Last reply 9 months ago
Tysabri

Had infusion number five, procedure went ok, but I had issues halfway home driving, It became quite dangerous couldn’t get my right leg/foot to work! (Monday)
Since then the week has been crap!, headaches,dizziness and my walking has been all over the place ( wobbling ) I was really struggling to drag my dead weight legs along?
I am not sure wether it is a reaction to the drug or having a flare up of MS ?
I have been having ongoing bowel issues, ten days to pass this time? Now somewhat sore there? Maybe something else is going on with me?

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stumbler
1 year ago

@kea21 , it seems that your MS is playing up a bit. I can’t believe that you would get these kind of problems after the 5th infusion. Things should be settled now in that respect.

So, what is causing your MS to become “unhappy”? Given your bowel issues, there could well be something else going on, which is causing a “pseudo exacerbation”, a temporary worsening of symptoms as your immune system has become activated by some form of infection.

I’d be tempted to get your Doctor to run some routine tests and see if there is something non-MS going on.


kea21
1 year ago

Hi Stumbler, Thanks for your comment etc, it has been eleven days my walking is still all over the place,stumbling fool! Still mild headaches and dizziness, but is starting to get better.
They are saying it is a exacerbation and the Doctor is going to give me a short course of oral
Steroids tomorrow hopping it may help th walking recovery?
My next Neurologist visit has been brought forward as has my annual MRI.
Maybe they should have had me on monthly infusions instead of six weekly? Or again this isn’t the drug for me?


stumbler
1 year ago

@kea21 , Doctors that prescribe Steroids for MS are usually unaware of the huge quantities needed to address a relapse. I’m talking 500mg or even 1gm a day for five days!

Anything less will probably not help………


skoobz
1 year ago

Weird that it happens on the way home from an infusion .

Never had an symptoms from tysabri … lovely drug it was … untill jcv pooped the party .

Like stumbler said , steriod pills for MS … and for an impairing issue is not adviced … 1gm for 3 days or 5 days as needed .


kea21
1 year ago

Hi, As expected the GP was almost useless!
Only gave me 20mg steroids and a huge box. Of paracetamol?
He admitted he really doesn’t have any immediate experience with MS.
My MS Nurse has said if things don’t improve to get myself to the ed department of our local hospital and wait until I am assessed properly then they will call the neurological department for directions? She has said as she previously suspected the Tysabri wasn’t really working for me either? And she wonders if I haven’t slipped into stage two? This is the issue with living in a rural area and small country.


kea21
1 year ago

Update, Into ED at local Hospital, assessed and documented, then Oncall Neuro spoken to,Yah stronger
steroids and now three days later I am walkine albeit wobbly, the headaches and burning feet sensation
has stopped. An emergency MRI has been set and my annual Neurologist clinic brought forward.
But now my Neuro is worried about my Bowel issues and weight loss? So I now have to see a Gastro
specialist to! ???


stumbler
1 year ago

@kea21 , I’m glad you’ve been given the correct dose of steroids to relieve your MS symptoms.

Good luck with the Gastro.


kea21
11 months ago

My ongoing saga!
Have had a follow-up MRI and assessment, I have a new Brain lesion evidently in a new area?
My walking is still wobbly and my right leg is a lot weaker and I have trouble lifting it more than a few inches, So definitely more progression.
The neurologist still thinks something else maybe going on? Wants a CT scan of my chest and pelvic area and a gastrointestinal check, he is a little concerned about my bowel movement ( 5-14 days! ) And weight loss I am 60 kilos!
I have lost muscle and condition not being able to do the exercise I used to.
He is also getting me to try a mobility drug to help with walking?


stumbler
11 months ago

@kea21, good luck with all that. Keep us posted. 😉


kea21
11 months ago

According to the MRI I have one new lesion in the frontal lobe area and one inflamed older lesion, my spine has no new ones thankfully.
I am now back to almost where I was a month ago, my walking has strengthened,still the balance issue and light headaches/dizziness at times, But I am pretty good again.
I am considering getting another car an automatic transmission as they can be converted to hand drive if it becomes necessary? My driving has become a little bit of an issue now and again, moving from the excellerater to break!


stumbler
11 months ago

@kea21, driving is an integral part of our independence. Don’t become a danger on the roads by waiting too long to switch to an automatic/hand controls.

I’m glad you’re feeling a bit better.


kea21
11 months ago

Hello, Well I am getting another car, a Fiesta automatic that I have been advised is ok for hand controls. Not to big a vehicle and at least I will still feel like I have a driver’s car!
I am still doing really good and can even partially jog a little even though it is stiff legged.
But just when you think life is picking up the powers that be shaft your world again! My much loved Beagle seems to have gone blind within days? It is very sad and I just keep tearing up and fretting,the big tough guy I am.
The local vet wasn’t much help,did take blood and dulled out body problems and just said must be degenerative? A real heartbreaker. Life is a real bitch at times!


strictlysoca
11 months ago

Sending my sympathies for everything coming at once. Hope you can have some support from folks around you. Even though you are feeling a bit more MS better it still takes its toll for quite a while after a relapse as you know. Wishing doggy well


rachaellouise
10 months ago

@kea21 – really sorry about your dog too ! Life is a bitch at times your so right. Love dogs.. I have one . Love her to bits. Always your friends and by your side…
Look after your dog and you will recover soon just takes times

Rachael x


kea21
10 months ago

Decided to try some Aminopyridine on the advice it may help my walking? Not funded here so waisted $60!). It doesn’t seem to be working for me, Typical! I always have to be one that can’t handle things? Spent several days back to being dizzy, nauseous and wobbling all over the place, exactly opposite?
On my Beagle we see an animal ophthalmologist at the end of the month,but probably nothing can be done for her, at least I will know?
She seems happy enough.

Thanks Rachael.


kea21
9 months ago

Latest update, My CT scan ion my lower body/ bowel was clear, so no cancer.
They still don’t really know why I have bowel movement problems(4_10+ days?)
Now it seems I have a B12 deficientcy and
a high methylmalovate? Reading?
I Googled and it seems this exacerbates MS symptoms, walking lower blood s,mood etc,etc
So they may have finally found something? Yet to officially hear what they think? B12 jabs maybe?


vanessams
9 months ago

Are you vegetarian? Usually, b12 deficiencies are higher in that population. I’ve been one for 23 years and was low in b12 when diagnosed. It can cause neurological symptoms, so maybe that has been a factor? I’m not Doctor, of course, but could you have IBS? Have you looked at your diet? I’ve read there’s a higher incidence of msers having gluten sensitivities. I wonder if you might consider an elimination diet as a bit of research to see what, once you start slowly introducing foods, may be making stomach issues worsen? Sorry you are going thru all this. Thanks for the updates in this thread!


potter
9 months ago

Had you been under a lot of stress before your relapse? I had a relapse right before Christmas where half of my body went numb. I couldn’t feel my bladder or bowel either. I got over my relapse but wondered what caused it. I hadn’t had one for 10 years. I decided that I was doing and stressing too much. I had sister die the first of October and my sister from California came and stayed with me. As soon as she left I had to rush my mother in-law to the hospital, severe blood clots. After she got out of the hospital she lost the sight in one of her eyes. She is 95 so I am taking her to doctors appointments, shopping and cooking for her. Fortunately other family members and friends stepped in to help her when I couldn’t. I still do shopping and some cooking for her but not the doctors appointments. It was to stressful for me to help her walk when I don’t walk that well myself. Potter

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