fit and he says that husbands decompression surgery is a separate thing to the brain stuff. So he will see a neurosurgeon and a neurologist. Thanks for the replies

[rjoneslaw in reply to GillyGangGong]

When they talk to u like that u should stop them and tell them to speak to u in a way that u can understand

[GillyGangGong in reply to rjoneslaw]

Agreed.~he’s Indian and talks behind he’s teeth. If you know what I mean. Every time he tried to ask a question like who is the neurologist or who is the neurosurgeon he interrupted him. Started repeating himself with words on screen He started the phone call with Good news it’s not cancer. The jerk.

[Jesmcd2 CommunityAmbassador in reply to GillyGangGong]

Call the receptionist for the names GillyGangGong you might have better luck. I just had the cervical surgery. My neuro and neurosurgeon argued about a lesion also.🙃 So hang in there!!!

🤗💕🌠

[GillyGangGong in reply to Jesmcd2]

Awe thanks for the reply I will get him to call receptionist I suppose it’s the not knowing, having the surgery is bad enough with this hanging over our heads. Are you ok now? Xx

[Jesmcd2 CommunityAmbassador in reply to GillyGangGong]

I haven't had a follow-up MRI yet to see if there was a lesion, or if it was my neck. My neck surgery went great though! Just follow the Drs orders!! 🤗💕🌠

[GillyGangGong in reply to Jesmcd2]

That’s good to know that your op was a success! doctors orders are to wait 3 weeks if not heard anything he will write to the neurosurgeon. Hope you receive good news soon. + I hope you make a swift recovery! Xx

[Hidden]

I dont know but I dont think so if iam right its immflamation somewhere has he had spinal tap instead of looking for what is wrong sometimes it's more of process of elimination and dont forget the less meds the better sometimes alot of pain can be from alot of medicine cause you have normal stuff too

[GillyGangGong in reply to Hidden]

No he’s not had anything just two MRI’s I thought try might do a lumber puncture. He’s not on a lot of meds just codeine and paracetamol with amatripaline at night. It’s more the sensations and electric shocks + his walking has gone downhill even in the past week. thanks for the reply

[Hidden in reply to GillyGangGong]

I have the same issues more than one dx I take gabapentin for neuropathy

[GillyGangGong in reply to Hidden]

Awe it’s hard being in pain, getting all the funny sensations and numbness, is that all they can do for you medicine? Does it help. I take preagablin. It’s for my pain and helps me sleep deeper R.E.M. xx

[Hidden in reply to GillyGangGong]

I have been on some sleeping pills cause I have a problem falling asleep and staying asleep

[Hidden in reply to Hidden]

Iam not now

[Hidden in reply to GillyGangGong]

I'm no doc demylation is the coating on your nerves

[GillyGangGong in reply to Hidden]

Ah so it’s a loss of coating on the nerves?

[IFwczs]

When this pandemic ends, try to get a second opinion. Sounds like this doctor is afraid to commit to a diagnosis.

[GillyGangGong in reply to IFwczs]

I know we would like an opinion. Even if they aren’t going to do anything for the time being a phone call would be nice. It’s the waiting that’s hard. 🤷‍♀️ Many Thanks for the reply.

[Hidden]

Yes

[CrazyCatWom]

That is the "scerosis" part of Multiple Sclerosis. When the body starts attacking itself, and it goes after the mylin over the nerves. That's the only reason why I finally got my neurologist. I'd been trying to get in to see a neurologist for over 5 years. But in 2018 I was rushed to the hospital. They did an MRI, where they found 3 brain anurysms . . . . however, they also saw the entire left side of my brain was white with leisions. The note made by the radiologist included, "the demylinization, however, is more indicative of multiple sclerosis . . . " I was so whacked out, though, I couldn't sit up and say "BINGO!" So, they asigned a neurologist to my case, and I was so fortunate to get the best one.