What provokes your exacerbations?

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What provokes your exacerbations?

Postby MrT » Wed Apr 27, 2005 1:04 pm

My symptoms over the years have been relatively mild and infrequent so that I have never been able to identify factors which bring on new symptoms. I'm pretty sure that my current symptoms were initiated by some serious emotional stress from dealing with some problems at home.
I was just curious if anyone has been able to definitley identify events that trigger their own relapses. What are they? Febrile illness, immunizations, becoming over-heated, over-stressed, certain foods?
Was just thinking that it might be much easier to avoid recurrences if we could identify some things in common that seem to be triggers.
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Postby OneEyeBlind » Thu Apr 28, 2005 7:43 am

Hey MrT,

I was diagnosed 1 year ago I can say that so far my symptoms have also been mild, however I do know that illness does seem to trigger a relapse for me. This I know because I have had 2 mild relapses following colds and viruses this winter. Also I notice an increase in the symptoms when I am hot or overheated. Even old stuff that have abated over time.

Stress is a BIG thing too. Wall have it. And sometimes you can't avoid it.

Hope this helps...
Karen (OneEyeBlind) :wink:

* I don't suffer from insanity, I enjoy it!
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Postby Xenova » Thu Apr 28, 2005 9:06 am

I was coming here to post a message about allergies but decided to add on to this one. In another forum, a couple of people indicated that their symptoms got worse during certain times of the year. Most notably it was the spring and fall which coincides with allergies. I have experienced the same. My biggest attack started in October '02 and settled down until the Spring when the symptoms got worse. It settled back down until October. This has been the cycle for the past 3 years. Symptoms get worse around October and around February or March. I don't know if this is related to allergies. I've tried several scripts and OTC allergy pills to no avail. Anybody else noticed the same or similar phenomena?

The trick in analyzing what you propose is identifying what triggers an excacerbation and what causes existing symptoms (from an existing excacerbation) to get worse. My symptoms have gotten worse during these periods but its never been new symptoms which would signify a new excacerbation.
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Postby stsolakos » Sun May 08, 2005 1:19 am

Hi.

I am male, 25 yo, having MS since my 17. My symptoms are still relatively mild but I think I am turning to SP.

My first relapse was when I was 17. VERY VERY VERY stressful times then, I was giving examinations for entering university. I remember myself being unable to ascend the stairs. A friend of mine would pull me.

Relapse: At 19, I was, once again, verry stressed because of some occupation problems. Once again, I was REALLY stressed. Optic neuritis, my right eye was very blurred.

Relapse: At 21, early 2001, when I got the diagnosis, too. I don't remember worst days in my life. I was COMPLETELY depressed then for some personal reasons. I was also hanving major dental work at that time which made me even worse. (Ok, I am afraid of the dentist, I am still afraid :oops: ) Paralysis of one leg and loss of sensation of the 3/4 of my body. Difficulty urinating and weakness. Thanks God, after 5 doses of IV-steroids I felt "near" normal again.

Relapse: Two months after the previous one, having continued dental work, I got an optic neuritis. My left eye's vision was blurred.

The following 2 years were relatively quite but last year a loved of mine was diagnosed with Hodgkin's disease, a secondary type of cancer, thanks God, a curable one. She had to live with my family because she lived 200 km away from the hospital. That was the last hit. Once again I got so depressed (thank you $erono, you helped me become even more depressed). Hopefully no relapse (Maybe Rebif but...). I was also having extensive dental work at that time. Since then I feel getting worse. Perhaps it is Rebif. I have developed antibodies and I have fever all the time. This week I stop it and start LDN.

So, the conclusion :

Dental work -> Relapse
Stress -> Relapse
Dental work + stress -> Major relapse

Could these two be linked together somehow?

