Quix i sent neuro letter

[janbubears]

Hi Quix - and everyone hope your all as well as can be expected  lots love.

I recently posted that i had 2nd neuro visit and i was told i had prob ms and cis as a dx.. Quix very kindly recommended that i wrote to my neuro and even if i said she was a family friend i could refer to what she recommended in the letter.  Well i did write the letter.

Here is the outcome: ( reply from neuro)  

Dear Mrs Buxton
Many thanks for your letter dated 25th october and the information you have had from a family friend who is a Paediatrician who suffers from MS suggesting you should be on disease modifying agents.

I note that you have positive oligoconal bands in your spinal fluid, but when i received the MRI scans earlier this year i was not convinced that these changes on the scans were typical of MS and i thought clinically that your symptoms were more likely to be a left c6 radiculopathy. Therefore, my current review is that the diagnosis of ms is at the very least insecure.

I will arrange for you to see me again personally at my clinic, and hopefully we can discuss the matter further and i can see if there have been any further events which might clarify matters.  Certainly at the moment i think it would be premature to think about DMA ..

Hi guys hope u got all that taken me ages write that from his letter ( please note - i saw his registrar on last visit and not him personally )

Thank you so much quix for advice - i may now at least get to see my neuro personally

Jan xxxxxxx

[suzsibs]

Hi Jan
Just read your reply from neuro, do you think it is just neuros in UK that are pratts or is it all over the world???
Sorry you have to wait until January to granted an audience with BATMAN!!!
We should pool our resources and black list the neuros who are pompous gits and get them named and shamed ;o)
Hope your arm is giving you less grief today.
Hugs
Suz

[janbubears]

bump

[janbubears]

hi nick will e mail u today babe after been drs get my script xx

what a friggin nightmare givin u run around like this

jan xx

[niki3350]

Hi honey hope you are going to go for 2nd opinion I do believe there are good neuro,s at walton neurology centre for ms sufferers.

Saying that my sis-in-law finds the ms nurses at staffs amazing and very helpfull.

I would be seeking a 2nd opinion Hun.

Well me being given the right roayal Chiari run around again, went for mri with contrast to staffs on 10th had iv line inserted went into mri, came out of mri thinking ok now they will insert dye. NO phsiologist guy that needed to administer sent home ill!!!!!!!!  so they have used bp monitor and plotted graph and hope they get results they wanted if not........ got to go back to have contrast......   why the hell did they fit iv line if they were not going to administor dye..... DUHH thick or what, praying now that they dont cancel my clinic apt on 22nd due to lack of results again, already had one cancelled due to the incompetence in getting mri done!!!!!!!!

Honey its never ending for us, e-mail when you get chance hun.

Hugs
Niki x x x

[janbubears]

Hi Michelle

thank you - now started my new meds nortripyline  see what happens xxx

jan xxx

[michelleislay]

jan, i am sorry to read of your troubles with the neurologist.  i truly hope when you finally meet batman himself, you get some more concrete information about where to go next.  if not, i'm with everyone else on time for a second opinion.
all the best!!!
xo michelle

[janbubears]

Hi Guys

Thank you for your support and kind words, i will push this further red i promise.. Im going to wait until january now, see what the neuro ( batman ) says  as opposed to ( robin ) the side kick.. ha ha

I also like many others would like a dx because my life insurance is on hold until i get one, also my disability and health benefits need a dx.  Also i would like to be assigned an MS nurse which here at the north staffordshire hospital are fantastic i believe.. But with no sure dx im not sure whre i am.. If he says probable ms which he has - should i still not be assigned to a ms nurse  ??? my niece is a nurse practioner at the hospital and she seems to think i should ..

hope dr quix gets better soon - well feels a little bit better anyway

love to u all

jan   xxxxxx your a great bunch of folk on here xxxx

[Sumanadevii]

Sorry but it would take a hell of a lot more than one doctor's word for me to go with the diagnosis of PPMS.  And even with two or more agreeing, I would fight tooth and nail for a DMD to prove it to myself.  Lucky for me, my neuro heard me loud and clear.  If Rebif isn't strong enough, there are others to try.  Damn if I would settle for nothing...a 33% chance of preventing more damage to my body is better than nothing.

[RedFlame]

Jan,

Your suspicion could be right on, I believe in trusting our own intuition.  

This man has no business being a doctor.  I really believe that he should be reported to whatever medical society he is under,  You don't treat patients like that, he's horrible.  He is being abusive to you, neglectful----please report him.

And DONT believe the c--- he is saying!!!

Red

[fortywhat2]

Hi Jan,
I have PPMS... I am not on any medication for it.  I have done a lot of reading on studies that conclude that injectable meds do not slow progression.  I chose with the advise of my neurologist to not use these medications.  I am however on meds for arthritis and fibromyalgia that also help with MS symptoms.  I currently take Lyrica, Celebrex and Paxil.  Not sure if this helps you at all.  I love my neurologist and feel she is working toward my best interest.  She told me if I insisted on injectable medication she would give it to me  but she didn't recommend it for PPMS.  In my opnion your neurologist doesn't sound like someone I would continue seeing.  Good Luck!
Debbie

[janbubears]

I have had my suspicions for a while that i may have PPMS

My reasons are .. i have few lesions, i am over 40, the IV 3 x day steroids didnt work.. so i am now wondering if this is the neuros suspicion too. Does he think putting me on MS drug will not work..

Jan x

[drsdonthelp]

Wow,, If I were you I would run fast, thats just my opinion.. I would hate for someone to tell me they couldn't treat me until I went blind or had a seizure.. I have to deal with this everyday of my life and thank God, I have a couple of descent drs. that would put me first and make sure I didn't go blind.. Good luck to you. Pamela

[supermum_ms]

Oh golly, is he saying its not definite MS unless you have a seizure or go blind? If thats the case you may never get a dx with this neuro, not every MSers or even a high proportion 'definitely' have seizures. The blind part of his comment is a myth, though he might be refering to having evidence of ON, and even thats a stretch!

I'd be finding a new neuro, or at least send him a ton of current medical research that disputes both those old and disproved theories and see what happens, though i'd be inclind to find another neuro because its very very hard to argue with their 'expertise' !!

Cheers.........JJ

[janbubears]

Hi Red hope u well

The thing is - there was white spots on mri brain scan, lesions on all 3 x mri,s taken, multi O Bands on lumber puncture.. Also my blurred vision got progressively worse now and i showed the neurologist the opticians report re; my left eye rapid deterioration - he put me on noritrypaline ( spelling ???)  because i have constant buzzing vibration in left leg from toe to hip new symptom.. told him i now keep falling sideways .. He says theres no new symptoms there - its all coming from original place lesions on c6 .. crap !!!!  he says until i have a seizure or go blind ( i swear thats exactly what he said)he will not diagnose def ms or give me ms drugs

jan xxxx

[RedFlame]

Oh Brother!!!!

First of all, the only person or thing that is 'insecure' is her and her inability to diagnose you.   If she really thinks you have radiculopathy, then she should refer you to physical therapy at the very least, seriously---and sending you to a rehab specialist too.  

And mentioning that you 'get to' see her again is ridiculous.  She really thinks she is special.   You deserve better than that.  

She is too afraid to diagnose you clinically.  

This is an outrage.

I don't know how things work there in the U.K., can you request a referral.

I could say alot about this but am keeping a lid on it.

lots of hugs,
Red