Terrified of PPMS

[Guru84]

Hello.

My symptoms started in April '13. I felt pins feeling in my left big toe and when I would go with my fingers below root of left big toe I would feel electrical impulse shot throught my big toe. That sensation lasted for 2 months approx. and then went away. Then, in August I started getting the same electrical impulse feeling in left foot pinky when I massage spot below root of that finger. That feeling was starting to subside in November-December, and now it is back and couple of days ago I notices the same electric impulse feeling in my left achilles heel when I go over a spot on my hamstrings near knee. (I don't have these feelings if I don't press these spots).
Other symptoms are muscle twitching for a year on different places not constantly and burning in other places that is rare and also comes and goes, but I know that these 2 can be due to anxiety.

I am terrified of PPMS so I went again to neurologist. She said that it's from anxiety, that I don't even need to do MRI, just if I want to calm myself down, but what petrified me is that she wrote I have ankle clonus bilateral, and hyperreflexes simmetrical.

I googled it up and saw that clonus just can't be caused by anxiety so I am terrified again.

I was trying to rationalize that these electrical impulses (only when I press over a spot) are nothing to worry about, but ankle clonus is said to be usually sign of upper motor neuron diseases.

Thank you for any help!

[JerryD]

Yes, PPMS is scary because there are no FDA approved treatments and there are precious few studies going on. Try to keep your vitamin D levels up to 70 or 80. I wish you good luck on this dangerous journey. Pray that the Cleveland Clinic or the Tisch MS Research Center has some success with their ongoing trials I have PPMS, too.

[Guru84]

I wasn't diagnosed yet, still hoping that it could be anxiety, but nonetheless scared as hell.

[SNOOPY]

I was trying to rationalize that these electrical impulses (only when I press over a spot) are nothing to worry about,

Hello Guru and welcome to MSWorld.

In MS sensations cannot be caused, or stopped by touch or movement. If you can cause a sensation by pressing over a spot it would not be due to MS.

She said that it's from anxiety, that I don't even need to do MRI, just if I want to calm myself down,

Your Dr. may be right. However, if it would give you peace of mind then ask to have a MRI.

but what petrified me is that she wrote I have ankle clonus bilateral, and hyperreflexes simmetrical

Did you ask your Dr about what was written. If not then please ask her for a clarification of what she wrote.

[Guru84]

Haven't been diagnosed yet, hoping in the back of my mind that it is anxiety, but petrified nonetheless.

[MSer102]

Guru84, no matter what condition you might have that's causing your neurological symptoms, the major problem you have is your anxiety. Anxiety makes people do irrational things like arbitrarily pick a disease that they choose to be terrified of. And no matter what symptoms a person has, anxiety magnifies them about 10 times to make it impossible to tell what's really going on.

It isn't a symptom of any kind or stage of MS for electrical sensations to be felt when a nerve in a limb is pressed on. So that doesn't even go along with the disease you've decided to be terrified of. There are diseases that are much scarier than PPMS, so why did you pick PPMS to be afraid of instead of something else?

The person who can answer your neurological questions is your neurologist. If she isn't answering your questions and pursuing a cause for your symptoms, then it makes sense for you to consult a different neurologist for more testing and another opinion.

And it would also be a good idea to just have a general checkup with your primary doctor to look for other possible causes for your symptoms, like your thyroid hormones being out of whack or being low in some mineral or vitamin like B12 or D.

And it's also critical that you talk with your doctor about getting your anxiety under control. Anxiety can make it impossible to have good communication with your doctors because it makes you worry and turn everything into a catastrophe instead of getting the facts and responding to the situation appropriately. It's going to be very hard for you to get a diagnosis and follow a management plan if the only thing you can hear is your anxiety.

So please get back in with your doctors so you can start getting your anxiety under control and your symptoms worked up. Good luck!

[misslux]

Some excellent advice above to get everything checked out including your anxiety.

Good luck!

[Guru84]

Thank you all for your answers!

It isn't a symptom of any kind or stage of MS for electrical sensations to be felt when a nerve in a limb is pressed on.

My thoughts were that this is the symptoms of peripheral neuropathy which is the symptom of PPMS. I do feel now almost always burning like feeling in achilles heel but that can very well be due to anxiety.

And, sorry for whining here...I guess that for you that have this illness reassuring someone that is still only afraid of it is pain in the ***.

[SNOOPY]

My thoughts were that this is the symptoms of peripheral neuropathy which is the symptom of PPMS.

No.

Multiple Sclerosis is a disease of the Central Nervous System (CNS) which includes the Brain, Spinal Cord and Optic nerves.

Abnormal sensations, which is normal for those of us with MS, are common in all types of MS and is not indicative of Primary Progressive Multiple Sclerosis.

And, sorry for whining here...I guess that for you that have this illness reassuring someone that is still only afraid of it is pain in the ***.

No, it not a pain in the behind

[Guru84]

It's there since August that's why I thought PPMS and not the other one. And I connected these electrical sensations to MS that is why I am scared of that.

Would be very happy if what MSer102 says is true, that it is not sign of MS at all.

And I am glad that I am not pain in the ***.

[gomer]

Guru.....

You are NOT ALONE!....

I complained so much something "else" was wrong the VA sent me to their shrinks! (their thinking it was all in my head). Their own shrinks agreed that I was not nuts or even depressed, just "adamant that something else was wrong".

What did the MDs do after that, NOTHING!

Then one day decades later a new non-VA eye doc connected the dots and opened the MS can-o-worms. Next came testing for MS and BINGO! The VA doc said to me, you have long standing RRMS, "not surprised are you? No I was not surprised one bit.

FUNNY thing is I have Dawson's Fingers galore upstairs, so in a twisted sort of way, it WAS IN MY HEAD (mostly) and a spinal lesion for good measure.

Gomer