Stavros
If God created MS, Devil would create Rebif to treat it!
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Postby bromley » Sun May 08, 2005 3:39 am

Stavros,

Your story is very sad and certainly touched my soul. I hope you are not 'progressing' to SP. Two trial treatments might be worth pursuing - Campath and Tovaxin. Hassle the relevant companies / clinics and you never know.

Best of luck

Bromley
Last edited by bromley on Sun May 08, 2005 7:01 am, edited 2 times in total.
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Postby MrT » Sun May 08, 2005 6:05 am

I wish I had kept a journal over the years recording the dates of my many but mild exacerbations and what was going on in my life at the time so I could see if they fit any kind of pattern. For the past several weeks I have been in the throws of another exacerbation, probably the worst to date involving a semi-asleep type numbness and weakness of all four extremities.Still able to work and function normally but with much greater fatigue requiring a lot more rest and sleep. Over the last few days I am beginning to return to normal and my mood is lifting significantly. This event fell at a time of undue stress but it also strikes me that it fits Xenova's observation of springtime, high pollen and allery activity perhaps being involved.
Stsolakos, I wonder if the dental work is a factor because of the stress or could it be that it releases some kind of bacteria that starts the whole process? It sounds like you really don't like Rebif ! Let us know how the LDN works for you.
Bromley, I don't know much about Campath, but did read with great interest the journal of the young man who reported such great success with Tovaxin. His story was absolutely amazing. I hope that trial continues to show positive results so that that treatment can be fast-tracked .
I also recently read a brief report of an interesting new treatment effort aimed at people who have failed monotherapy and who have impending severe effects from the disease. The people in this trial were given an initial dose of Novantrone and afterwards started treatment with Copaxone. They were given monthly Novantrone for 5-7 months along with the Copaxone. After they finished the monthly Novantrone they were continued on Copaxone alone and over a period of 3-5 years no new plaques or lesions were found and their level of disability improved.
The theory is that there is some kind of synergistic effect between the Novantrone and Copaxone, that the Novantrone regulates the immune system and allows the Copaxone to take control over the disease.
Of course Novantrone comes with the risk of heart failure that can occur long after administration. I wonder if Rituxan used in a similar manner could show similar results.
Tracy
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Postby bromley » Sun May 08, 2005 7:00 am

Tracy,

There is a thread on Campath in the forum - see Lab Rat's account of his improvements. Campath is currently on trial for those with RR MS and most are showing improvements in their disability levels. Raven has recently undergone his first treatment and met two people who were having their third infusion and had shown dramatic improvements in their disability / deficits.

Both Tovaxin and Campath appear to be good at stopping / dramatically reducing relapses and give the body a chance to repair - which of course will depend on the repair mechanisms of each person. They are of course both in the trial stage and their effectiveness long term will not be known for some time (ie whether they stop disease progression). However, they certainly appear to offer more hope than the current CRAB treatments which only reduce relapses by a third.

It could be a good few years before these treatments are available (if they prove effective) but, at least, they offer some hope for the future.

Thanks for the info on Novantrone and Copaxone. At last the researchers / scientists / drugs companies are starting to get the message that what ms sufferers want from treament (those with RR MS) are no more relapses, no more disability, no progression of the disease (and maybe a chance to recover what has already been lost). Unfortunately, the CRAB drugs have served the drugs companies well - lots of profit, yet have been pretty ineffective in terms of ms sufferers (did the four companies do a deal so that their treatments would all (only) deliver 30% effectiveness?).

Bromley
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exacerbations

Postby Cathy » Tue May 10, 2005 7:28 am

cold and flu=exacerbations
over heated=exacerbations

I just recently joined a gym, and I find that SOMETIMES I start to have weakness in left leg when on the treadmill-have to stop and use the bike just because I won't fall on the bike-goes away later when I cool down-does not happpen every time.

When I was first DX the first 2 years every single month like clokwork I had pre-mentral exacerbation which required treatment with solumedrol. Every single month when I ovulated this happened. I finally got on low dose estrace which did help somewhat, thene changed to estriol 8 mg, and I have been pretty good since then. Started LDN at the same time though.

