Not Sure if PPMS, though seems like it :(

[CarpeDiem2015]

Hi,

First time poster - many thanks to those that started this site and everyone who participates!

I feel like the sands of time are now at a fixed amount for me, and am a bit overwhelmed by the long-term prognosis (am late 40's now). I go from where I want to seize the moment to then crying about what looks to be down the road. Does the below sound like PPMS, or another type, or ALS? My recent history has been:

- 2003: possible environmental / virus trigger that preceded feelings of a shock/electrical down spine. main symptom at this time was heavy muscle twitching in calves over many weeks. MRI clean; neuro tests (EMG) fine.
- 2009: brief week or so episode of eye blurriness; some swallowing difficulties. went back to same neuro as ALS was main concern. clean clinical exam with neuro. did not think to see an eye doctor. eye problem had cleared up by the time I saw the neuro.

- 2014
- Summer: urinary problems noticeable
- Summer: exercise becomes a lot harder; less intense
- Fall: experienced two days of intense fatigue. about the same time spasticity in right leg; gait became abnormal. gait has improved though still noticeably off
- Fall: slight weakness in upper arms

on one hand it seems I might have minor flare-ups; on the other hand seems like I'm presenting with PPMS symptoms (? urinary, gait). eye / urinary not usually present in ALS; though all of this is confusing.

I have an upcoming neuro appointment, and am guessing another MRI would be done among other tests. exam in Spring as that is the earliest I could get in.

Thanks for your help and support!
Paul

[22cyclist]

Paul: Welcome to MS World. What you are describing does not at all sound like primary progressive MS. It may not even be MS at all. Since you have had weakness, I think it would be prudent for you to get in touch with a neurologist who can see you sooner than the spring if possible, or at least get on a cancellation list. When you talk about episodes, they must last at least 24 hours and the symptoms must be continuous.

Sine this site is not about ALS, you might be better served asking about that on an ALS specific site. Your physician is the best reference though.

I know it is hard to wait, but if things get bad, IE: you have trouble swallowing again, go to the ER. Don't wait to be seen. If you have eye symptoms, go see an ophthalmologist.

Best of luck
Lisa

[CarpeDiem2015]

Hi Lisa,

Thanks. I appreciate the help! I did get on the neuro's cancellation list - hopefully will get in soon. In 2003, I saw 3 neuros, and he was the best though seeing someone sooner may be something to pursue.

On the symptoms, those that occurred in 2003 and 2009 have not reoccurred. The swallowing issue was transient (gone in a couple weeks) as was the blurriness. I just wonder if those were early MS signs; though perhaps they are just independent events that are not associated with the symptoms I have today.

The urinary problems and spasticity/gait is what pointed me to MS; though I realize that each could be caused be a variety of things. ALS was the first thing that crossed my mind Really do need to get to the neuro asap.

Thanks Again!
Paul

[JerryD]

I am sorry that you have experienced these problems. I can tell you that you need to see a neurologist, soon. You need to see your primary care doctor and have documentation of your issues. From your description, You could have one of several disorders. Good luck

[CarpeDiem2015]

Hi Jerry,

Thanks. I called the hospital, and now have an appointment with a MS doctor on 12/31; which is a crazy way to ring in the New Year

A positive today was browsing some of the stem cell research that seems to show promise; though may be years down the road.

~Paul