Mills Syndrome?

[Seahorse714]

Hi I am new here. I was diagnosed with Mills Syndrome last week and cannot find hardly anything on the Internet about it. Does anyone know of a sight or have general information on this?

 

[gooseberry]

Everything I am finding says Mills syndrome is an outdated way of describing an als variant. Sorry to be welcoming you to the gang.

 

[Nikki J]

Is it not a unilateral Upper motor neuron syndrome? I believe Green Queen is suspected of having this? I am sure she will chime in. And I thought perhaps incorrectly it could be from a few different pathologies one of which is PLS?
Seahorse where were you diagnosed? By a neuromuscular specialist I hope? Have you had a second opinion? I would certainly insist on one in your place

 

[Seahorse714]

I was diagnosed at the University Of Miami ALS Clinic by the director of the Als research team. He was my third opinion. The first Dr is my general neurologist. My second opinion was another Dr. at UM that suspected MND but said we would just have to wait and see. Then I finally ended up at the Director of the ALS clinic who said I don't think you have ALS. You have Mills syndrome.

 

[Seahorse714]

So what does that mean exactly? What's the prognosis with this?

 

[Nikki J]

Dr M B ?He is an excellent diagnostician. Did he say yours was a version of PLS? In general PLS is not considered fatal but I do not think any of us could possibly give you a prognosis. Ask dr b Sometimes you have to tell him what you need to know. I think he is more likely to respond to specific questions than give tons of info unsolicited in my experience. And he is not going to guess. Sometimes it is wait and see

 

[Green Queen]

Seahorse! Hello! I'm so very very very very very happy! Not for you...for me! I have mills syndrome apparently. It's taken over a year and a heap of other 'maybe' answers, but here I am, one appointment away!
I'm so sorry you have this, but I'm so glad we have each other to share with...I truly think it will make a difference to (my) state of mind. This forum is awesome for friendship, advice, understanding...
There is hardly anything to read that makes sense. I've been contacting all the Neurology places for clear, concise information. I will share whatever I find.
God bless, Janelle x

 

[Seahorse714]

Dr M B ?He is an excellent diagnostician. Did he say yours was a version of PLS? In general PLS is not considered fatal but I do not think any of us could possibly give you a prognosis. Ask dr b Sometimes you have to tell him what you need to know. I think he is more likely to respond to specific questions than give tons of info unsolicited in my experience. And he is not going to guess. Sometimes it is wait and see

Yes Dr. MB. To tell you the truth the conversation was foggy because I took a Xanax and a klonopin before the EMG and Nerve Conduction procedure to try and relax because of the stiffness in my leg. He wants me to join this research study but I live 150 miles away. He also wants to do a spinal tap.

 

[Seahorse714]

Seahorse! Hello! I'm so very very very very very happy! Not for you...for me! I have mills syndrome apparently. It's taken over a year and a heap of other 'maybe' answers, but here I am, one appointment away!
I'm so sorry you have this, but I'm so glad we have each other to share with...I truly think it will make a difference to (my) state of mind. This forum is awesome for friendship, advice, understanding...
There is hardly anything to read that makes sense. I've been contacting all the Neurology places for clear, concise information. I will share whatever I find.
God bless, Janelle x

Hi Green Queen. So glad to meet you too. I will send you a private message if I can figure out how. If you know how please do so. I am new to this site and just starting to figure it out.

 

[Nikki J]

I believe they pay travel expenses? Mileage? Aside from helping you can use the research visits to learn more yourself. And btw Dr MB is REALLY good at spinal taps. Good luck

 

[Seahorse714]

I believe they pay travel expenses? Mileage? Aside from helping you can use the research visits to learn more yourself. And btw Dr MB is REALLY good at spinal taps. Good luck

Thanks Nikki for all your help and advice. Glad to hear the great things about Dr MB.

 

[Green Queen]

Hi Sandi
Hope you are going ok. Made any decisions on the spinal tap? I've never had one, so I can't give you my thoughts on it.
I am back to being frustrated and annoyed...everyone seems to think I look fantastic when I feel this way...may have to keep being annoyed!
God bless, Janelle x

 

[Gembead]

Hi seahorse,
It must be so very frustrating not being able to find information easily to know what to expect and what progression may look like. Sorry to welcome you hear but you will be among friends, glad that Green Queen is hear to hold your hand.
Love Gem

 

[Jellibean]

Hello
I'm from the uk and my husband was diagnosed with mills variant or syndrome yesterday.The consultant said it was very rare and I can't find much on the Internet? What is the score with it? All I can find is it affects one side only as is not as progressive as other forms? Consultant did mri, electrical and nerve tests, spinal tap and loads of bloods just to rule out anything else.. We still have some bloods to come back. Any info would be greatly appreciated. We feel so alone and in the dark with it all.

 

[Jellibean]

Green queen if this is the sort you have please will you message me too? I'm new to this site so not fab at negotiating it yet. Thank you xx