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cochrane report

hi,only posted a couple of times so bear with me,though find the information on the forum so helpful. ive just seen my neuro for 1st time after dx.when i left him last time he asked me to look into dmd’s. after some consideration i was thinking ‘not for me at this moment’ as i have had very mild sensory symptons and none since beginning of this year. dx was benign ms. my neuro is now saying no meds and seemed very full of 1 or 2 conferences he had been on,was quoting the cochrane report!!? luckily we did have a similar mind on many aspects,so i came away fairly happy.he did mention that as my serum ace levels were slightly elevated maybe i should have a lp to 100% confirm ms dx.but he then decided that was not neccesary as the symptons for diseases relating to that eg sarcoidosis and another spine infection word that i cant remember show much more aggressively,like epileptic fits and hallucinations. joy… anyway he is making app for me with ms nurse which is what i was after and my next app with him is for 12 months time-seemed excessively long time away? is it? but to contact ms nurse with any worrying symptons and the nurse can bring that app forward. feel like i went in with one lot of issues-some sorted but came away with some new ones. reading forums this seems to be par for the course.

Hi Hopeful

I’m sorry for your MS diagnosis (though benign MS isn’t really a diagnosis he can give yet as it can only be benign if you’re relapse free for 10 years). An LP isn’t necessarily needed if neuro exam and MRI show enough to confirm a diagnosis. Many people on here have been diagnosed without.

In my case

  • I have had ‘offical symptoms’ since oct 2011
  • my two MRI’s showed non-specific brain lesions.
  • Symptoms:
  1. Oct 2011: parasthesia L leg / hand / L lower half of face / bladder issues / bowel issues briefly
  2. April 2012: Spasm (hug)
  3. May 2012: Facial pain ? trigeminal neurlagia
  4. June/ July 2012: Spasm (hug) / neuropathic pain
  5. Jan 2013: lassitude / fatigue
  6. July 2013: parasthesia L leg / hand / bowel issues / spasm / neuropathic pain / reduced sensation in my privates

I have rercovered from most my issues thankfully and only have occasional facial pain / bowel issues and stiffness (residual from the spasm).

I’ve had issues seeing a neuro as my neuro went on sabbatical but at my last consultation a year ago I was ? possible MS but no DMD’s offered in spite of at least 2 episodes as I had recovered and most my issues were sensory (I’d argue that hug and bladder issues are hardly sensory but I was better).

It was suggested I could go for an LP and if this was positive I would have diagnosis of probable MS but still not conclusive as MRi not showing conclusive MS lesions. I would also not get DMD’s. So, I therefore opted not for LP as I would not be given treatment if it was positive and I would have a diagnosis of probable MS which I would then need to declare (at the moment I’m not official MS). Also there is a small chance that what I have isn’t MS and I could get pigeon-holed with a wrong diagnosis ( though neuro has investigated everything else viable).

The guiedlines for DMD’s though state 2 relapses, are very subjective to the neuro - I’m sure if I’d seen another MS specialist they may have offered me DMD’s easily. I was happy to go with it though at the time as I was fine. Now I finally have a review with another MS specialist next week and I’ll be interested to see what they say in light of the new symptoms this year. For me I’d like to have another MRI brain and spine because if I do have any more lesions particularly ones that look like MS then I would push more to be officially diagnosed and get on to DMD’s. How many epsiodes of symptoms have you had and did your MRI show any lesions?

Neurology has many inconcsistancies in it. In terms of seeing an MS nurse it may be a year review as you’re not being put on any treatment (though I’d agree a year seems quite extreme). But it’s good that you have a poitn of contact if you run into trouble - I struggled so much with my spasm and neuropathic pain this july/aug and GP won’t give meds to help and I had no neuro appointment. I’ve had to really fight to get some help. This is the negative aspect of not having a clear diagnosis though.

I’d agree that the last conference / or journal article read can sometimes influence these doctors. Hoepfully they are questioning the applicability and reliability of these findings without just taking them verbatim.

Good luck in your journey and sorry for the rant. It’s just interesting how each neuro deals with things differently. look forward to your response.

Reemz

X

The guidelines say “You must have experienced at least two clinically significant relapses in the last 2 years”. If you have recovered from your relapses they cannot be classified as being clinically significant.

Also the number of lesions is not relevant. One person could have many lesions but few symptoms, whereas another person may have one or two lesions and be seriously affected by MS. The issue with lesions is what part/s of the brain, therefore body, they are affecting.

Liz

Hi Liz

that’s interesting - thank you for that info. I didn’t know that if you recovered then you weren’t eligible for DMD’s as it’s considered not clinically significant.

I said the above as my own neuro admitted to me that if I saw somebody else I would probably get DMD’s as what one neuro considers clinically significant is different from what another neuro might consider clinically significant (though it wasn’t something I was keen on myself as the diagnosis isn’t definitive hence I never pushed) .

Thank you for the info above. It’s certainly interesting but I’m no rush to go on any treatment unless of course I am confirmed to have MS.

Reemz

X

thanks for reply reemz. my history is 2008-numb whole right leg which was dx as b12 deficiency which was treated and that seemed to sort it out and i was kept on the b12 till this year as tests showed it was sky high. mid 2012- numbness in hand that was dx as carpal tunnel that sorted itself out in a few weeks without treatment. sept 2012-tiny numb patch by my nose which doctor pescribed amitryptyline and that went in a week. march 2013-left side of body numb and burning which could be a hug? doctor then got me the nuero app as he wasnt happy with random symptoms. i went in april to neuro where we chatted and he did some tests,and then had head,spine and lumbar mri in may. had loads of blood tests in between. got results and dx on june 10th.mri 1 week before my 50th b/day! mri showed 2 lesionson brain and 1 on spine. ive seen my gp since and chatted with him as we get on well.ive come off b12 injections as my levels were sky high 1260 which neuro thought excessive.ive just had blood test and thats dropped to 612. my doctor is prepared to still give me the b12 if i want it-no problem.im thinking on that and may have another blood test end of year.i have wondered about this benign tag which neuro also used the word mild ms term this last app.as i also have mild asthma and mild hayfever and mild urticaria. and ms always travels with other auto immune problems. think you are right that a doctor/neuro is influenced by the latest article and medical paper.i suppose its pot luck where you enter into that way of thinking. hope i too havent gone on a bit.good to chat sometimes.feel free to pm me,kim