The MD / MS War is on.....

Everyday living
1

Hello,

I have read many posts and learned much. Thank you to everyone here and sharing your stories. I am 42 year old male with unknown type of MD along with MS as well. Not entirely sure where to start. The MD / MS war is on…

I was diagnosed with muscular dystrophy at age 11 which has not caused mobility issues until my mid 30’s, and diagnosed with MS at age 39 but cannot tell which one is now causing the mobility issues. MD is muscle tightness and fatigue, unbalanced walking. The diagnoses of MS and newly blurred vision with ringing ears, vertigo symptoms as well…I cannot decipher which disease is causing the muscle weakness and daily fatigue to worsen even more in the past year. Having been diagnosed with MS more recent than MD is giving me an opinion, but I really don’t know. Reading the posts, I also learned about relapse symptoms but, once again, cannot decipher since muscle fatigue are factors in both, and I haven’t had a relapse (that I am aware of). My MS doctor doesn’t want to grasp MD and vice versa, but neither have had a patient with both so I kind of get it. I really do not know where to steer the ship anymore, which is causing mega anxiety daily. Does anyone know or have an opinion on the best specialized doctors on the planet?

Thank you,

Mark

2

hi mark

wow you greedy monkey, having two long term conditions when most people only have one!

seriously, why not look outside of medical treatments and try an alternative therapy.

these won’t cure anything but can give a sense of well being.

concentrate on that sense of well being and hopefully it will take your mind off your painful symptoms.

i have tried reiki, osteopathy, aromatherapy, HBOT, acupuncture and others.

HBOT is Hyper Barric Oxygen Treatment is breathing pure oxygen through a mask in a decompression chamber and promotes healing.

these therapies will ease both of your conditions and is an enjoyable experience so you come away with a better frame of mind and even a smile.

mindfulness meditation has been a life saver and is well worth a try. it will help you with your anxiety.

let us know how you get on.

good luck

carole x

1 Like
3

Hi Mark

I agree with what Carole has mentioned about focusing on your wellbeing. Has your neurologist said what type of MS you have?

You may already have come across the Barts MS Blog by Prof Giovannoni and Team G at Barts Hospital, London. It’s well worth a look and has helped me a lot. Prof G feels it is important for RRMSers to get on a DMT soon after diagnosis.

4

Blimey Mark,

double bubble, as if one of these conditions is not enough, the replies so far make sense to me so all I can say is all the best. Mick

5

Poor you. I’d advise seeing Dr Giovannoni at Barts as well - he and his team seem to be several years ahead of the other doctors. But you might try for Professor David Compston. He was awarded a CBE for his work on MS, a week ago (I think for work on Alemtuzamab, but not sure about that).

6

That’s a really tough one. I can understand the MS specialists not wanting to take on your MD as well as MS and vice versa. I wonder if there is anyone else out there who has both? Maybe one of the silent people who don’t post might send you a PM?? I get why people are steering you towards Dr Giovannoni, either his blog or in person, likewise Dr Compston (I think he did do Alemtuzumab) but failing either of those, you probably need a good open minded doctor who is able to communicate / cooperate with a MD specialist. I don’t know if there’s anyone on here who could guide you to such a person, equally, it does depend on where you live. Maybe your best bet (failing someone actually knowing a doctor who can help!) is to ask your MS nurse, if you have one, for help. He/she will at least know the characters of the MS specialists in your area and might just take up the challenge on your behalf??

Sue

1 Like
7

Sounds like another turf war!

I did not know about the similarity between MD and MS, but there is about a 75-80% similarity of symptoms between MS and Parkinsons (my wife has PD), and the diagnostic approaches are different. I also note that as my spasticity gets worse, there is are similarities of limb movement between myself and a former student who had cerebral palsy.

So there are four conditions with a lot in common - and they will nowadays need four different consultants. We regularly advise newbies to “get to see an MS expert”, but maybe what we all really need is more “experts” who talk to other “experts”.

My wife has a neurology nurse who visits (and does Parkinsons and MS both), but at the hospital I attend, the MS nurses are not allowed to visit in the community.

Think about it

Geoff

8

I think going to the best possible specialised doctor is a good strategy - because they are likely to be bright, have lots of medical knowledge and (hopefully) be prepared to use connections with other medical experts. Obviously people on here are much more likely to know about good MS doctors than good MD ones. Is there an MD chat room, where you could ask the same question?

1 Like