Last reply 2 years ago
Neuros' – hows yours

Hi All

Do we share info on Neuros – good bad, indifferent…

I am curious to know what Neuros are at the cutting edge including hospitals and to also avoid others that are just riding the waves of successful days gone by…….

I have seen two thus far, first one I thought was going to kill me himself, we actually had rows, a cold blooded nutter but smart… at the outset this chap told me I probably had a royal flush of bad things, cancer, etc. etc. and ce la vie – told me this as IT guys were trying to fix his PC so he could view my MRI 🙂 patient privacy, empathy, professionalism I hear you roar 🙂 well thats what I roared back at him as the Round 1 commenced….

BTW – this chap is renowned as far I as I can tell from my R&D….. he might be smart but his bedside matter lacks….

anyhow on to Neuro number 2…

The second chap is also good on paper, but jury is out, seems a little too optimistic and relaxed for my liking, everyone to their own….

Lets see how he goes when I see him next time, new chapter, see what he has to offer….

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potter
2 years ago

My neuro is very stiff, doesn’t believe that vitamins for changing your diet makes a difference. He believes in the DMT’s, to be fair he isn’t a MS neurologist. The closest one of those we have is 200miles away and it takes over a year to see one. It is even hard for me to see him once a year. It is impossible to change neurologist because of the waiting lists. He is fairly young and kind of looks like Obama, he is from India. Potter


seanachai
2 years ago

I think I am lucky Potter being in London, spoilt for choice !


potter
2 years ago

Yea you MSer’s in England have a lot of choice in doctors, hospitals and DMT’s. I can only choose DMT’s from the list that my insurance company will pay for. My husband is retirement age but he keeps working so we can buy fairly decent insurance. Once he retires my Tecfidera would cost me $5,000 a month, we can’t afford that. There is research going on right now trying to decide if MSers should be taking a DMT if they are over 60 and haven’t had a relapse in 5 years. I am going to quit in a year when my husband retires, the research going on right now doesn’t conclude until 2020. Can’t wait that long, I want him to have some enjoyable retirement years. Potter


stumbler
2 years ago

@seanachai , there are some Neuros and there are other Neuros. Bedside manners may change directly from day to day, dependent on existing circumstances, e.g. PC playing up. So, don’t prejudge, tomorrow may be a different personality.

I’m glad you didn’t name names, as this could leave the Forum open to legal ramifications regarding privacy and potential defamation. Names can be exchanged, but must be done in Private Messages. 😉


arknat
2 years ago

@potter,

I’ve been thinking along those lines as well. How long would I need to be on these DMT’s which cost a fortune w/o insurance. As of now I’m insured and on Gilenya. I’m looking at treatments like cladribine (not available in the US yet) and lemtrada which eliminate dependencies on DMD pills like Tecfidera, Gilenya, Aubagio etc. that have to be taken all your life.


isaacson72
2 years ago

Sounds like I’m the oddball one here… I love my neurologist. He is an MS specialist based in Seattle, WA. I can see him within a couple of days if I need to. He responds to email within a couple of hours. He’s a big believer in vitamins, doesn’t push the DMTs (strongly encourages, but believes it’s the patient’s choice). I come to him with long lists of “is this MS? How about this?” and he is so patient explaining why things are or aren’t MS related (I’m still new to this, just diagnosed 2 years ago). I absolutely love him.


cameron
2 years ago

I’m sure by the time you get to see him again you’ll have done enough reading to know if he’s up to date by the answers he gives to your questions. Have you discovered the Barts blog yet? A daily read plus a trawl through their archive on (e.g.) the various DMDs should do the trick! All the best with this.


nutshell88
2 years ago

I agree with you @potter
I don’t believe in diets v/ vitamins to be so effective or highly important with MS
personally I suffer bad apetite by nature and my weight is less than my 12 years old cousin lol
For neuro my first neuro was majestic he was in a private hospital Saudi couldn’t keep him far so he was requested to work in a governeng hospital in Riyal i only saw him twice
But for the DMT my doctors always feel furious
I know unwise to leave a brain with atrophy without a DMT but its a personal choice!


seanachai
2 years ago

hi nutshell

I am encourage you do more R&D on diet and potential impacts to MS. You are probably right with regard to initial triggers and predisposition to MS etc. I think as humans we will always have medical challenges and I don’t think any diet is going to fix all that but it may help someway in severity, dealing with it and managing it ….at a minimum. There are are studies out there regarding diet that suggest diet may in fact have positive impacts on the brain and maintenance in general post and possibly pre MS.

Check https://www.ncbi.nlm.nih.gov/ for studies on topic, I have found a few there before.

Personally I believe the Keto diet or at least a moderate version thereof is the way to go, not just for MS but for health in general, many diseases including cancer show promise on this diet (do R&D), maybe not cure but do help a lot. A lot of effort is going into studying to understand the positive impacts of the Keto diet in general and I think we will hear more in this space in next few years. As with all these behaviours and lifestyle changes that are “free”, no major phara will get behind the studies for obvious reasons.

Thanks


potter
2 years ago

Nutshell I do believe in DMT’s to a point I am a lot older than you and they are researching MSers over the age of 60 should be on a DMT’s I am 65. I had two aunts that has MS when there was no treatment for it. One of them died at the age of 50 from brain atrophy, what she went through was horrible. When I was diagnosed with it I wanted to slow down my MS as much as possible. You are still young, did you talk to your Neuro about the half doses of Tecfidera? Potter


celan2go
2 years ago

My experience with neuro’s is 1 for 3. The one who diagnosed me sent me a letter chastising me like a badly behaved child because I left an appointment not knowing it wasn’t over, and informed me he couldn’t be my neuro. The second one handed me a grocery sized bag full of info about MS meds and told me to pick one. I chose not to go back. I finally got my neuro when I had my first (and only) relapse. I didn’t have a neuro at the time (2004), and I believe my PCP called one he knew who is affiliated with the hospital I was in. And she’s been a wonder! I read on a forum elsewhere, about a patient of hers who had to wait a year for an open, first time appointment . She’s hot stuff! Very big in the MS community as a researcher, advocate, authored/ edited several books. I had no idea she was as high powered as she is. Unfortunately I heard a rumor that she’s retiring soon. (She’s at least 77, so it’s not surprising) And that will be a great loss when she retires. She’s been my MS angel since 2004.


cameron
2 years ago

@celan2go – Never mind, she’s set you up and you’ll never forget her wise words. When my (extraordinary) physio left the area, it felt like a bereavement, but she’s given me the knowledge to make clear decisions about how I need to live my life. Can’t really ask for more than that!


celan2go
2 years ago

Cameron, I know I’m spoiled, having the sheer blind luck to have ended up with my neuro. Also living in a medical Mecca (the greater Boston area) is very lucky. (Expensive, but it’s the price of admission.} Like I said her retirement is a rumor, I haven’t heard anything from her about retirement, although it’s inevitable given her age, It’s a winder she’s still practicing at her age. She is very dedicated to her patients and as an advocate (in Washington) for MS. I’ll enjoy and be thankful for the years I’ve had.


vicy
2 years ago

Luckily my ms is fairly stable, although I’m now secondary progressive, I see the neurological support nurse every 6 months, the neurologist I saw in the beginning at diagnosis had the bedside manner of a wet haddock! Relieved to see someone sensible now.

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