serial flare ups
 

Hi
just wondered if anyone else has experienced similar to this, i have RRMS and was dx in 2004. At that time i had mutiple lesions and was told that i had probably had ms for about a decade or so. I had had several illness that had been put down to MS in hindsight. I have been treated with betaferon since dx. I have had seeral flares but usually they are iolated events with a few symptoms that appear and then recede ( not completely) back to a more normal state - fatigue and vestibulary symptoms ( balance and co ordination etc are the most persistent0 with fatigue being a major issue. In october late last year i had a flare up that involved severe fatigue, vertigo, sensory issues in my left arm and leg, speech prbs - the fatigue was the worst though and i was in hospital as i could not manage at home- iwas given methylpred and did improve for a while but within a month i had another relapse, then even before i got out from hospital i had another - over all i have been hospital for much of the past 3 months, the MRI shows some progression, i have has a furhter 3 rounds of steroids and finally got home from hospital yesterday. Has anyone one else eperienced this kind of series of flares in rapid sucession? it has been so debilitating, i have lost my job etc and can barely finction well enough to manage at thome ( i should add i i m wheelchair dependdant from other causes too) they have scanned to check for other causes of the flares including doinge tests for viruses etc- i am scared this may be the the start of more progressive disease- any thoughts

Hello, Kebsa.

Have you ever had a sleep study to rule out a sleep disorder for your fatigue? If not please discuss it with your doctor. Also there are meds that can help some patients with fatigue.
http://www.nationalmssociety.org/sit...tlight_fatigue

Here is some information about vertigo -
http://www.nationalmssociety.org/sit...book_dizziness

Information on Ataxia - speech problems, balance, coordination -
http://www.mayoclinic.com/health/ataxia/DS00910

Sensory symptoms are difficult and sometimes impossible to treat.

Unfortunately, steroids might only be a temporary solution to a life long symptom. Another option might be physical therapy or Occupational therapy.

You can also change to a different Disease Modifying Drug (DMD). Your options - Avonex, Rebif, Betaseron, Copaxone and Tysabri. Some MS patients find they do better on one drug over another.

Hey, Keb, good to see you again. Boy, it sounds like you've hit a major aggressive patch in your course. It is so hard to deal with so often. I have never had the rapid fire that you're experiencing, but I did have about a 2-yr. period when it seemed like a sneeze or burp was enough trauma to send me into a relapse. Ironically, I was also on Beta at that time.

What does your neuro think about this repeated relapsing?

Hi Keb

Nice to hear from you again too, and I am sorry you've had such a bad time. I can relate to your situation somewhat with the number of flares, not quite so close together, but I have had a lot of them since I was dx'd in 2001. Here a quick recap of my hx --

First flare Dec 2000, battery of tests for a month.
Second flare March 2001, dx'd
Third flare April, 3 days of IV Solumedrol
Started Betaseron June 2001
Flares every 3-4 months
I added Methotrexate to the Betaseron in 2003, did that for a year, no help
May - Sept 2003 and 2004, I did pulse steroids to slow down the flares, no help.
January of 2004, I did a 5-day IVSM, ended up in the hospital with a reaction to the IVSM - won't do that again!

Stopped Beta in Dec 2004 to start Tysabri. I had 2 infusion before it was pulled from the market.
April of 2005 I started Copaxone. Had a severe reaction to it after a month so stopped that.

Waited for Ty to be returned to the market so my treatment of choice was monthly pulse steroids. Flares continued every 3-4 months.

Ty was reintroduced, insurance company denial.

Entered clinical trial for Tovaxin. I seem to be doing pretty good. Last year, I had 2 flares.

So, technically, I failed Betaseron. I felt horrible on it, and it did nothing to stop the progression of MS for me. If I had not been accepted into this clinical trial, my next stop would have been Cytoxan. I am not a candidate for IViG as I have too many allergies.

I know this is long, but I wanted to give you a full history so you can see that you are not the only one in the same situation. I also suffer from severe fatigue, sensory problems (numbness, tingling, hypersensitivity, pain), some cog fog when I am having a severe flare, mobility problems during a flare, bladder retention. But fatigue and pain are my issues.

I have also considered LDN (low dose naltrexone) but will see how this clinical trial plays out, I have another 1.5 years to go.

Maybe Beta isn't the best choice for you. I hope you get better soon. I think Snoopy gave you some good sites to look at. I don't know what other meds you take for symptom management but you might look into some alternatives. Keep us posted.

Hi Kebsa!

Sorry to hear things are so bad lately!

You've gotten a lot of good advice here. I just want to add my story to the mix.

I was diagnosed in Sept. 2004 after a bout of ON. My neuro at the time talked to me about Tysabri in Nov of 04. I wanted to do my own homework on it before deciding yes or no, since this was all new to me. I read everything I could, spoke with everyone I could find who was on it, (including Av8rgirl, who was just a name on a board at that time!) and made my decision to start Tysabri while in my second relapse since diagnosis. I was scheduled to begin in March of 05 and Tysabri was taken off the market two weeks before my infusion.

My neuro believed that Tysabri would be back and advised that I start on another DMD while waiting. I was in another relapse and decided to do Copaxone until Tysabri came back.

I was relapsing regularly, would come out of one relapse and then BAM...off again. I gave the Copaxone a good run, for 18 months. It didn't work. In the meantime Tysabri was returned to market.

Just before that my neuro moved away. I had to search for another neuro, no one would prescribe Tysabri. I went to three new neuros, all against my choice of medication. Finally a new neuro moved into my old neuro's space just 20 miles away.

I went to make an appointment, and told the nurse to give him a piece of paper, with one word written on it. TYSABRI.

I told her to call me and cancel the appointment if he wasn't willing to prescribe MY CHOICE of treatment.

Before I got back home,I had a message from the doc. He said...come in and we will talk. I went in and explained my reasons for wanting the drug, and he prescribed it.

I go for my 10th infusion on the 31st. My last course of steroids was in May of 07, three weeks before my first infusion. Since that time my MRI is clean, no new lesions, no enhancing lesions, and large lesions seen on starting MRI are reduced in size or gone.

I had a complete vision checkup with all the tests. My opthalmologist asked what drug I was on after the exams. I told him and he said. " I have NEVER seen a complete recovery from the damage you had. Your optic nerve is a healthy pink with no visible damage, the scotoma you had is gone, your eye muscles are under your full control, and you don't even get new glasses! Prescription from 2003 is in effect"

Not only did Tysabri stop the serial relapses COLD, but it obviously gave my body a chance to repair previous damage. I haven't had a single relapse since I started. For me, MS was coming on fast and furious, and now, it's stopped in it's tracks.

I still have fatigue and spasticity, but the fatigue is half or less what it was previous to Tysabri. I went from 300-400 mg day of Provigil to 100-200 mg when I need it The spasticity is under control with Baclofen and Tizanidine, and I often forget to take the Baclofen and don't notice until I remember the next dose.

I am working full time. I am on an exercise and PT program to get back what I lost in muscle and gained in weight post diagnosis. I firmly believe I will go back to my previous career, one I loved and worked for 20 years before being diagnosed with MS, by this spring.

There is hope out there! Tysabri may not work for everyone in the same way, but it works for me!

Hi Kebsa, nice to hear from you again, although I hate the circumstances. So sorry for your recent progression.

I'm with the others on changing DMDs. Beta is not doing the job for you. Tysabri or Navatrone may be possible good choices for you...or...some have gone from beta or avonex to Rebif with some success.

I read the worry in your post...Take a deep breath and try not to stress out.

Let us know what you decide to do and we are always here for you.

(((((((((((((((Kebasa)))))))))))))))

Thanks for the input and advice everyone! I have not been assessed for sleep apnoea as it has never seemed like a possible culprit, it is something i can talk to the mo about next time.
I had an MRI ( HEad only-spine is being done soon) it was the 1st check scan since the original in 2004 when i was diagnosed- at dx i already had what was described as moderate disease with multiple lesions. this scan reported only mild progression considering the original number of lesions but then the neurologis reminded me that only about 1/6 th of the disease activity actualy shows on the scans so they are only a rough guide. He thinks that it is too early to say that the betaferon has stopped working considering the fact i have been on it since early 2005 and have had mainly niggling problems until now. I had a period of illness like this about a year before i was diagnosed, it lasted a bit over 6 months and then stopped- at that stage they had no idea i had MS, they considered chronic infection from an implant i have, lymphoma, viral illness etc and they have retested all that now to see if there is anything that is aggrevating the MS and have found nothing. I even question him about whether it is changing to a more progressive form and he says there is no indication that is the case. He just thinks its a really bad flare up and that i just need to be patient at the moment- he basing this on the previous similar episode pre official dx. I just thought that it was worth checking with you guys to see if any of you had experienced similar kinds of periods. the part the seems odd to me is that there is no clear beginning and end to each of the separate flares, they seem to overlap a bit.
as for DMD's i have been on capaxone but had an anaphylactic reaction after about 5 months or so, thats when i went on betaferon. He has mentioned Ty but feels i don;t meet the criteria at the moment- i must admit that after reading some of the literature i am a bit scared of it at the moment! having said that, if this pattern of flares continues for another coupple of months etc i would probably say it was worth the small risk.
I guess i am frustrated with all this as i had an ideal job for 2 shifts per week that paid penalty rates so i got nearly 4 days wage and could manage comfortably but i am about to lose my job as my health has meant i am not meeting my contract requirements- as i was only on probation after starting there in August they can dismiss me. They are sympathetic but just can;t afford to cover my shifts anymore-life sucks at times! It has been suggested that it may be a good thing, that maybe i need to re assess as i have other disabikitues besides the MS and have been finding things harder to balance/manage anyway.

