Multiple Sclerosis Community
Primary Progressive MS Symptoms??
About This Community:

Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.

Font Size:
Blank Blank

Primary Progressive MS Symptoms??

Hello All,
I'm a 39 year old active male suffering from a build up of neurological symptoms since the summer. In late July, I felt a tingle running down my right arm which I thought was caused by a pinched nerve (I was traveling during the time). It stayed with me until I came back home in August. From then on, a whole series of symptoms emerged. I felt a heaviness in my chest and the tingles now shifted to my left arm. Thinking it was a stroke, I was rushed to emergency. Before the doctor got a chance to check me, the sensation cleared up, but the weird feeling in my right arm remained. The doctor had me x-rayed and was given a sedative. They told me it was anxiety. During the next few weeks, I felt burning sensations down my spine, shoulder blades, and down my arms. By September, the feelings burning and cold sensations have spread down my legs. Also, I've had that "sick" and heavy feeling that went on during certain days. I've also felt acute pains that I would feel for seconds and sometimes minutes - then eventually disappear. However, there's also pain and aches that I now feel almost everyday. My body also feels weird when I take warm showers.

Since August, the symptoms have been unrelenting. I've seen a GP and a neurologist has asked for an MRI of both cervical spine and brain.

Right now, I feel it more in my legs, feet, and arms. For my legs and feet, there's an increase in parasthesia with regards to the cold limb feelings. Also, my feet and lower legs are beginning to stiffen up after walks and exercise. I'm afraid that foot drop will settle in any moment. I can no longer walk long distances, and if fatigue sets in, I'm beginning to drag my feet. I've also had days wherein my voice sounds weird, and I seem to have excess saliva in my mouth. My left arm also gives me the occasional burning sensation and I regularly wake up with pins and needles with both of them.

All of these symptoms are within a span of 4 months. I live in Canada and we need to wait with regards to medical attention. I've considered many times to go to emergency however, my GP already told me that there is nothing "clinically wrong" with me since my blood tests are clear. Also, my neurologist needs to wait for my MRI which isn't till January. Meanwhile, I

I'm a teacher and each day gets difficult with worry. I've been taking homeopathic remedies to soothe some of the symptoms. However, every day in limbo is getting to be difficult. Due to my age and the late onset of symptoms, I'm concerned that it's symptomatic of primary progressive MS. From what I've read, it should be a gradual build up of symptoms. Why are my symptoms building up so rapidly? Is there a chance that it's another disease that mimics MS? The thought of ALS also concerns me given some of the symptoms as well.

Sleep has been difficult due to anxiety and the symptoms. At the moment, I'm trying to get onto the emergency list for MRIs but they're full every week. I'm pondering getting myself checked out in the States, but the price tag will be huge and I still need to wait for treatment here in Canada.

Any thoughts? Thanks for listening....I'm just feeling really down and helpless.
Related Discussions
19 Comments Post a Comment
Avatar f tn
Check your diet the 13 names of MSG.  This could have a great impact on your MS.  Start a detox....research top 10 foods that detox.  Alkalize your body with Wheat Grass.  Know every chemical that is going into your body.  Aloe will help with any inflammation.  Research the dangers of microwaving foods. Hope this helps!
1466984 tn?1310564208
So sorry to hear what you are going through.

I too have been suffering from similiar symtoms (symptoms) - numbness, tingling, fatigue, difficulty with concentation and etc etc .....

Sounds like you are right in working with a neuro and  getting and MRI of brain and spine.  

There are many mimics of MS, and one thing I have learned through this process of trying to figure out what is wrong with me is patience.  I also have learned that there are still many unknowns about MS.  Have you been tested for lymes disease?

I wonder if you could talk to your neuro about other mimics that he may be able to rule out while you are waiting for you MRIs?  And could you discuss your sleep issues?   Perhaps he could help you manage some of your symptoms as you wait for the MRI?  If this is impacting your life in the way you describe, you need to push for help now to manage symptoms as you pursue what is going on.  

I live in the US and I'm not sure things would go much quicker for you here....

I am also a teacher, and have been out of med leave since last February. I know how hard it is to teach when you have your symptoms.  It's such a demanding job....I teach 6 year olds -  

Make sure you keep good lists of your symptoms to share with docs.

Best of luck to you and I hope you feel better soon!
645390 tn?1338558977
I am sorry you are not feeling well. There are many many different reasons for what you are feeling.  I wouldn't jump to MS, or progressive MS.  Be careful what you read online.  Also, the United States also can take a long time for tests and to diagnose.  Regarding MS, docs need to rule out all the mimics, which are plenty.

No one can diagnose you here, but I do hope you will be able to get the MRI and get some things resolved.  Sleep deprivation is a really hard thing to go through as well.  Can you PCP give you anything to help?

