Buzzing making me mental

[HereIam]

Hey all. I guess I'm venting, and if anyone has advice, then bring it on.

SPMS and in January started a downhill portion, beginning with numb fingertips and moving onto buzzing in legs and arms, and further on to L'Hermittes that is very easily activated. Seems like anything I do gets my arms and legs buzzing and it is exhausting and annoying. Walking is becoming difficult. Everything is becoming difficult.

Just finished 5 days of high dose oral steroids (unable to infuse due to vein issues and stupid nurses). On my no taper days now so I know things will not be very pretty for a few days, but as of right now have realized no benefit from the steroids. When I dose with Neurontin then I'm simply bombed for the day. Not a good alternative.

Am discouraged, so uncomfortable, everything is difficult. Change bed, vacuum, get myself dressed, all so tough. What's for dinner? Who cares.

[Seasha]

Hello HereIam,

I am SP also and you have described to a "T" what I went through about 3 years ago. Things progressed all at once, so it seemed, and it started with L'Hermittes. I'm sorry you are having a tough time with the steroids and the weird symptoms. Are you taking any DMD?

In the past, whenever I was experiencing new or recurring sx, I had accupuncture treatments. I really don't understand how or why it helped, but it did!! I still continue to have treatments whenever I am feeling "off" even though I no longer have huge flares. I am a firm believer in accupuncture. You might want to consider?

I understand about steroids. I hated them and will never do it again.... they never really helped and made me crazy!!

Take care and feel better

[HereIam]

Seasha,

You really have no idea how much your reply has helped me today, a day among many of despair. This reply illustrates the value of these boards and how we CAN make a difference in another's life with a simple, honest answer. Thank you, you are very dear.

No, I am not on any DMD, I was on Copaxone and then Avonex for 5 years until it was perfectly clear I had SPMS and neither were helping. Are you on a DMD?

And, this will be my last time on Steroids. They have never done anything to help me and have each time removed 15 important days from my life every time. Done.

To know that what I've got going on is familiar to someone else removes that constant nagging question "am I nuts?" Well, if I am, then we both are, and nuts do love company. It seems as if every movement I make brings on this intolerable, strong buzzing and makes everything I do so difficult. It is discouraging. Even spending time in my beloved sewing room is difficult right now. I'm spending this time just getting by, which I guess is what we have to do at times.

I will look into acupuncture, I haven't thought of that and am glad that you suggested it.

I hope that you have a good day today. I am managing and some days that must be good enough.

[Seasha]

HereIam, I'm no longer on any DMD. Did Avonex for 6 yrs, then Copaxone for 5 and now testing the Ampyra waters in hopes it helps my walking. Been on it for a month and the verdict is still out....

As to your "buzzing" - it WILL go away!! If anything in the world that has taught me patience, it is MS! I understand how hard it is tho. Sometimes it has broken my spirits, but eventually always bounce back - at least emotionally For me, that is the key to wellbeing.

Here's hoping there are better days ahead for you!

p.s. I have a sewing room too, but with numb fingers, I'm finding it harder to contruct anything and, by the way, speaking of "nuts" - I'll take mine with chocolate!

[HereIam]

Reporting in after Steroids

Well, that was all an unmitigated disaster. I have gotten absolutely no benefits from the 5 days of high dose oral steroids. And, I've come out of it worse than I went in.

We were trying to knock back the constant annoying buzzing and L'Hermittes and both are still with me. In addition to that, my ability to stand for any period of time has decreased significantly from before the treatments.

The heartburn brought on by the oral prednisone is indescribable. It made me understand how people dial 911 thinking they are having a heart attack when it is heart burn. My stomach today is starting to feel a bit more normal, but it's going to take some more time. Everything I eat makes my stomach hurt like mad. I am taking antacids.

The only good news part of this is that due to the heartburn, I have been unable to eat, so I've not put on any weight with the steroid treatments.

Discouraged but ready to resume normal life, what ever that is anymore!

[SNOOPY]

HereIam,

Buzzing/vibrations are pefectly normal abnormal sensations when having MS.

Buzzing/vibrations are sensory symptoms and steroids rarely do much for this symptom.

I have had vibrations/buzzing since 1985 and have also had L'Hermittes for the same amount of time. Although I know how annoying these symptoms can be it is possible to ignore them...sort of

I have read some patients have used Neurontin for vibrations/buzzing with good results. I have never tried Neurontin and I. personally do not care to treat this perticular symptom, but it might be an option for you.

[HereIam]

Thanks for sharing your experience, Snoopy. Sure wish I knew that steroids didn't help much with this type of sensory symptom. I think the neuro was hoping to calm down an old large lesion on my cervical spine that in January showed slight enhancement. Wrong again doc.

I do treat with Neurontin at bed time, 700 mg, and it does quiet the buzzing enough for me to sleep. During the day, it knocks me out too much to be of any use.

So, I'll go buzzing and zapping along and as I say to people "it's amazing what you can get accustomed to," so it's time to amaze. The more I move, the more I buzz and on and on.