My life is stressfull-I am a single mother with no help from the Father, I work full time with lawyers who can be difficult, and I take care of my mother on the weekend-cooking and cleaning-stress does not seem to make thing s worse for me.
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Postby carolew » Tue May 10, 2005 6:49 pm

I totally agree that stress caused or was very significant in starting the attacks that I have had. Even good stresses like getting a new house, did it for me. As mentionned above, now that I look back, my attacks or episodes of worsening, were often in the spring or fall.

I seem to get small exacerbations mixed with bigger ones every 10 years. And they were definitily linked to major events in my life.

What is really punishing is too much heat wether from the sun or just in the car or in a certain room. It takes me hours to walk like before.

Colds are not consistently linked to exacerbations for me but they sure slow me down.

When I get a small exacerbation, I try to be more regular with my daily exercises. But I get fed up of always re-learning how to walk properly and keep my balance. I feel like a baby learning to walk over and over again.

Does anybody else have tricks to get out of the slump faster. I know some take alot of supplements but do you modify your dosages when you feel you are getting a bit worse?
Any advice would be helpful. Thanks. Carole
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Postby MOMTO3 » Wed May 11, 2005 4:14 am

stress, heat and sickness that definately does it to me. but i get little flare ups when i am overheated which i find i get very easy. just cleaning gets me overheated and i feel nausous and weak and off balance. my husband is constantly saying how cold he is cause i have all the windows open from getting overheated even in the winter!!
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Postby RevLeonidas » Thu May 12, 2005 2:15 pm

In the responses on this thread, I suspect that I’m not alone in seeing a commonality in the factors that contribute (cause?) an exacerbation. In summary, the response to MrT’s query is that the common factors that supposedly portend a flare-up are things that put stress on the immune system: seasonal allergies, emotional-stress, illness, depression, etc.

So, if I want to avoid an exacerbation, I just have to avoid all the things that put stress on my immune system; unfortunately, these are things that are mostly unavoidable. 8O

Since I can’t avoid all the things that put stress on my immune system, I can make a choice to engage in behaviors and activities that mitigate these stresses: eat healthful foods, exercise, meditate, get extra rest, and so forth. Works for me and it's healthy.

Be Well,
Rev. Leonidas
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Postby Melody » Thu Aug 04, 2005 10:33 am

Hubby has had two attacks and one was when Grappling (Feb 9 1998)and the other climbing(Aug 17 2004) both times he overheated. I find it hard to refer to either as a relapse as prior to the attacks there was zilch wrong with him. He has pretty much recovered from the second( numbness down the left side and chest pains as well as burning)but had no recovery on the optic neuritis which left him blind in one eye and the other eye has since shown signs but we never even noted that happening. We were told when he had his last test done in June. We will hopefully know more when he has his next testing in October. :D
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Postby lady_express_44 » Thu Aug 04, 2005 11:01 am

I have had MS for about 15 yrs. My triggers are stress, over-heating, and any kind of fever from infection (especially bladder).

Cherie
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Change of season

Postby noddlebean » Thu Sep 01, 2005 6:18 pm

Well I seem to be like clock work....same time every year now. Summer to Autumn and Spring to Summer. AArrggg. I get a little depressed at the start of each new year cause I know theres something going to happen and its like waiting for the enevitable. I wouldn't say I am any particularly stressed at those times or anything and not over heated. It use to be during April/May but I did make it to June this year before I had the relapse - I put that down to the Lipitor. Anyway still getting over that relapse now and its August. Generally I spend 6 months of mid year relapsing and getting over it and the rest of it great. At least I get Xmas off. :lol:
I know when I have over done things. I am my own worst enemy.

Jill
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Postby jaycee » Thu Sep 01, 2005 8:19 pm

I get them at those times, too. I'm really tense right now because Fall usually is worst.
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