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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Re: Relapse Ending?
Apr 26, 2012
Hey Becky. Welcome to our board of strength!
I think Jayhawk gave you excellent answers to most of your questions, but I wanted to throw my two cents in as well. I too, went from "perfectly fine" to waking up with a numb/ tingling hand to having a severe ON attack all in 2 days. I went to my regular doc who said the numbness was a pinched nerve and he sent me for a CT scan. The CT scan showed abnormalities - but couldnt tell me what and a Neuro was called in to look at it. He had me in a MRI within hours.
I have over 5o lesions on my brain. None in my spinal area. I also had a CSF draw and there was nothing abnormal about it, the only reason its done is to check for brain infections, meningitis, PML, infections- having a positive LP means that something is wrong, but doesnt tell you what is wrong. Most people refuse to do it because as long as you arent exhibiting signs of Meningitis, its not really necessary for MS..

Anyway, I saw a MS specailist the same day I had the MRI and when the results of the blood work and CSF came back, the specialist called me and said "congratulations, you have MS". I thought I was dying. I had less then 48 hours to find out that from being completely healthy to having MS happened.
Wish that was really what happened.
MS can take ten years to show up. Warning signs, symtoms which we ignore and think are silly, are actually the beginning of the disease. Looking back, all those times I tripped over my own two feet, fell down the stairs, got completely dizzy and cognitively sick when I got out of a hot shower, the last time I was in a hottub, I needed help getting out. Not exactly the romantic night my husband had planned....I honestly thought this was just me being clutzy or coming down with something. I didnt realize they were warning signs.

Its alot to digest all at once and there is definately a grieving period...but once you accept this disease, its just a pain, not really anything to be upset over. We will get to that once you actually are assured you have the dx, ok?

Relapses come and relapses go....for me, I feel 100% better when I open my eyes the day the relapse starts to go...more energy, ready to think straight again, better able to cope with stress and everything else. I have a high pressure life. Like you, Im type A. I am finishing my doctorate right now, and I did my undergrad, and MBA and now most of my doctorate since I was diagnosed. I also have a 4.0 GPA. I have 3 kids and a pain in the butt husband- my job is in sales and I travel the country. Nothing I do is easy.....and when I have a relapse, I cannot cope with any of it. The day I start feeling back in control is the day I know its passing.

There is alot to learn about MS but the first thing I want to teach you is STOP reading unless it is here, or the National MS society site. Nothing else. There is WAY too much info out there which is outdated and not monitored. If you look hard enough, youll find cures! There is no cure for MS, they have no idea what causes it. Dont read anything except what the MS society says and ask all the questions you want here. We understand how hard this is to take in and adjust to...but I promiise you, Like Ive promised hundreds before you, that you WILL survive and adjust. And guess what? I havent been wrong yet! Youll get thru this one day at a time....and honestly, a year from now, youll look back and smile and be proud of yourself because nothing is going to change if you hear that you have MS...youve probably had it for years anyway, now you have an excuse for bumping into walls or walking into your significant other when you walk side by side....
Hugs
nikki
Re: Relapse Ending?
Apr 30, 2012
So an update....no the relapse is not ending. My control freak of a brain, lesions and all, is going to take it's sweet time learning to cope with this. After several good days I can report that my symptoms are still very much here and instead of getting better, they like to get worse, then better, then worse... I find it slightly humorous that I even asked the question, but am not being hard on myself don't worry :)

Yeah I know now this is normal, but it is an evil cruel trick. It did not seem to weigh heavily with the first attack that was more isolated. I could just be mad at one problem, not 5! Good news is that the eyes have stayed clearer after the steroids, though they are a little blurry. And the cog fog is coming and going vs being here all the time.

Spinal MRI scheduled for the 7th. If the lesions are no longer lit up, will that lead to a negative or just probable diagnosis? Here is what the brain MRI said (did I share this already? Sorry if it is a repeat). And the LP results are not fully in yet, so far I know my glucose and protein levels were good and my WBC was 27...which the doc said was the steroids and not to be concerned.

MRI: "There are numerous T2/FLAIR hyperintense lesions involving the periventricular and subcortical white matter of the supratentorial brain. There may be additional lesions involving the mid brain and bilateral cerebellar peduncles. Numerous lesions do enhance following contrast administration. No abnormalities of restricted diffusion.

"

"IMPRESSION:
Numerous white matter lesions with associated enhancement. The findings are compatible with multiple sclerosis with active demyelination. Recommend clinical correlation.

"

Onward to the beginning of a new week. Of waiting.
BECKY! Awesome news actually.....Each relapse you have, if you even have another one, will be different from the last, so there is no way of knowing just because this one was 'so bad' that the next one will be as well....and as for healing- that remains to be seen. I have no use of my left hand and fingers due to severe nerve damage. I can pick things up with my hand , but I dont feel them. I burn myself weekly and laugh about it- and I type with voice recognition most of the time (youll know when Im not!) but overall, my onset relapse healed for the most part. I had over 50 lesions on my brain when I was first dx....how I didnt know something was wrong when the first ten attacks happened is still beyond me (and my doctor!).

The fact that this doctor is SO open minded about LDN and about you seeing a MS specialist is a terrific sign. Heck, she sounds about as good as they get. Consider yourself VERY lucky! I have the same relationship with my neuro, and he isnt a specialist either..but he does see a boatload of MS patients weekly. 79% of his practice is MS patients and interestingly enough, no matter where I go in NJ, if the subject of MS comes up, someone always says to me do you know Dr. >>>>>> and thats MY doctor! He is well respected in MS circles, even not being a MS specailist. So- go see the other one for the heck of it, youll find that its always good to have a back up, but stay on your regular neuros patient list for now. Sounds like she knows what she is doing.

Im very excited that you are starting LDN. I think you will love it and for sure, Ill be around to answer any questions. Have her write the script for 1.5 mgs. Ask for 90 pills. Then, take only 1.5 mgs for the first 6 weeks. If you are tolerating that well (and you will) increase to two pills a night, 3 mgs for another 6 weeks. When I did that, I had some sleepless nights. Id fall asleep fine, but then wake up 2 hours later and run around my house doing laundry and homework! After an hour, Id fall back to sleep! Its because it releases endorphins 2 hours after you take it....this only lasted a week or two, then I started sleeping better than I had in years! After 12 weeks on it, I increased to 4.5 mgs (3 pills) and thats the maximum you should ever take. Always taken at bed time because it works with your sleep cycle- your body resets at night and this is when its most effective. Now, when I get my pills, I ask for 3 mgs and 1.5 mgs, taking one of each every night...reason is, they say sometimes its better to alternate between 3 mgs and 4.5 mgs now and then so that your body doesnt become too used to it. I tend to skip a night of 4.5 and only take 3 about once a week. Truthfully, I dont see any differene when I do it....and Skip delivers this right to my door!
Make sure wherever you get yours, if you dont use Skip, uses the right filler ...Skips info will tell you all about that. The best filler for this, is Avicel.

Keep me posted and CONGRATS on 75% of the battle- finding the right doctor! Thats huge!!
Nikki





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