What do you if you get a vague diagnosis of MS?

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What do you if you get a vague diagnosis of MS?

Postby Daisy3 » Thu Feb 18, 2010 9:22 am

We have been told that based on the fact that certain tests have eliminated other conditions, it only leaves 'MS on the table'.

Not been told what type, the neuro is not keen on seeing us again and we kinda feel like we have been left in the lurch.
Any of you other guys been through this? What would you suggest we do?
We are going to get another opinion from another MS Neuro, but I am dubious of anything that is said by this group.
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Postby L » Thu Feb 18, 2010 10:39 am

Well, there's some small comfort in knowing that it's MS because some of those other illnesses are even worse!

You can take some comfort in the fact that the disease course can be fairly slow. It usually is.

You might want to look on the CCSVI sub forum.

Also Biogen, amongst others, are working on drugs to repair neurological damage.

Rituximab is a monoclonal anti body which gives you a very good chance of not progressing. It is used 'off label' at the moment.

All in all, although it's never a good time to get this horrible illness, treatment is better than it's ever been.

Very high doses of vitamin D (10,000 iU +) daily offer a good protection agaist the disease (and various other serious illnesses), it has been recently discovered.

I would look into modifying your diet. Cut out saturated fat for starters.

Um, what else? It's probably quite difficult but try not to dwell on it. It's really not as bad as it seems at first.

Good luck.

-edit-

OK, looking at your other posts (I was seeing if I answered a similar question a few days ago, but it was someone else) I see that you knew all about CCSVI. It seems to be most effective for the newly diagnosed, as I'm sure you know..

My old neurologist referered me to my current neurologist because I asked for High Dose Cyclophosphamide treatment, and my old neurologist said that he didn't like using such major drugs. My new neurologist gave me Rituxan (Rituximab). The spending did take the best part of a year to get approved by the local trust. Which is a shame because in that year I had a horrible relapse which left me quite a bit worse off.

I haven't done a very good job of answering your question, have I?
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Postby shye » Thu Feb 18, 2010 3:29 pm

Daisy3
did they really run enough tests to eliminate ALL else? find out what the new neros say, and work from there. You don't want such vagueness--if they think it is MS, but can't determine exactly, you want to know exactly why they think it is MS. With that info, then come back, and read extensively this whole site. There is much re: nutrition (my preference), meds, chiropractic and osteopathic manipulations (again, my preference), and of course CCSVI. If they do give definite reasons think it is MS, worth getting tested for CCSVI for sure.
Good luck !
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Postby tara97 » Thu Feb 18, 2010 11:49 pm

as far as being left by your neuro try another or better yet I had the best luck with a GI jsut because you have neuro symtpoms doesnt mean tht you belong with neurologist. try different angles, endochrinolgist. what are your symptoms? are they symetrical, asemetrical, ascending, decending, poroximal, distal, sensory, motor. I tell you I have had it all, including a central motor disturbance I think it was a seizure in the motor part of my brain.
symtetrical, ascending usually is peripheral nerves, sensory would be demylinating, motor would be axonal.
asymetrical, all over, anywhere is usually central nervous
poroximal motor disturbances could be neuromuscular junction like myasthenia gravis usually decending involving face or eyes shoulders first .
asemetrical motor disturbances in both central and peripheral that dont remit is ALS if they do remit then your a weirdo like me.
you can have central disurbances with out lesions
I have them all the time and I have only had acute transverse myelitis as far as lesions are concerned. I have also had guillian barre syndrome. I think that my most recent bout was dystonia or parkinsonism or somthing because my neck froze and my trapezius were like stone, yet my shoulder were not raised. them my whole body became ataxic and my face froze up and then just like that it stopped.
dont let them rail road you. My central disturbances are being controlled by gabapentin because they are seizures they just look different. gabapentin is relatively harmless. there are so many other diagnosis out there but it doesnt happen in a vacum neurology is not an island there is a whole body that goes with it and the underlying cause neednt be over looked. start with a nutrition panel.
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Postby sou » Fri Feb 19, 2010 1:03 am

Hi.

