New here- waiting for diagnosis

[kag0909]

Thank you. He is going to Johns Hopkins to see a specialist for his tremors ( he has always had them, they have just gotten worse as his walking problems arose). Thanks for the advice.

 

[billbell52]

Sorry to hear about your dad. PLS is extremely rare and most doctors will never see a case in their career. I was only able to get a diagnosis after going to an MDA/ALS clinic. They had several other PLS patients. Tremors are not a symptom of PLS.

 

[kag0909]

Yes- He has always had essential tremors. They are getting worse probably from the stress he is under due to not being able to walk. At least that is what the doctors are telling us.
Where can we find a list of MND specialists? It is so hard to weed out all the names. Right now, he is just under the care of a neurologist.

 

[Green Queen]

Oh wow cammarak, me too! You know, thought I'd get better. I had symptoms for two years before they suddenly became too bad to 'hide' and now 18 months on from that, here we are.

Which brings me to you Kags. Unfortunately PLS is eliminating other things. I have been through all sorts to get here. I have now had a physician and two neuros say it's either PLS or a variant of that called Mills Syndrome. I'm seeing an excellent Neuro in Sydney in 35 days, but who's counting...really hoping he will give me final diagnosis. As they like to rule out ALS I've been told five years until a diagnosis. I've never had a dirty EMG so here's hoping...

One thing you can do to help your mum is shoo her off to bed for a rest when you visit. Not all the time of course, you would be a good judge of whether she needs rest or not. She will no doubt appreciate a good sleep knowing your dad is well cared for in her absence. Then get cracking on some folding, sweeping the floor, something that she won't have to do later.

I find it extremely difficult to ask for help, so if it's done for me without asking...awesome.

And listen. Let her cry, grumble, rant and rave without judgement. She will really appreciate that. You could do that for your dad, too.

All the best, Kags. We are all here to listen and support however we can.

God bless, Janelle x

 

[Cammarak]

Ask your dad's neuro for a specialist--or ask john's Hopkins --someone can give you names of specialists. My surgeon sent me to friend of his, and then a rival, and then finally to the Dent neurological center, where I currently go because I kept insisting that I needed answers! Don't quit asking until you get answers. Also,I too have essential tremors. Although not part of PLS, as my dr says, "no one completely understands the workings of the brain" and it can all be somehow connected. You can have several different things going on at the same time.

 

[Trippy]

Nicholas Maragakis is an ALS/MND specialist at at John's Hopkins--I saw him twice. Hope you get some answers.