Were They Wrong? PPMS or Something Else?

[k9kai]

So I have been dealing with a hoard of symptoms for the last 6ish months. 3 months ago is where things started getting really annoying with either daily numbness/heaviness, buzzing sensation, etc. Currently I get a crazy amount of symptoms that are all MS but for my progression they seem off or that there is too many. They include the described above (has gotten worse and is now around all day every day in one of those sensations) they also affect both hands and feet equally usually the only variant being the symmetry as it is uncommon for MS to attack more than one side in my case.

Others that come and go within days, double vision with text, bladder incontinence (leaking), spasms, face numbness, jaw tightness (trouble chewing and breathing at one point-don't think it was anxiety there), cold and hot sensitivity, dry mouth, and a tight sensation of something grabbing me. Fatigue is normal but I'm on medication for it. But none have lasted for the duration of 24+ hrs (aka a relapse) so can it be considered RRMS (what I was diagnosed with). I've had it for a yr and it seems like this is way to much for this early. The leg/arm symptoms have stuck around for 5 days now but its different sensations-maybe when that goes away it can be considered a relapse. Nothing else has seemed consistent at all.

I'm thinking I might have PPMS instead of RRMS. Or possibly something else entirely along MS. I have the genetic predisposition, dxd Oct 2015 and have been on Tecfidera since Jan. First MRI showed 4 small head lesions spaced out. That is still the case however one faded, one went away completely, and a new one appeared. Mixed reviews so don't know if the medication is helping. Certainly not symptom wise...but since the lesions are not in the spine, the symptoms are so diverse and don't "relapse" but just stick around and come when they choose - RRMS is not likely the case right? Again the leg/arm thing isn't common in MS and even in PPMS where it is possible you need symmetry and lesions in the right places (usually spine).

What do you guys think? I'm seeing my neuro next week but I don't know if it will be any help. I have trips planned this summer and I'm scared something bad will happen. I don't even want to get out of bed sometimes in fear I won't be able to move my body...how do you cope with this stuff? There has to be medication or something...I'm in PT and stuff but it only helps a bit.

[SNOOPY]

Hi k9kai,

You really should discuss your concerns with your Neurologist. He is the person who is aware of how and why your diagnosis of MS was made.

What you have described does not sound like Primary Progressive --- my opinion.

Relapsing/Remitting MS:

Remissions can be complete (no symptoms) or partial (residual symptoms) with partial being the most common. Symptoms that come and go are very common.

Relapse: A worsening of current symptoms and/or new symptoms lasting continuously for more than 24 hours. Relapses can last day, weeks and sometimes months. A new relapse would be separated from the last by 30 days. These are only guidelines.

Steroids are used for relapses but, not all relapses require steroids. Relapses can resolve on their own without the use of steroids. Steroids will not change the outcome or course of the disease but might resolve a relapse sooner --- but not always. The more steroids are used the less effective they become.

A consideration as to symptoms: Medications do have side effects (prescription and over the counter) and many medications can have side effects that are similar to the symptoms we experience with MS. It is always a good idea to do research into any medication you are taking.

Tecfidera can cause: difficulty swallowing or breathing, weakness on one side of the body or clumsiness of the arms or legs that worsens over time, vision problems/changes, among other things.

Tecfidera as well as the other Disease Modifying Drugs(DMDs)/Disease Modifying Therapies(DMTs) were not developed to help with symptoms, however some do experience symptom improvement.

The DMTs/DMDs are to hopefully decrease relapses, decrease lesion load and slow progression. You can still have relapses, progression and lesions (more/less). There is simply no guarantees.

Symptoms: There are many symptom management medications that are available to help treat specific symptoms. The majority of symptom management medications are used "off label" as there are very few symptom management medications that are specifically for MS.

None of the medication, DMT/DMD or symptom management medications will be a permanent fix or cure. Part of living with MS is learning to live with symptoms and the ups and downs of this disease.

[k9kai]

Thanks mate...I'm trying. It's just really hard cooping since I'm an outdoor person on the brink of needing a chair or assistance in the next 10 years or less...and the worst part is not knowing when it will happen! Mind if I PM you?


**Moderator's note - PM is not an enabled feature**

[pennstater]

I see you were recently diagnosed, October 2015. I am sure you are still dealing with hearing you have MS and the anxiety and fears that come with it. It took me about 1 year when the diagnosis didn't consume me and 2 years to fully feel like myself again.

I do agree with Snoopy that you should discuss with your neuro. I have had intermittent symptoms, that vary with fatigue (both physical and mental), heat, stress. I also know in the beginning, I was super focused on anything new I felt and my mind would race ahead thinking I was progressing. I wasn't.

With your meds, you have been on Tec 5 months. It may need more time to be fully effective, I am not sure. I would ask your neuro when is a good timeframe to evaluate if Tec is effective for you and whether you are experiencing potential side effects.

Your comment that you may need a chair or assistance in 10 years or less makes me think you are still dealing with the uncertainty of MS and the fear that comes with it. But when I read your post, nothing in it sounds like PPMS. Usually, when sensory symptoms present, it is a more favorable disease course, as opposed to weakness/paralysis/balance issues. And if you start early on DMDs, it hopefully delays progression. Also, if no spinal lesions showing, another thing in your favor.

It is alot to deal with and sometimes, difficult to separate MS symptoms from medication side effects. Have you had recent bloodwork to make sure none of your numbers are abnormal?

I hope you get some answers.

[Thinkimjob]

It

It's okay (well it's not really), like pennstater said, the first weeks/ months/ years after diagnosis are a nightmare.

Everything feels like the beginning of the end. Every twitch, every twinge, burning legs etc. It is MS, but it's still most likely RRMS.

You get used to it.