Introduction
 

Hi, I’m a 30 year old woman with a rare neurological disorder. 10 years ago my diagnosis was suspected hereditary spastic paraplegia but now I’m thought to have early onset pls as my symptoms have progressed. I have lost many abilities slowly over the past 10 years and my spasticity has increased immensely over time. I feel very isolated as a young person dealing with illness that generally effects older people and look forward to connecting with other community members.

Welcome Galaxyofdaisy. :Wave-Hello: Someone will be along.

Welcome
 

Welcome, Galaxyofdaisy!

So sorry you have a disorder that brings you here but it might be some comfort to find people who are coping with neurological disorders of one kind and another.

PLS = primary lateral sclerosis? NeuroTalk doesn't have a forum devoted to that rare disorder but you might be able to find some people with it or past posts about it.

For instance, I found these:

https://www.neurotalk.org/search.php?searchid=3633402

Yes PLS is primary lateral sclerosis. Thank you for the tips.

Hi, I am Robert I signed up a while a go but never posted until now.. I was told the pain in my legs about 17 years ago was Buerger's Disease. It is a disease only people get who smoke or chew tobacco. Where it blocks the small to medium blood vessels with small clots. Then the new Vascular doctor last year said it was Peripjeral Artery Disease, 75% blood flow in my left leg and 100% blood flow in my right leg. The back doctor said it might be pain from my back cause my legs and feet to hurt, the pain doctor, said it was my muscles, my regular doctor said it was Restless Leg Syndrome or Raynauds. Then one doctor said it could be Peripheral Neuropathy. Now I am all confused as to which it is. I have tingling in my legs and feet which is worse when I am at rest also pins an needles, stabbing, burning, when resting and sometimes when walking, pain in my thighs when walking sometime pain in my hips and butt when walking and sitting, pain in my shines and pain right behind my knees, mostly when I am sitting. I know this is not a place to get a diagnoses since we are not doctors and since most of us have Peripheral Neuropathy, what does it sound like. I keep telling my regular doctor all the different types of pain I have in my legs and he just says it is Peripheral Neuropathy without doing any other tests to see if it could be something else or rule them out. It is like when I sit my left foot really tingles and vibrates to the point if I sit to long and try to go to bed it takes me hours before I can fall asleep because of the pain. Thanks for ltaking the time to read.

Welcome, aokayre or Robert!

You've had so many diagnoses that I'm wondering if maybe you should consider a different route. Instead of asking what the name of your disorder is, maybe concentrate on finding ways to get rid of it or at least to cut down on your misery?

You've probably been doing that all along and have found some things that help--the best positions to sleep in, the best kind of chair to sit in, whether walking makes it worse or helps, and whether changes in your diet or some medicine you've been taking might make a difference.

I have similar problems with burning and pain, sometimes a sudden sharp pain, sometimes a persistent ache. I try not to go to doctors about any back-related pain because it seems as if most back problems aren't helped by the solutions doctors offer (surgery, for instance).

We all develop back problems as we get older. You don't mention your age but even a fairly young person can start having some problems of aging. I remind myself that my back problems are probably age catching up with me and that everyone starts to wear out sooner or later--but I do try to find ways to deal with the pain, burning, stiffness, etc. Swelling is a trickier problem to tackle and might need a doctor's attention.

It sounds as if you've ruled out Buerger's disease, perhaps because you don't smoke? If Buerger's disease might still be a possibility, it's pretty serious and definitely not something you should ignore:

Smoking and Buerger’s Disease | Overviews of Diseases/Conditions | Tips From Former Smokers | CDC

I hope you will find some useful answers soon. You've had to go to entirely too many doctors.:confused: