when can symptoms indicate exacerbation?

[Michela11]

I am completely confused and don't know where to turn with this.

I can't get past the (dragon) receptionist to speak with my neurologist and am very frustrated with the situation.

I am new to MS and simply don't know when I should be concerned and when not.

Last week I had a period of 3 days - Tues-Thurs where I felt like absolute hell, and my "normal" symptoms of fatigue and constant burning right foot changed. The fatigue increased, the burning foot stopped completely and instead I had patches of "dead" feeling in my right leg intermittently, and constant buzzing in my right foot, up my leg to the groin area and over the pubic bone. I have not had these symptoms before.

It culminated on Friday night with me depressed, crying, feeling alone and confused etc etc. I woke on Saturday feeling fragile but the buzzing and deadness were gone, and the burning was back.

Was this possibly an exacerbation? A pseudo exacerbation? Is there such a thing? Maybe I pulled out of it, maybe this is what I can expect. I can't get any joy from the neurologist's office and am considering seeing if I can find someone else more accessible. Or are they all inaccessible? I am totally at sea with this.

I can't access any subsidized meds  because I have had CIS only.

[needanswers54]

Dear Friend,

I have been trying for months to access you and could not even access my e-mail to get your e-mail address.  I have been trying to contact you.  I have to log off.  You are in my prayers.

Torey

[Michela11]

THANK YOU

THANK YOU

and again.

Heather, you told me about your views on medication earlier rather than a later a few months ago and I - I just didn't know what to think! Now I am seriously considering the wisdom of the path my neurologist is on.

Quix, thank you for the information (and reminder) of the definition of a relapse .... I knew that ... (had read about it) but was afraid to think that might actually be happening.

Your words inspired me completely to email my neurologist with a brief breakdown of the situation, to which I have had no reply - but did not expect one today. I rang the receptionist today and got the usual "we mustn't disturb doctor" and I politely said I was not disturbing him but as a paying client was simply requesting a call back from him. I then faxed the request through. No reply, but I expect there will be one to the email in particular.

Sheesh

Courage to face a disease in its newness

Courage to deal with a doctor's receptionist for crying out loud. Who would've thought??

THANK YOU  

[Quixotic1]

Hi, Welcome so much to our family.  There is so much new to figure out with all this, isn't there.

I think it is pretty clear that you had a full exacerbation or relapse.  Under the definition of relapse, the symptoms must last at least 24 hours, after which they may stabilize, improve or disappear.  Your episode fit this perfectly.  It started, lasted three days, and then resolved.  It was a short relapse, which is good that you didn't have to go through it very long, but it meets the full criteria.

Your neurologist needs to know this happened for two reasons.  First, you are currently diagnosed with a CIS.  He needs the additional information to see if you move into a full diagnosis.  He may want to see you very soon to see if yur exam has changed.  Also, he may want to do a course of steroids.

A psuedoexacerbation is when the symptoms are brought on artificially and resolve within a few hours or so.  The classic is the symptom flair up brought on by being overheated, but resolve with sufficient cooling off.

Yes, I agree you need to be seen.  Every bit of data they can get with the CIS can be helpful.

As far as the dragon at the desk.  When I need to communicate something to the doctor I fax him a brief letter explaining the problem, and include my phone number.  Then each day, I call and request a call back.  Next time you see him, be firm that his receptionist refused to leave a message for call back.  Ask how he wants you to inform him of new symptoms.

In the beginning, the neurologist and the patient are both learning about the course of "your" illness.  He needs more info rather than less.  He can't deal with information he doesn't have.  Eventually you'll have a better idea of what he needs to hear about and what he doesn't.

I hope this helps.

Quix

[SOONERMOM]

I have "gotten in good" with all my doctors nurses, so when I call I tell the receptionist "I am a patient of "Dr. Smith" and I need to leave a message for his nurse"Mary".  This always seems to work for me---(of course that doesn't always help me if my doctor doesn't care about my new symptoms....lol)  But the nurses always make me an appointment.

Also- if you can get their individual extension numbers that can be helpful as well.

Good luck,
Stacey

[Heather3418]

This sounds like a pseudo exacerbation.  BUT...since you still sound like you are having some symptoms, this may indeed by a slight relapse.

'I totally agree, that you should find a neurologist that is more accessible to you.  This is ridiculous that you seem to have to fight to get him to call you.  

I am one lady with MS, that feels that even if you had only one "attack" that this still warrants starting on one of the disease modifying drugs.  I am not a real fan of "Let's take a wait and see approach,"  I have been diagnosed for almost 13 years and I know that medication was delayed because of dumb aspirin Neurologist.  Thank the good Lord, I do not show any signs of black holes or brain atrophy on MRI, after all these years.  I went many years without any treatment, only symptomatic relief.  Nothing to fight the disease itself.

I just started on Copaxone a few weeks ago, after trying Avonex some years back.  I feel really good about taking an active role in trying to fight this disease.  MS has a tendency to worsen slightly or even agressively as we age, so I really feel that you should be on one of DMD's.

Keep track of your symptoms..ALL of them, so when and if you get to speak to the Neuro, you can tell him what has been going on.  And see if you can pinpoint what may have started this slight relapse.  Infection, stress, etc...It's important!!!!!

Feel better sweetheart,
Heather

[gollie]

Hi Michela:
You ask a very good question here! I am also new on the ms front here as well (but not dx's so far). and have been wondering about that myself. I have been reading as much as i can and have found a ton of helpful infor here.
I'm just wondering if  that question may be abit hard to answer after all the reading up i have done, from everything i have read every one has different symptoms and exuberations and remmitance periods.  which might make it hard to compare with some one elses flar ups. altho there do seem to be several more common symptons amongst msers. I think that if i felt as bad as you have been feeling that i would be making an appointment with either my PCP or Nero whom ever could see me first. They migh be able to shed some light on the subject for you.  I hope You will start to feel better soon
Gollie