Variants of MS

[mjan]

Ever heard of anyone saying there are VARIENTS of MS?

My present neuro said that to me this year after learning that I was monitored by an MS neuro for years then told I do not have MS

So.. he's sending me to MS neurologist to confirm that I have a varient of MS..he believes I do have MS. AND wants this MS doc to help with meds as I do not tolerate many meds due to my kidney/autonomic disoders.

Have you ever heard of varients?

Jan

[Redwings]

Hi Jan:
There are variants of MS, but which conditions are included on the list depends on whose definition of "variant" is being used. One definition might include only subtypes of MS (RR, SP, PP, RP), another might include conditions that follow the same pathophysiology as MS, and another might include any demyelinating disease, whether or not it shares any other characteristic with MS. For example, some might call Sarcoid or Sjogren's neuropathies variants of MS, while others will argue that they can't be called that because they're caused by completely separate diseases.

Probably the easiest to identify is the Marburg variant, because it has "variant" right in its name. Another is Balo's disease, aka Balo's concentric sclerosis.

Before 2005, Neuromyelitis Optica (aka Devic's disease) was considered to be a variant of MS, and older literature refers to it as such. However, research by the Mayo Clinic has since determined that it is a completely separate disease. It is still called an MS variant by anyone who hasn't kept up with the findings or uses "MS variant" for any demyelinating disease.

Also included, depending on the definition, could be Acute Disseminated Encephalomyelitis (ADEM) and Schilder's disease. And there are others, depending on the definition of "variant." You can find out more by doing a Google search.

[mjan]

So thanks Redwings..for your very informative answer.

I did google variants and found a lot of info.

Jan

[Tawanda]

Wish I knew how to speak, "DOCTOR"!

Ever heard of anyone saying there are VARIENTS of MS?

My present neuro said that to me this year after learning that I was monitored by an MS neuro for years then told I do not have MS

So.. he's sending me to MS neurologist to confirm that I have a varient of MS..he believes I do have MS. AND wants this MS doc to help with meds as I do not tolerate many meds due to my kidney/autonomic disoders.

Have you ever heard of varients?

Jan

Dear Jan,

This is a very unusual post. I don't blame you for being confused. I've never heard of M.S. not being M.S.! Redwings certainly gave a thorough answer while I drew a complete blank here...

I also wanted to comment on doctors talking gibberish to us...what the heck is that about?! I am such a conflict-avoider, that I have to really, REALLY push myself to ask the necessary questions of my doctor. Of course, I know I'm not his only patient, and others are waiting, but I write everything down beforehand and go question to question, right down the list. I probably understand about 50% of what his answers are (as he probably doesn't really have answers - when it comes to M.S., no one really does). My list saves a lot of time and protects against my massive forgetfulness.

When it comes to my doctors and me, I really do think we are all just "Bozos on this (M.S.) Bus". Good luck getting answers, and let us know how things turn out. ((HUGS)))


I wish I was lucky enough to have a relative or friend who could go with me to my appointments and help me out when I get white-coat phobia. It would be even better if I knew someone in the medical profession (but sadly, I don't). What about you? Is there someone who could help you pinpoint the information you need from the doctors who are treating you?

[mjan]

Hello Tawanda and thanks for you honest felt response.

I dont always have my questions answered but have gotten gutsier with this doc. Besides I am getting to old to wonder.

But..He threw me for a loop in February, when he mentioned MS again after years of being monitored and being told NO, its not MS. But he was not the ONLY doc who questioned why I was not diagnsosed with MS.

AND he has a french accent so changes the accent on words I know. Gets confusing. He is so insistent in proving he's right and I have MS (along with seizures).

Trust me, I am scared of getting thrown yet another loop when I see the MS specialist..at least she is in the same clinic with the another specialist I see there.

Thanks again for responding..take care

Jan

[Tawanda]

AND he has a french accent so changes the accent on words I know. Gets confusing. He is so insistent in proving he's right and I have MS (along with seizures).

Jan

Sounds like arrogance translates across all language barriers when it comes to our doctors!

[mjan]

OH no, not arrogance..hmm..interesting Tawanda you took my comments about this neuro as "arrogance."

If it weren't for him..I don't know who would be helping me. He was just so determined to help diagnose me when I was not accepting of MS diagnosis due to my past experience.

BUT yes I would sometimes have to ask what he meant as he would change the syllable..but..its amazing that HE can speak more than one language MEDICALLY.

He didn't know what "goosebumps" were..so the resident has to tell him piloerection (correct name, not the slang one) and so we both had to work together to figure this ou. See??

Now I will have 2 women specialists: one for MS and the other for seizures...but I am still grateful for this neuro taking on my very very complicating case.

Jan

[dutchtreat]

there was a program offered by my cable company about MS. They did mention 4 different "varients", but none that redhawk mentioned. I would need to watch it again to be exact. One had to do with t-cells, then circulation of t-cells,
autoimmune and one thing I cant recall just now. This is a very informational thread. thanks for starting it.

[Tawanda]

OH no, not arrogance..hmm..interesting Tawanda you took my comments about this neuro as "arrogance."

If it weren't for him..I don't know who would be helping me. He was just so determined to help diagnose me when I was not accepting of MS diagnosis due to my past experience.

BUT yes I would sometimes have to ask what he meant as he would change the syllable..but..its amazing that HE can speak more than one language MEDICALLY.

He didn't know what "goosebumps" were..so the resident has to tell him piloerection (correct name, not the slang one) and so we both had to work together to figure this out. See??

Now I will have 2 women specialists: one for MS and the other for seizures...but I am still grateful for this neuro taking on my very very complicating case.

Jan

Sorry Jan,
Perhaps I was projecting my own experience with doctors on to you! It just seems that too many of us have too many questions when it comes to our health, and doctors have too few answers (not necessarily their fault). Perhaps I am guilty of "blaming the messenger"!

Good luck getting the answers and treatment you need. Have a good one!

[arjay]

There's something called Chronic inflammatory demyelinating polyneuropathy (CIDP). It's also a demyelinating disease but it tends to affect the peripheral nerves in the limbs rather than the central nervous system like MS. I can't help but think they are somewhat related, however.

Pretty good overview in Wikipedia:

http://en.wikipedia.org/wiki/Chronic...polyneuropathy

[onlyairfare]

A lot of people in Limboland would love to have a doctor who "insisted" on getting the diagnosis!

[Christian_88]

GOOD POST, JAN-!

Hi Jan,

Robert here ("Wotan" on HW)-! Good post on MS 'variants"-! I've been thinking about that...for awhile now! Get back--Christian

[Christian_88]

Hi Jan

Christian ('Wotan') here--

Good point you made re: "Variations of MS"-!

I've often thought about this--Christian

[mjan]

Hey Christian.. WELCOME and thanks for responding.

Trust me you will get a lot of support here on this forum.
Like me you can use other forums too.. I have many problems so I am on a lot of forums.

Don't forget to post on Limbo check in. The moderator Minivanmoma is on vacation but she started the post earlier today. Others will come on and SEE you..so tell them you are NEW and look and see how many will be there for you.

Read your other post as to how you fired your neuro and called the Chief to report him. Remember..docs only know..what they have been trained to know. If you did not show concrete signs and symptoms..they do as much as they can. Specialists also see things from their specialty and can lead you in good ways or misidagnose you too.
WE all know that.

Hope you and all of us get the answers and help we deserve.

Warmly, Jan