Thinking of you,

572651 tn?1333939396
Welcome Fenside, I hope the information here will be useful to you.  We are not doctors here (except for Quix, who is on leave right now)  so take everything we say with that caveat in mind.

That said, what you are describing to me just doesn't feel like MS.  Your symptoms jumping all over your body from upper body to lower limbs and so forth doesn't fit the MS pattern.  Our symptoms occur because of the lesions and their location(s) determine where those symptoms will speak up and be heard in our body.  It would be a very rare case of MS to have problems all over the body, at least at the onset of the disease.

You are wise to recognize the anxiety you have over this - I hope you can find some diversions to help you while you wait for your MRI.  I understand how difficult it can be to wait while you feel your health deteriorating.  

Something is going on with you, it sounds neurological, and it might take a while to find answers.  We know nothing neuro is diagnosed quickly, it seems.

I hope we will see you around while you wait - this is a very smart community full of helpful suggestions.

be well, Lulu  

Avatar f tn
Also keep in mind that once you start repeating in your head that "I am sick" "I am sick", your body will follow your mind.  Start exploring HOW TO HEAL instead ....If one person listens to this and knows this is truth, HEALING CAN BEGIN.   It has been shown the power of the mind plays a crucial role in our health.  Have you ever heard what stress does?  Start relaxing the body throughout the day.  Relax until you feel all your muscles, organs, nerves relaxing.  Relax your mind at this time also.  Release all thoughts...all thoughts of sickness, negativity, etc.  Go to a place where you enjoy the most.  Once in this state, start training your mind to VISUALIZE being healthy.  Visualize your cells repairing, Visualize your organs in perfect health.  Read any article on the power of positive thinking or on how the power of your thoughts can heal anything wrong in your body.  Aloe Vera is great for any inflammation with the body.  Research this.  Keep in mind the chemicals you are putting in your body.  Chemical overload leads to cancer, liver failure, etc.  Start putting yourself on the path of healing instead of a path of doom and despair.
572651 tn?1333939396
Yes, the mind does have incredible control over our bodies, but unfortunately diseases are not cured solely by positive thought.

MS patients know all too well the effects of stress on our body, and too often those stressors are external which we have no control over.  

Aloe Vera does nothing for MS or other inflammation of the central nervous system.  

All of us here with MS wish that studies had shown that visualization, relaxation, and aloe vera would cure us.  The studies show otherwise.  You can add bee stings and diet to the list of studied and unproven therapies as well.  If only life and our disease could be so simple.

best, L

738075 tn?1330579444
Welcome, Fenside.  

This whole search for answers is a HUGE practice in patience (yeah, yeah, how long does THAT take, LOL).  MS, ALS or any other degenerative neurological disease takes a long time to diagnose.  Mimics have to be ruled out.  In the mean time, check out the Health Pages (yellow icon, upper right of page). Maybe you already have.

Be as well as you can be.  Take good care of yourself.  Keep moving the best you can.
Good Luck

Avatar n tn
Thanks all for the responses. Sometimes it makes a difference just talking about it and letting it our of one's chest. To all teachers out there, we want to make sure that we give 100% to our kids. In spite of how I feel, I try to give them my all. I appreciate the warmth and support in this forum. I will heed your advice with regards to being calm and patient. It'll be hard I know, but I will try. I admire all your courage as you battle through this. I will most definitely keep you posted.
1394601 tn?1328035908
Anxiety seems like such a simplistic answer but it can wreck havoc in our bodies.  If you are suffering from it, I hope you receive some good medical care because without it even a slight pain becomes overwhelming and frightening.  I wish you well, fenside.
987762 tn?1331031553
I am thinking along the same lines as Lulu, from what you describe is happening, it just doesn't sound like MS. Sx dont travel around from one limb to another like that, the damage is from lesions, either in the brain or spine or both, sx are generated by where the lesion is and the parts of the body associated within that region. Think of your brain as being Canada, there are millions of electrical connections within each grid, if there is damage within a grid it doesn't take down other sections out side the affected grid.

You say you were traveling and first thought a pinched nerve, the countries you travelled could matter, what types of activities were you doing, carrying a full travellers back pack, bungie jumping etc. think along the lines of what, when and where. Can the right arm be from a pinched nerve and the rest be seperate, eg. a travellers bug or something you've picked up once you got home. From the way you describe things it sounds more viral to me, though I would of thought blood tests would of picked that up. I do remember having a blood test once that was fine, but i picked up a bug between the time of the test and getting the results, obviously sick but according to my WBC i wasn't, it happens.

The anxiety question, if you are prone to anxiety then it's possible, if your not then I think thats something to keep in mind anyway, keeping things in perspective and doing things that are healthy and relaxing are good regardless of if this is anxiety related or not, so can't hurt. Seriously, only you can work out if your reading about a sx then suddenly you now have that sx too, if sensations get worse the more you think and read about it, feeling anxious, stressed out or simply can't stand working when you'd rather be sitting on a mountain with flowers in your hair etc.

