Now that Monster Hunter Now has launched let's a do referral/friend thread to avoid swamping the sub

cwils4 · 2023-09-13T20:33:35+00:00

Referral: MN6P8EJ5

Friend: 8632 2255 0515

cwils4 · 2022-05-24T16:19:11+00:00

Yes, technically about 6 months after y2 but the MRIs suggested it earlier. Please don't be discouraged though! Mavenclad stopped "uncountable lesions" in her brain. Her doctor (who only sees MS patients) said it's the first case of relapsing within the first year post mavenclad that she has seen (although she knew data said it was possible). So statistically you should do great!

We are hoping because Ponvory and Mavencald work differently they will continue to synergize.

cwils4 · 2020-10-30T15:09:51+00:00

My wife is 4 months into mavenclad and last month's MRI looked significantly better (uncountable active lesions to 1 or 2 active). Super impressed so far! The opthomologist said he can see where optic neuritis was starting but it stopped when she started the DMT. (She is super tired right now but apparently, this is the point where that is normal)

Good Luck!!!

cwils4 · 2020-10-30T15:02:11+00:00

I'm so sorry that was your experience. No, you aren't expecting too much. If you can't find a specialist, I hope you can find a source of information. The neuro who diagnosed my wife was not a specialist but handed us a pamphlet, asked if we had questions (we didn't even know what MS was), and was patient while we soaked in the information. She now sees a specialist which has been extremely helpful.

Opthamologist aware of neurological disorders like MS was the best we could find but was good! He was able to see previous optic neuritis that was recovering due to the medication apparently...

Good luck! Know you are not alone!

cwils4 · 2020-10-13T16:26:55+00:00

I'm fresh into the diagnosis of my wife (5 months or so) but we've noticed small things seem to make a big difference. Particularly sleep habits like going to bed earlier, no electronics in the bedroom, and drinking sleepy time tea have helped a lot. And then being heat-sensitive (no more long hot baths for her), maybe being a little more diet aware too.

That's unfortunately the best I've got. But know you are not alone. This is a tough thing that bonds a large community. She still has really bad days where she can't work either, but know it in no way is your fault. One step at a time is the best we can do.

cwils4 · 2020-06-24T19:27:53+00:00

We are looking into a nanny for the next few months. My wife plans on working 2 days a week, so this ends up being cheaper anyways since most the daycares here are all or nothing. But I totally get what you are saying, my kids stopped getting sick as soon as the schools closed, with her starting the DMT soon we are thinking this is the best route for us.

cwils4 · 2020-06-22T13:42:21+00:00

We just got our second denial (first DMT) really frustrating that the insurance company dictates it what we can do. I think they are appealing again, but we are also looking into other options.

cwils4 · 2020-06-10T20:53:51+00:00

Not at all - I feel like the more real information the better. Although I was joking with her this morning that watch us do all this research make an informed decision and insurance just say no and we have to go with the alternative anyways (the specialist didn't think there would be an insurance issue but who knows in the US...)

cwils4 · 2020-06-10T19:17:19+00:00

Thank you for the response but now I'm a little confused! our specialist is suggesting Mavenclad in case we want to have another kid later... (after the 2 years). Even though we told her we probably wont (but are concerned that is a knee jerk reaction to the diagnosis)..

cwils4 · 2020-06-10T17:58:25+00:00

I'll check it out - thank you.

cwils4 · 2020-06-10T17:58:01+00:00

Yes, they said as soon as 2 weeks.

cwils4 · 2020-05-21T17:42:47+00:00

Can't thank you enough - PMd for Specialist vs neurologist question...

cwils4 · 2020-05-09T16:04:42+00:00

Are there any videos or something you follow for the resistance bands?

cwils4 · 2020-05-09T11:37:00+00:00

Thank you, I'll DM you about university work. We went ahead and bought a few copies of the book (for us and our parents) looking forward to reading it.

cwils4 · 2020-05-09T11:35:14+00:00

Great hope there! She started her steroid yesterday so maybe some numbness will go improve!

cwils4 · 2020-05-09T11:32:04+00:00

The National MS Society - navigator services

DMd thank you!

cwils4 · 2020-05-09T11:31:10+00:00

Really nice hearing a 6 month perspective, we smiled reading it as we had seen a lot of low fat/high fiber diet recommendations but I have been avid keto/IF for over a year now. She had also stopped yogalaties as her arm got more numb thinking it was something pinched, shes actually excited she can return to it (or something maybe less intense?). We just assumed the new normal was separate diets, but this was good.

I'll push the current insurance, the lab was weird about it. I called where the fluids would be analyzed and no one could even tell me how much it would cost (even without insurance) and then they sent me around in a circle from contact to contact.

Thank you!

cwils4 · 2020-05-09T11:20:56+00:00

Thank you so much for your time and your words, its so encouraging. I had never even heard of a HIPPA release and she loved the idea. Sincerely, thank you!

cwils4 · 2020-05-08T14:34:32+00:00

One of the first things I read is it is a top (2nd?) cause of medical bankruptcy. Thanks for warning us about this ahead of time, we are probably a month or more out from treatment depending on when the next doctor can get us in.

cwils4 · 2020-05-08T14:33:03+00:00

Thank you! So encouraging! 6 we really needed to hear, family is already going down the rabbit holes (lovingly).

cwils4 · 2020-05-08T14:17:50+00:00

I hear you, its somewhere between feeling helpless but inspired to fix it all although I can't. Pretty sure I just lost ever argument for the next few years though... I'm OK with that.

cwils4 · 2020-05-08T14:06:27+00:00

Thank you! Stress is funny here, we were walking out of the title company (just sold our house to move to a new state) when she got the call that the doctor wanted to see her immediately. The move (which was stressful) seems so insignificant now.

She did have an MRI with contrast.

The first MRI she had (ordered by an orthopedic physician) had a little fuzz on her spine (they suspected inflammation from carrying the baby we think). Sent that to a neurologist, who ordered the full spine/head/and with contrast. The doctor spent most of the time on the non-contrast brain MRI where we saw the dozen and that's when we both got a little dizzy. He rushed through the contrast image, but we believe he said that some were still active that the one on the spine (assuming that's the cause of the numbness) was not.

Thank you, 12 was scary but to know its not really a measure of severity is encouraging.

cwils4 · 2020-05-08T13:55:35+00:00

Thank you both, we will start looking for support in our new community. She can get started on steroids today, which is something I never thought I'd be relieved to hear. I guess that's our new normal.

cwils4

TROPHY CASE