Hello Kebsa,
I'm sorry to read about your experiences of late. I did have an exasperating period after I was diagnosed. I did fairly well for a few months, and then moved over to NYC from Great Britain to attend a Master's program. During that time, I had at least an exacerbation every 2-3 months. We still don't know if it was from the stress of being in school, being in a new country, etc. But, I continued my DMD at the time, which was also Betaferon, and started taking monthly pulse doses of Methylprednisolone. I changed my diet and started on the Swank diet, and also started in Physical Therapy twice a week.

I can't say what it was that turned things around, but eventually things seemed to quiet down for me. I've been off a DMD now for over a year due to the fact that I was trying to maintain a pregnancy (but infortunately this has not happened). I am now waiting to start on Tysabri as I had been in the Antegren trials several years ago. Are you seeing an MS Specialist, or have you gotten a second opinion from one? Perhaps a Specialist may have some ideas as to where to go from here.

Good luck to you. I do hope you start to feel better soon. Welcome to Neurotalk as well. I look forward to your posts.

All the best,
Chris

Hi Chris, thanks fro the input. I am doing everything that you describe, i have had 3 to 5 days of pulsed methylpred with each flare and have been following the swank diet for the pas 12 months. The Neurologist i am seeing is an MS specialist and is very pro active with treatment but he cannot explain why all of a sudden I am having flares so rapidly- i thought that i was having one long flare with fluctuating symptoms but it is him who thinks they are separate episodes even though i do not fully recover from one before the next starts. I have been home from hospital for 4 days now and while i confess to feeling pretty flat, this is the longest i have stayed home so far (since october 10th) so maybe things are on the upward trend now

Holy cow, Keb, you've been hospitalized that much since October? Did they give you PT when you were in?

I would think it was one attack with new symptoms too. Why does he think it's different attacks?

Question for you - if I remember correctly, you live in Australia? Does the heat tend to bother you? I know it does me and when it's warm here I have a harder time with MS symptoms. Just a thought that maybe you a lot more heat intolerant and maybe you can correlate the flares to the time of year or season changes.

Kebsa, welcome to the team here. No, I haven't had any flare ups like that and hope I don't? Good luck and hope you find a course of treatment that will reverse most of this.

I am not entirely sure why the neurologist thinks they are seperate flares, I think it is because the symptoms would develop and then either remain steady or improve a bit only to then develop new symptoms- I believe it has been more than one flare ( in hindsight) but not as many as has been suggested. I guess it is a bit academic really.
As for PT while i was in hospital, yes i did get Physical therapy when i was up to it and i am now wating to get into an on going out patient rehab program. I was lucky in that the hospital i was in has a specialist neuro rehab program and they recognized the need to make sure that i did not decondition too much but balanced with the fact that if i pushed too much it made my symptoms worse. As you remebered, i live in South Australi and we have been experiencing a major heat wave, we have had multiple days of 105 to 110 degrees just before and after christmas and that has definately made things tougher. I was already in hospital when the heatwave started and the Dr actually kep me in longer at one stage to avoid the heat. He knew that i live alone and that if i went home i would have to go out in the heat a bit to do shopping and get to medical appointments, he knew that would be a disaster so kep me in unitl the temp came down. It is currently warm but not excessive (85 to 90) and i can cope with that quite well.
The only reassuring thing about this recent bout of illness is I did have a similar period like this before, i was in hospital more than i was home for thebetter part of six months but it was before iwas dx with ms and they did not know what was wrong, they queried all kinds of problems eventually saying it was some kind of autoimmune condition, perhaps Lupus. I think it was about 12 months later that i was dx with RRMS and they said in hindsight that the previous illness had been MS and possibly a viral illness. They have done viral titres this time and have found them to be slight raised but do not feel its enoughto be noticable. They have also looked at chronic infections as i have a knee replacement and Synchromed intrathecal medication infusion pump (a metallic implant that has been in place for 6 years), they did gallium scans to check for low grade chronic infections that would not show up via the usual symptoms and they werre fine. The only thing they have found is a raised ANA level but this has been raised for ages, but not enough to confirm Lupus. Last time i was really crook fro the 6 months but then improved again but never quite to the level i was pre illness. Before that time i used my manual wheelchair the majority of the time, in fact there was not many places i could not access in my chair. Afterwards i found i needed my powerchair a lot more and when i do use my manual chair i have trouble with ramps etc. These days i only really use the manual chair at home. Knowing that, i was really keen to access PT while i was in hospital as i did not want to decondition as well as deal with the MS effects

Thinking of you, Kebsa. Feel better soon..:hug::hug:

Bless your heart, you've been through the ringer. I hope you get feeling better soon and can put all this mess behind you.

Take care.

(((HUGS))) You've been through so much. I hope things calm down here soon.

Not as rapid, but I've had a flare about every 3 months for the past two years, with most of the new sypmtoms staying. So I understand the frustration of the MS not giving you a break. Know you are not alone.

I hope you feel better soon. Hang in there!

Keb,
Uve been trough so much,since October? wow. U poor thing .:hug:
Hugss,and I hope u get to feeling better soon.

I liked your term "serial" flares. That is exactly what got me diagnosed and how my 1st year with MS was. My 1st flare lasted 4 months and then every 6 weeks, give or take, I was in a flare. No sooner did I recoop from one did I start another. My were characterized by worsening old symptoms and some new ones.

I too was not able to work anymore, am a single mom of 2 kids, and my health was going crazy. The added stress I am sure did not help.

I am thankful for the Copaxone as it has begun to work for me and with the exception of possibly bing in a flare right now (will know tomorrow), I have not had a flare since July. My body was given a break to heal and it has been such a welcomed break. Of course there are things that are now permanent (fatigue, spasticity, muscle weakness, etc.) but hey, I can deal with that over flares every 6 weeks.

I hope you start feeling better soon and you and your neuro can find the right treatment for you.

Although I don't follow the Swank diet closely, I do use it as a guideline. I felt a difference with in a couple of months of starting it. Then, I fell away from it for a bit and noticed a slight worsening of things. Starting back up - still have trouble giving up butter. That is my one treat.

am

I am glad that things started to settle for you when you started the copaxone, unfortunately i was already on a DMD when all this started, I am on Betaferon (i have also used copaxone in the past). I still know that something is going on, Overall i certainly feel better than i have when i have been admitted, my energy levels are substantially better but i am still having symtoms, some worsening of old symtoms eg vertigo/vestibular problems and some new ones eg today the left side of my face is numb,down my neck/jaw and the inside the left side of my mouth ( i feel like i have been to the dentist)- i know its only a minor symptom but is still tells me that things are still active at the moment. my left arm is still feeling really heavy too and this one may not seem to make sense - i am finding it hard to sit straight. I am wheelchair dependant and i am a bit lop sided as i am an amputee and i have scoliosis and i know i sit crooked when i am tired but at the moment i just can't seem to sit straight, in fact i am getting quite uncomfortable from sitting all askew- i am not sure if this is just part of the fatigue thing or if i have developed some muscle weakness that is affecting my posture, it would only take slight musckle weakness because of the scoliosis etc. Still, i have been home for almost a week, that is the longest since early November! I am struggling a bit but coping at the moment-I see my PCP tommorrow for a check (i am due to have my spinal MRI next week then 2 weeks later i see my neuro)

K - It is really hard and I am glad that it seems to be slowing down a bit. It must feel so good to be home this week. I will pray that you continue to start feeling better and that you can enjoy being at home. Sending lots to cyber hugs your way. :hug:

Officially, a separate attack would normally be defined as having 30 days of "remission" between symptoms. That doesn't mean we wouldn't have any symptoms during that 30 day period, just that nothing really "new" is happening. I think Cheryl might be right that this is all one attack.

I've had MS at least 17 yrs. I have had many back-to-back (with 30+ days remission between) attacks, and these seem to come in sudden spurts during my life. Sometimes it will be years without problems; other times I will just recover and have another 3 - 4 in six or twelve period.

The longest two attacks I had were 18 months, all up. The first 6 weeks the attacks escalated, the next 6 weeks many symptoms recovered, then I continued to recover (with some fluctuating symptoms) over the next 15 months.

It sounds like the the inflammation is not dying down (giving you a break), which leads me to believe that whatever drug you are on is not working well for you. That, or perhaps there is something, like an underlying infection, which is sending your immunities out of whack.

JMHO

Cherie

Sounds like a lot of stuff to deal with!

Kebsa, your posture problems may be related to weakness in the back muscles from the MS. Last month my back muscles were weak-feeling, and if I sat up straight, I'd end up tilting over without noticing it.

Tysabri is recommended for those people who don't do well on Beta or Copaxone... sounds like it might be the drug for you.

And as to why you're having serial flares, it's a puzzler! They say we have more flares in the first three years after diagnosis... but that's just what they say. I have a hard time figuring out whether I'm in a flare or just experiencing more symptoms, myself. Since I have new symptoms every month... well, it's hard to tell.

Everybody is always on about their latest lifestyle choice, and how they feel so much better - but without actual scientific evidence, how do we know that this diet supplement or that foodstuff is helping your symptoms? All we can do is look at our lifestyle and remove the stressors from it, and try to keep our bodies as healthy as possible. That way it can recover quicker from the damage it's doing to itself.