Looking after your mental health is never a bad thing to do in my opinion, regardless of if there is or isn't a disease at play.


198419 tn?1360245956
Hi there,

Thank you so much for trusting us with your problems. I sure wish I had a magic answer for you. We've seen here it's so difficult to navigate the Canadian HC system. I wish this were not the case.

I'm hoping some of our canadians will see this and send along their thoughts.  The symptoms you are experiencing are not normal by any means, and while anxiety can cause them, oftentimes it's the symtom itself that causes the anxt we get from the problem.  You regular MD is ignoring what you are experiencing, but I'm at least glad to know it was documented.

Ask this MD what is clinically insignificant about "numbness, burning, tightness" in your extremities. Ask him/her what could be the cause of this and why it's not being investigated.

So very sorry you are dealing with this. Can you bring someone with you and go back to this Dr.?  If so, be sure to tell this Dr that you are a teacher responsible for the education of children, your well educated and fully understanding that something is the matter and you are trusting he/she to get to the bottom of it. And, if this "something" requires a specialist then please refer you accordingly.

Thanks for joining us,
Hope we can help,
667078 tn?1316004535
I am no Doctor so I have no clue. Getting an MRI is good. If it did turn out to be MS and I am not saying it is. There is no treatment that has to be started right away so there is no need to panic. It often takes awhile to figure out what is going on. For some of us it takes years of tests. I thought I should be diagnosed quickly once I went to my first neurologist but it seldom works that way. I wish I had known what I know now then and would not have freaked out.

There are lots of possibilities and most are not life threatening. Take a deep breath. Tests are just tests. I have had many medical tests and most of what the Doctors were looking at never came to pass. The human body is complicated and there is a lot medicine does not know.

Good luck.


Avatar n tn
Hi All,
Again, thanks for all the supportive comments. My PCP has prescribed something to help with sleep and I got a follow-up appointment with my neurologist next Monday. I want to go in to my meeting informed. What other types of test should I ask for?

With regards to further describing symptoms, I feel a majority of them on my left side (arms and legs) with a few in the right. I can also feel tingles on my tongue and parts of my face.

What seems to be consistent for the past 3 weeks are the sensations of burning/cold, tingles, and numbness in some parts of my legs and feet. These sensations come and go. There's also mild cramping in my right calf, as well as a "pinching" pains in both hamstrings.

Again, both my feet are weak with regards to mobility. If it's a good day, then I move as much as possible (especially if I'm coaching or doing a gym lesson). If they're feeling fatigued then I take it easy. With regards to my arms and hands, my pinky and ring fingers are chronically stiff, again, the pins and needles in my arms and fingers I regularly feel in the morning when I wake up. The new one today is a shooting nerve pain going down my left buttock to my feet. This bothered me for most of the day.

Thanks again for listening, the insight, and reminding me to take a deep breath. After listening to all of you, I DO have to learn to be patient and just take each day as it comes while I figure out what's going on.

1521323 tn?1291730947

I am having the same symptoms almost as you.  My troubles have seem to explode since Oct 2nd of this year.  I did have an MRI of the brain and I do have lesions, negative spinal tap though.  I am having an MRI of my spine this week.  

All the meds they have tried make me impaired or groggy.  I am on my second round of steroids in the last 6 weeks and since I am tapering down the symptoms are coming back doubled.  

Originally the feeling of ice/burning started when I was in bed.  I woke up for no reason and lifted my head to see the clock.  I got a sudden feeling of ice being shot up my spine, into my neck, then through my head into my forehead which lasted about an hour.  It came and went in my neck an dhead for a few days.  Then I started with muscle spams in my left foot and calf.  Then pain in my left hand.  Any exercise or stress caused the numbness and cramps to worsen.  THen the ice burning would travel up and down my left leg and under both feet.

Since then the burning has traveled down the left side of my face, thats gone now.  It stared bilaterally in both shins for a couple of weeks.  Occasionally my right rib area and right flank.

This week I have the burning all both arms.  Muscle cramps that started just in the right arm and now burning/ice in both arms and legs.

I am very frustrated, feel like I am losing my mind.  The neurolgist response to me today was..."keep taking your antidepressant and do the MRI on THursday".  Not very reassuring.  

Sometimes in the last few weeks I would wake up in the middle of the night like I am on fire/ice.  It is so scary to be here alone with my daughter and you think something is terribly wrong.  

