DON'T KNOW WHAT IS CONSIDERED A RELAPSE

[lindaz9]

HI EVERYONE! I AM KIND OF NEW TO THIS. WHAT IS CONSIDERED A RELAPSE AND HOW OFTEN DO THEY OCCUR? I HAVE CERTAIN SYMPTOMS THAT I FEEL ARE WITH ME MOST OF THE TIME. I WOULD REALLY APPRECIATE ANY FEEDBACK.

[WAshingtongirl]

lindaz9 , here is an excellent resource from the MSAA:

mymsaa.org/publications/ms-...

We're not doctors here, but we can share what our doctors have told us, and we can share our own experiences.

My doctor says that a new symptom lasting over 24 hours may signal a relapse. I've had old symptoms flare up or stick with me over the years. Sometimes heat, UTIs, pushing myself beyond my fatigue limits and excessive stress can cause an uptick in those. Sometimes even a pseudo-exacerbation.

If in doubt, call your doctor. 💕

[greaterexp]

lindaz9 ,

Even reading the guidelines in official MS websites leaves me feeling confused sometimes.! As I look over my log of symptoms, I could probably point to periods of times that might be considered relapse activity, but I just relay my log to the neurologist with my visits every 6 months. It's such a roller coaster with symptoms, isn't it? I suspect, however, that most of what has seemed like a relapse probably isn't.

You might ask your neurologist as to what symptoms or changes in symptoms he/she wants you to report.

I hope you (and I!) find clarity in this as we go along.

[lindaz9 in reply to greaterexp]

THANKS SO MUCH. I MIGHT START KEEPING A LOG. IT SEEMS LIKE IT'S THE ONLY WAY I'LL KNOW. IT'S SO FRUSTRATING!

[CalfeeChick CommunityAmbassador in reply to lindaz9]

A log or diary of symptoms is a great idea. Very helpful for your doctor appointments. when I thought I was having a relapse last January, MS doc said a Relapse usually includes a new symptom. He said what I had was pseudo-exasperation of existing symptoms.

[Hidden]

My nuerological calls everything a psuedo . I hate that word. It doesn't seem to make a difference wether the symptoms are lasting weeks to months. That's one thing I have never liked about her but I guess over all it doesn't make a difference since there's no cure and I'm allergic to the infusion. I can take the Prednisone pills just a few at relapse if I have them on hand but she doesn't like to prescribe that either. It's really quite stupid I've told them over and over that I end up taking my dogs 10-20 mg Prednisone just a pill a day for a couple days only if I have something going on like a once a year visit with kids or grand kids but vets and prescriptions there aren't cheap and my dog needs the Prednisone he gets. It's so dumb. I use to see my nueros assistant every other 6 months and she twice prescribed 7 tabs of 5 mg Prednisone for me to have on hand. But she's not at that office anymore. Steroids ultimately cause osteonecrosis so you really don't want to take them if your not a hundred percent sure. frustrating. Then again took 5-7 years for her to call my brain flares actual white matter disease because the lesions didn't have a bean shape yet. I understand if I'm sick and have a small flare fine call it psuedo but when entire parts of the body go completely numb for months or useless for weeks or im falling all over or seriously getting shocked to death then down for months fighting to get strength and movement back for months I don't think there's anything psuedo about it. But really doesn't make a difference unless like me you get screwed out of ssda because your Dr doesn't call things like they really are. To me when your filling for ssda and your Dr notes say cis, stable MRI, psuedo this it makes a difference when really you have massive attacks, frequently and 5 brain Lesions not being acknowledged along with the spinal cord lesion. It's very frustrating.

[Jesmcd2 CommunityAmbassador in reply to Hidden]

Hidden I am speechless. 😨 You seriously need a new Neuro! That's not ok to be treated like that.

Please call MSAA tomorrow and let them help you! No one deserves to be treated like that.

800 532-7667 ext. 154

J 🌠

[Sukie427 in reply to Hidden]

OMG, Tanyagoeres, Jes is right. Where did you find this doctor???? Obviously she doesn't seem to know how to treat a MS (or maybe any) patient, and her bedside manner totally sucks. I think if it were me, I'd consider filing a complaint with the medical licensing board in your state. And find someone who at least knows what they're doing and will at least treat you like a human being!

[Hidden in reply to Sukie427]

I go to the UW MS clinic their supposed to be good. I don't feel like filing a complaint or anything, I just thought it was more of a personality disorder that she doesn't acknowledged my bizarre symptoms. I mean like I was talking about some of the stuff I go through with other UW rehab wheelchair fitting person and the lady said to me oh that's very common for Ms patients. I remember telling her wow thanks for saying that because my MS doc doesn't ever give me that simple acknowledgement. Like years I was trying to describe my vision issues and with no acknowledgement I didn't know if I'm describing things in the right words. Years later I find a post on Pinterest with example images and what do you know there's a name for it oscillopsia. It would just be nice for a doctor to give you a name for something or say they understand or know what your talking about. Otherwise I'm just telling myself I must not be describe in my symptoms right or maybe I'm the only one who has these symptoms . My nuero just doesn't give any facial expression or body language that says it's ok your not crazy, that's common or whatever

[lindaz9 in reply to Hidden]

THANKS FOR RESPONDING. I KNOW JUST HOW YOU FEEL. SOMETIMES I FEEL LIKE I CAN'T DESCRIBE SOMETHING RIGHT. IT'S VERY FRUSTRATING.

[greaterexp in reply to lindaz9]

I've often thought that we should come up with a completely new set of terms for those us with MS. We don't fit many of the profiles of MS, and have few words that accurately describe our symptoms. I vote for "numb-ingly " as a new adjective. I can't say my arm or hand feels completely and truly numb, but there is the sensation of some numbness with some tingling. We could fill a book, couldn't we?

[lindaz9 in reply to Hidden]

I AGREE; THIS ILLNESS IS VERY FRUSTRATING! I'M MUCH TOO YOU TO FEEL THIS OLD! GOOD LUCK TO YOU AND THANK YOU AND THANKS FOR YOU RESPONSE.

[Iona60]

lindaz9 I would say that if you had symptoms when you were diagnosed that went away, and then came back again for longer than 24 hours, you may be in a relapse. Or if you have any new symptoms that last more than 24 hours, this may be a sign of a relapse. I've had MS for a while, so I usually wait a few days before I call my neuro. After about a week or so, if my symptoms continue to worsen, he usually puts me on IV steroids. If they seem to be getting better, he lets me ride it out. Every neuro seems to have a slightly different way of handling things. Until you get a handle on what seems to be normal for you, it's better to be safe than sorry and call you neuro.

[lindaz9 in reply to Iona60]

THANKS FOR YOUR ADVICE. I HAVE TO START KEEPING A LOG CAUSE I DON'T KNOW WHAT'S NORMAL AND WHAT'S NORMAL.

[Sukie427]

I am not a medical doctor, but my neuro has told me that a relapse is any new and/or exacerbation of an old (regular) symptom that lasts more than 24 hours. He has me treat these with relapse medication. I do have flares, which is increase in old symptoms, such as tremors, numbness, or all-over vague pain, but I don't feel like I am going down fast as I do with a true relapse, and although these flares can last past 24 hours they generally don't, and I treat them with medical cannabis and rest. Best thing to do? CHECK WITH YOUR TREATING PROVIDER!

[lindaz9 in reply to Sukie427]

THANKS FOR YOUR RESPONSE. I'LL CHECH WITH HIM.

[Hidden]

Any extream change that lasts more than 24-48 hours and even those get scary my m.s. specialist explained it good rule of thumb