Aa
Aa
A
A
A
Close
1689801 tn?1333983316

Who of you have PPMS?

Also the ones that are not still diagnozed, and how long since you had your first symptoms? Started with tingling, pain or..?
6 Responses
Sort by: Helpful Oldest Newest
667078 tn?1316000935
I have PPMS I have had it since I was five. I was not diagnosed until I was 46. That said the neurological brain damage was never in question, just the cause. It usually does not show up until late 40's or 50's. I did not know anything was wrong until now at 48. I am having trouble walking. It has been my Doctors who found bad Neurological signs. I have had symptoms all a long they have come on so gradually I would not have really noticed until now. Even now I would have thought it was do to hard manual labor.

My first signs were trouble swallowing and double vision at the age of two, I was hospitalized. The swallowing has come and gone. The vision is permanent. Then I had vertigo, left side weakness, cognitive issues, migraines, and depression permanently before the age of five. My parents either did not understand or care so I was expected to live a normal life so I did.

I did not notice the tingling so when I was sent to a Neurologist in 2007 I did not bring it up or any of my other symptoms. I did not know they weren't normal. I had pain, tingling, zaps, vertigo, etc.

I do notice I am now losing the use of my left leg more and more. I also notice my hands are being effected.

All the MS Specialists I have seen think in my case it is simply a watch and wait thing. I am not on any of the treatments. For me I agree with them. I do not have new activity on MRIs it is old damage.

Alex
Helpful - 0
1689801 tn?1333983316
This is a really good summarize of all your long story, Alex. I sure would like to see more peoble tell how PPMS has been for them. It would be educating to see how different it can be.
(Sorry about my English)
My best to you all,
Dagun
Helpful - 0
667078 tn?1316000935
Your English is fine. I do not know any Icelandic. May be you could teach me some basic phrases? I would love to go to Iceland some day if I ever get the money to travel. I especially want to ride an Icelandic pony and see the Glaciers.

Alex

Helpful - 0
1437229 tn?1296070020
I have Primary Progressive MS,  I was initially diagnosed in July 2010, with a final diagnosis this past February.

My MS was triggered when I was assaulted by a student in the classroom I was substitute teaching.  I sustained a closed  head injury.  So, it is somewhat difficult to differentiate between that and the MS.  I instantly had a blinding headache which led my doctor to order an MRI of my head.  That is when the many lesions were found.

My first symptom was probably a loss of balance.  It was severe.  Weakness in my legs was next, and that has been the main problem.  Along with that, I have bilateral footdrop I am now in a wheelchair due to that weakness.  I have had speech issues, and some other things.  I also have spacticity, and pain for which I take medications.

After robbing me of my legs it appears to have slowed in its progress.  I hope it stays that way.  I try to continue to keep as strong and limber as possible, both physically and emotionally.

Most sincerely,
Beth
Helpful - 0
199882 tn?1310184542
I have PPMS... I started having symptoms right after my 3rd child was born... It was several years later before I was diagnosed... I didn't realize I was having symptoms at the time... I just thought I was clumsy...lol... When I actually went to the doctor for it I was having numbness and tingling in my wrist and arm... It seems like after that initial visit my symptoms really progressed rapidly...

Every day it seemed like I would wake up with a new symptom... It had everyone baffled... My PCP was actually the one who brought of the idea of MS... I often wonder had they diagnosed me with MS way back when symptoms first started if I would be better today... I was in a wheelchair before finally getting diagnosed...

I'll be praying,
Carol
Helpful - 0
1689801 tn?1333983316
Thank you all for your comments :). I did not realize that MS could be triggered by an assault, that is awful. But why, Carol, do you think you would be better today if you knew earlier? Is there a medicine, you have been taking or is it because you would have started some kind of exercises or program earlier?

Alex, yes the glaciers are great here and the horses are so beautiful, and so much, much more. So if you will be here one day, you need ofcourse to start your Icelandic lessions ;).

Shall we begin with:
Hello=Hallo
Good morning=Godan daginn
Horses=hestar
Best regards=bestu kvedjur
Nice to meet you= gaman ad hitta thig

Ok, you're done for the day ;)

Bestu kvedjur,
Dagun

Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1331027953
Australia
5265383 tn?1483808356
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease