Length of RRMS exacerbation until it can no longer be just an exacerbation
I've got a question that probably nobody has a concrete answer to... I'm full of those lol. I started this attack on April 2nd (actually the last week of March, but technically April 2nd since that's when the doc recorded it). The attack started with Optic Neuritis and ONI (if this sounds familiar, you've probably read my other posts). Those vanished around mid April and trouble walking began.
The walking has progressively gotten worse. It began with me being able to walk/stand for about 30 minutes before I felt like I was going to collapse. I can now walk/stand for about 5 minutes before I get the same feeling. Pain accompanies me at almost all times as well now. I've hesitated to see a Neurologist since I saw the first one at the onset of the attack because I will soon be engaged in arbitration with him. When I attempted to change Neurologists, I was referred to a Neurologist who was mentored by him. It seems I cannot escape his grip and it is quite frustrating.
Now on to my question, lol. I've read that some people have attacks lasting as long as 6 months, but generally symptoms get better as time goes on; not worse. How long should I allow the symptom to get worse before I go in and see a Neurologist again? The process is just so mentally stressful that I'm afraid it will trigger a pseudo-exacerbation and I can't handle that right now. I am beginning to become concerned that I am heading into SPMS territory and out of RRMS territory.
I just realized that I asked pretty this same question before and Lulu so kindly pointed out that I had answered my own question - I do need to see a Neurologist, because I am worth the trouble. I also read in another post just a few minutes ago that dx of SPMS can take over a year with several visits. I guess I just worry a lot, but don't want to take the necessary course of action. I need to get my butt in to see a Neuro, lol.
H, Kenny. You're right, this one is tough to answer, and often things are clear only in retrospect.
There is no real time limit on flares. Mine tend to be minor compared with many others', but they last a long time. I figured the burning in my legs was permanent this time because I had it almost 2 years straight (have had several bouts of this), but lo and behold it has eased up almost entirely. Same with dizziness/vertigo. Other disturbances have come and gone too. Not to say I'm not having any symptoms, as heat issues, fatigue and right leg weakness are here and now. Fatigue and heat are always with me, but the leg thing started in April, or actually got much worse virtually overnight.
So I never have a time when I feel normal, yet I've adjusted to what my neuro calls a new normal. In my opinion, my disease is still definitely RRMS, but I've learned that this sort of thing for many people is way more complicated than the descriptions make it seem.
What concerns me about you is that your leg continues to get worse. Nothing is leveling off, as it has for me. Regardless of what this means in terms of MS category, I think you need to see a neuro ASAP. There is bound to be someone who can give you an independent evaluation. It's possible that a course of IV steroids will help you. I urge you to get busy and see someone about this truly debilitating turn of events.
Thanks ess. I'm not sure that I should take another course of steroids so soon. I took 1000mg of Solu-Medrol for 6 days at the onset of the attack (2 months ago). I do need to see my Neuro ASAP though, in fact I'm calling right now and I'm going to demand that they give me a Neuro that my old Neuro didn't mentor lol. I truly despise HMOs now, they were fine when I was healthy, but now that I'm sick I need my own doctor outside of the grip of an HMO.
One of the difficult things in judging the "end" of an exasperation is realizing that we are always in an attack or we are in a remission. Those are the two states. Another is the expectation that things will improve. Sometimes they don't. The key is sometimes stabilization of the symptoms. We may still be just as symptomatic, but it is not getting any better. This is likely a remission for some of us with RRMS.
In terms of weakness, we also have to factor in DEconditioning where the muscles weaken from disuse.
It's a hard call. I think this forum attracts all the people in gray areas, where the "rules" just don't fit well. That's why it is helpful to have a smart MS Specialist who has seen many different courses.
How right you are, Quix! I was seeing a great MS Specialist at UCSF until a Neuro appointed by my HMO decided that I don't have MS and couldn't see the specialist any longer. I asked my PCP for a referral back to him now that my diagnosis is officially in the HMO's system, and my PCP said it has to come from a Neuro. I called to switch Neurologists today and was informed that a referral to a 3rd Neurologist may not be approved. I'm likely going to be involved in arbitration with the first one I saw, and the 2nd one was mentored by the first one. I guess I'm SOL :)
Also, what's really interesting is that I have been more active since the attack started than I was before. I have always been a really laid back person without much physical activity in my life. Now I make sure to walk at least 30 minutes per day (spread out due to fear of over-exertion) whenever possible. I also try to remember to stretch my leg muscles 3 times per day. Yet, my weakness and balance symptoms are still getting worse. If my HMO doesn't approve a third Neuro soon, I'm not sure what I will do since I don't have the money to see a Neurologist or the Specialist at UCSF on my own.
This is something I have wanted to write about, but it is 2am here and I'm fading. A large number of people here have been diagnosed, only to "lose" the diagnosis by another Neuro. You are certainly caught in the bureaucracy of your HMO.
When the diagnosis is taken away because there is evidence of the real diagnosis being something else, I am happy that the process of rational deduction that is the diagnostic process is working well.
However, I am VERY mistrustful of the doctor who takes away the diagnosis and has no good ideas to replace it with. This is always based on the adherence to some rule that is usually outright wrong or is misunderstood. If the basic requirements have been fulfilled and a diligent "rule-out" process undertaken, then the diagnosis of MS should stay.
I look at it as a problem of the worst case scenario. What is the worst thing that could happen if the diagnosis is wrong? The patient may receive meds that are expensive and have some side effects.
What is the worst thing that can happen if the diagnosis is wrongly removed? The patient (who actually does have MS) misses the best window for treatment, which is as early as possible in the disease course, loses the best opportunity to lessen the effects of the disease.
Someone needs to bump up the thread called "Lies my Neuro Told Me".
I'll see if I can find it. It is very long, but well worth the time to read.
Ty so much Quix! Finally somebody who agrees with me. I lost 2 years of the early window because of this quack. What he told me when he took the dx away was that I "definitely have M.S." but that "it is non-specific, so the best course of treatment is unknown". I have spoken with one Doctor who agrees that injury was caused to me because I was taken off of meds, but also said that it would be very difficult if not impossible to prove. I'm going to read that thread now...thanks :)
FYI - this may help somebody in my situation. I saw an MS Specialist yesterday out of pocket, and she suggested that I may have something as simple as a Urinary Tract Infection that is causing me to feel many of my symptoms. This is possible with M.S. especially during an exacerbation because we may not feel the normal symptoms of the UTI due to decreased sensation in the eh...er..."Urinary" part of our body :)
I haven't gotten my lab results yet, but hopefully this is all that is going on :) If not, it may be that the Rebif is actually making my symptoms worse. I hadn't heard of this nasty side effect before, but I actually spoke with 3 MS Specialists at UCSF and they all said the same thing.
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