Shingles

[KAS74]

Has anyone else here with MS get the shingles? I noticed a bump on my shoulder by my neck this Tuesday night. My husband thought I got stung. Then a little later that night I noticed another bump on my throat. On Wednesday it got worse. When my husband got home he said to call the ER so I did. The oncall doctor was not nice at all. She said I was to young to have shingles. It was gonna be just another rash. So I told her thanks for the no help. I called my sister and she said she would get me an appointment at the doctors office she works at the next day. When the doctor walked into the room and looked at me he said yes you do have shingles! I was there yesterday and got medicine for it. But it is even worse today!! I can't even move my neck. I now have even more blisters and patches all over my neck, throat, and ear! It hurts so bad!
If anybody here has had it. I am just wanting to get an idea on how long the pain lasted for anyone else.

[KitOP]

I did have an experience with shingles as well. It was after I went through an IVSM treatment with a nasty flare. Guess my system was all over the place. I went into the ER with so much pain - they did all kinds of tests, and could not figure out what it was. I was so sick. So they admitted me. 24 hrs later there they were! My Dr said that it was not the first time that they had been fooled by shingles and won't be the last. I had pain for quite a long time. But that is not to say that you will. They told me that they follow a nerve path, mine were from my breastbone around to my spine. Not a good spot. I was on pain meds routinely for probably 3 weeks, then as needed for months afterwards. May yours not last that long. Sounds like yours are not in a good spot either. Hang in there

[MSer102]

I've never had shingles, but a friend of mine (who doesn't have MS) did and she was only in her 30's.

[katgrant63]

Yes

Yeah, I had shingles about a year ago. My neuro told me it had nothing to do with MS and that he didn't deal "with that sort of thing so go see your pcp". I did see my pcp and she said she couldn't tell for sure, but we'd know if left a permanent scar. That was comforting. Btw, it did leave a permanent scar. Unfortunately, I think there is still so much that even the experts still don't know about MS that it's frustrating to the patients who deal with the symptoms every day and know in our hearts it's somehow related.

[cosake]

I am almost 42 and had shingles last fall on the right side of my face and around my eye. It was painful for about a week, and then just annoying for about another three weeks. I did not get the post-herpetic pain syndrome.

I ended up getting the shingles vaccination in-between switching DMDs to help prevent any future shingles.

[katgrant63]

Shingles

I didn't get the after pain either, but mine took almost three months to completely heal.

[MSer]

Shingles

I have never had the shingles, but the new pain medication I was just put on says it helps with Shingle Pain, it's called Gralise and is from the same company that developed Gabapentin.

[goddessmoon]

shingles

Yes, I had shingles when i was 31, way too young. This was 6 years before my MS diagnosis. Now approaching 56, have aunts and uncles on my dad's side of the family who are in their 80's and have had shingles several times now.

[allHailye2]

......I ended up getting the shingles vaccination in-between switching DMDs to help prevent any future shingles.

i didn't know you could do that!

i got shingles when i was 29. they were going around my right hip bone where my panties sat. they lasted for around a month or so.

ps...i hate those shingle commercials! young people get them too!

[CarolRic]

I too hate the commercials for the shingles vaccine eluding to the fact that only old people get it. When my daughter was 8 months old, she had a strange rash on her head. It looked like small clusters of chicken pox. We didn't have health insurance and since it didn't seem to bother her, I just watched it. When it continued to get worse, I took her to the pediatrician who informed me that she had shingles. He wanted to send us out to CHOP just because shingles in a breast fed baby was unheard of. We decided not to take her out there since they couldn't do anything but take note of her. Since then, she's had shingles twice more, once on her face and once on her torso. She's 16 now and hopefully won't ever get them again! My middle daughter has had them as well. Shingles are not for old people!

[woodstock]

My neuro has been cautious about the shingles vaccine. I do have friends (without MS) who have had shingles in their 40s and were miserable with it. I've debated about getting the vaccine, but have been reluctant with the few MS sx I have to get it and risk it. Thoughts?

[KatieAgain]

My then boyfriend had shingles in his 20s. It can attack at any age.

They need to come up with a Shingles Vaccine that is not live so us MSers can take it. Current vaccine is not allowed and that is a shame because Shingles are not fun.

[cosake]

@ woodstock - I am glad that I had the vaccine. Even if it just prevents the next shingles episode from being as severe it is worth it to me. I never had the post-herpetic pain syndrome, but it was still very uncomfortable.

@ CarolRic - have you considered having your daughters vaccinated ?

@ KatieAgain - I had the shingles vaccine in January, after an episode of shingles around my eye last fall. I have 4 auto-immune issues including MS. I knew going in that I could have some MS side effects, but we decided the risk was worth it for me. You will need to discuss it with your doctor, and see if there are interactions if you are taking a DMD, etc. It is not something that MSers are completely prevented from taking. I waited until I was in-between DMDs to take it.

[KatieAgain]

Thankyou

Cosake

Thanks for that info as it so happens, I am in-between DMDs, I just came off a flair. I will certainly bring this up with my Neuro!

Thanks for the info.

[Fed Up]

As an ER worker, I have seen it many times. I requested the vaccine as soon as, I knew of it, a few years ago. Knowing I had auto-immune and taking tons of pills, I did not want to risk it.

Often, it appears with EXTREME pain. More importantly, it is a 'second' dose of 'chicken pox,' really. Once, you've had the chicken pox, stress or exposure to the pox, can result in shingles. With severe compromised immune systems, being around kids with exposure or active vaccinations, can help one acqire it, as well.

A very good friend of mine, had singles in the heart. Somehow, there was a sore in the nose (from Chicken pox exposure--seemed benign) and it went from the nose to the heart. My friend almost died, age 50.

Sadly, I was helping another friend with Breast Cancer and she was exposed to, my other friend. And the one with Breast Cancer, got Shingles along the lower rib cage and around the trunk. I think it is more common there and in the face, up to the eyes. Along nerve paths.

I thought I read, a few years ago; That anti-virals are now, being given for it, with great success! I think it was Acyclovir, but don't hold me to it. I am almost certain, that is used for it. And I'd think, something, to calm your nerves. Since, stress is always a factor.

Whether you can take it, or not? is more of the question.

David Letterman had it. I later figured out, it was about the time, he found out, he was going to be a dad! LOL that can be stressful, for an aging man with heart bypass!

For decades, absolutely nothing was used for treatment.

Most of all, I know it is mostly, extremely painful and, never, really goes away. It remains with you, just no symptoms. Then for some, it flares and causing problems, from time to time. And a few, hurt forever. I do not know the %, but being one of the ones, that it never returns on, would be, my hope for you!

I DO, worry about that one! It strikes anyone with auto-immune or compromised health and stress. Like while receiving Chemo, for breast cancer. And M.S. medications are fairly similar..imho fed up