Why is the neurologist not keen in seeing you again? If there is something they can do, it is diagnosis. AFAIK, they can't cure anything and, now, the refuse to diagnose, too?

sou(r)
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Daisy3 » Fri Feb 19, 2010 3:19 pm

shye wrote:Daisy3
did they really run enough tests to eliminate ALL else? find out what the new neros say, and work from there. You don't want such vagueness--if they think it is MS, but can't determine exactly, you want to know exactly why they think it is MS. With that info, then come back, and read extensively this whole site. There is much re: nutrition (my preference), meds, chiropractic and osteopathic manipulations (again, my preference), and of course CCSVI. If they do give definite reasons think it is MS, worth getting tested for CCSVI for sure.
Good luck !


Neuro had some concerns about it being something rare, but that was all fine, so by default it left MS. I wonder if that is because its all he sees.
He has not said what type it is and that concerns me a bit.
Just not helpful at all. And he cost a lot of money as he was private.
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Postby Daisy3 » Fri Feb 19, 2010 3:21 pm

Were slightly unsure about what steps to take next.
Getting another specialist to give us his opinion first though.

L wrote:Well, there's some small comfort in knowing that it's MS because some of those other illnesses are even worse!

You can take some comfort in the fact that the disease course can be fairly slow. It usually is.

You might want to look on the CCSVI sub forum.

Also Biogen, amongst others, are working on drugs to repair neurological damage.

Rituximab is a monoclonal anti body which gives you a very good chance of not progressing. It is used 'off label' at the moment.

All in all, although it's never a good time to get this horrible illness, treatment is better than it's ever been.

Very high doses of vitamin D (10,000 iU +) daily offer a good protection agaist the disease (and various other serious illnesses), it has been recently discovered.

I would look into modifying your diet. Cut out saturated fat for starters.

Um, what else? It's probably quite difficult but try not to dwell on it. It's really not as bad as it seems at first.

Good luck.

-edit-

OK, looking at your other posts (I was seeing if I answered a similar question a few days ago, but it was someone else) I see that you knew all about CCSVI. It seems to be most effective for the newly diagnosed, as I'm sure you know..

My old neurologist referered me to my current neurologist because I asked for High Dose Cyclophosphamide treatment, and my old neurologist said that he didn't like using such major drugs. My new neurologist gave me Rituxan (Rituximab). The spending did take the best part of a year to get approved by the local trust. Which is a shame because in that year I had a horrible relapse which left me quite a bit worse off.

I haven't done a very good job of answering your question, have I?
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Postby shye » Fri Feb 19, 2010 4:23 pm

Hi Tara
Please read your last 5 mails!
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Postby euphoniaa » Sat Feb 20, 2010 6:38 am

Daisy3 wrote:Neuro had some concerns about it being something rare, but that was all fine, so by default it left MS. I wonder if that is because its all he sees.
He has not said what type it is and that concerns me a bit.
Just not helpful at all. And he cost a lot of money as he was private.


Hi Daisy,

I'm sorry you're going through this and I don't have much advice besides what's been given - I'm glad you've already been reviewing the whole site. There is TONS of info here. I think the most important statement you made is that they've eliminated some even more serious issues.

As for the "type" of MS, that's only an educated guess, and should require years of observation before they can say something like, "Yep, that's a Progressive case because, sure enough, she kept Progressing & Progressing all these years, and it must be PPMS instead of SPMS because she didn't have any RRs during that time period at all..."

My neuro actually calls me "RRMS with no Relapsing & Remitting" in her reports even after 30 years of MS symptoms because she says I meet all the SPMS criteria except I'm "not sick enough." :) It doesn't matter to me.

My own opinion - and, as usual, I believe I'm in a minority of one :) - is that I'll be eternally grateful that over my 30+ years of MS no one ever dx'd me with anything or tried to treat me for it. That's what forced me to confront my wayward body, adjust, accept, and learn to live with its issues, discovering dozens of non-med ways to help relieve them in the meantime.

I swear by a healthy diet, strenuous exercise, plenty of sleep - and a major dose of humor. :) I am excited about the idea of CCSVI and its treatment, although I believe it's way more complicated to treat than it would appear. I'm looking forward to the new discoveries. But...I have so many other medical problems I doubt I'd even notice if MS disappeared from my list.

Good luck!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby notasperfectasyou » Sat Feb 20, 2010 8:00 am

do a search on this site for the words:

Differential Diagnosis
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