I will keep you posted on whatever I learn.  It is ashame you have to wait until January for the MRI.  And its ashame that this takes so long for all of us to figure out what is terribly wrong with us

Avatar n tn
Hi I just wanted to say that as a Canadian (Ontario resident), I completely understand your frustration with our system.  If you can afford it, try to go to the US.  I heard MRI's are $4000 each but then you have to pay for a doctor who will interpret the results too.  

Just one example of how bad our health care system is:  My friend has a skin lesion that meets the criteria for skin cancer and it keeps bleeding and growing, and yet she cant see a dermatologist to remove it and test it for skin cancer until MARCH of next year.  Ridiculous. The cancer will probably spread to her other organs by then, but apparently there is no such thing as "emergencies" in Canada.  You just have to wait and be lucky the problem you have doesn't progress.  
Good luck!!! stay strong!
338416 tn?1420049302
Hey, it looks like nobody really answered your initial question - whether this was a sign of primary progressive MS.

PPMS manifests as a constant, if slow, progression.  Usually it involves losing strength in the arms and legs, rather than paresthesia.  There is no remitting of symptoms with PPMS, so there's no time at which you feel better.

I don't know how it is for other people with MS, but when I first started having symptoms, they were in several distinct locations, and involved different problems.  My right leg was weak and numb, the right side of my face buzzed and tingled, my right arm was weak, the fingertips of both hands were numb, and I had pains and spasms around my torso.  I thought that perhaps I had PPMS as well, because there was no break between symptoms - it just kept getting worse.  After things settled down a pattern of relapsing and remitting set in, and I began to notice when I fet better.

So the real answer to your question is that nobody is diagnosed initially with PPMS.  At least as far as I can tell.  The neurologist willl look at a history of your symptoms and track your progression over a period of years, and if it looks like there's no remitting of your symptoms, then he'll likely diagnose you with PPMS.  But if you're diagnosed with PPMS, you're regarded as a hopeless case.  Doctors will often diagnose you with RRMS even if they think it's PPMS, just so you'll be able to get your health insurance to treat you.

39 fits in the average age of onset for RRMS.

I would recommend writing a timeline of your symptoms, when they appeared, how long they lasted, and when it went away (if at all.)  This will help the neurologist track dissemination in time of your symptoms.  

I would also ask the neurologist about an MRI of your cervical and thoracic spine.  With pains in  your legs, it's possible there's something going on in your spine.  Call and get this set up ASAP - maybe they can get something else set up in January.  Also check the strength of the MRI you're scheduled for.  Here in the US, you're as likely to be scheduled for a .7T open-bore MRI as for a 3T MRI.  The open-bore machines are basically useless for diagnostic purposes.

All this being said, anxiety and worry does not help you.  You need to find a way to deal with it, or it'll take over your life.  Best of luck!  It could be something quite simple, like a pinched nerve in your neck.
1312898 tn?1314571733
I have been diagnosed with PPMS twice and have also had the diagnosis 'taken away'.  But that is the process of being diagnosed for some of us.

My symptoms began with a numb chin, big problems with proprioception, electric shocks from neck down to legs, severe pain and spasticity.  The fatigue and weakness is just astonishing.  Also vision problems.

So, about 1 1/2 years ago I went from going to the gymn everyday to using a walker, unable to drive and going towards that power chair sometime soon.  

There are plateaus where you level out and the pain and spasticity don't spike very much.  

There are different theories out there about PPMS.  One is that it is a different disease than MS.  As far as the 'progressive' part, that is something that a doctor will see over time.

I hope you get answers soon'

That's been my journey anyway.
1453990 tn?1329235026
2005 Revised McDonald Criteria states:

One or more Objective Lesion AND
Disease progression for 1 year (retrospective or prospective) AND

2 out of 3 of the following:

Positive brain MRI (9 T2 lesions or 4 or more T2 lesions with positive VEP)
Positive spinal cord MRI (2 or more focal T2 lesions)
Positive CSF
667078 tn?1316004535
I have PPMS but was not going to jump in there with PPMS because it is way too soon for anyone to go there with you.

PPMS is not hopeless, it just can't be treated the same way as RRMS. They are doing research for the first real treatment at this very moment. I have had PPMS for over forty years and am doing better than most folks with MS. I hike, ride horses, and do almost anything I ever did although with a bit more care.

First off no one knows what is wrong yet so you do not have to anticipate the worst case scenarios and get yourself freaked out. I did that. Second if it is MS no two cases are alike. Some people have lots of problems other people like me go most of there lives with out real difficulty.

The health pages to the upper right have some great info.


Post a Comment
Weight Tracker
Weight Tracker
Start Tracking Now
Multiple Sclerosis Community Resources
Top Neurology Answerers
667078 tn?1316004535
Durham, NC
198419 tn?1360245956
987762 tn?1331031553
572651 tn?1333939396
Dayton, OH
751951 tn?1406636463
Caledonia, OH
5112396 tn?1378021583