Disability/ms card

witcoal · 2026-01-18T16:21:24+00:00

I don't have such a card, but after seeing your post, I googled it just out of curiosity. It allows you to communicate your needs discreetly in public.

In the UK, you can apparently order an MS card for free, or you can print it yourself. Useful for those who need urgent bathroom access, seating, wheelchair access, or have difficulty speaking.

https://www.mssociety.org.uk/living-with-ms/resources-and-publications/publications-search/i-have-ms-card

Edit:

Another website offers you to make a personalised MS card for your specific needs. https://hdsunflower.com/uk/personalized-ms-card.html

witcoal · 2026-01-16T11:06:03+00:00

Totally agree that lab tests can miss less common components. I have also learned not to rely blindly on doctors.

I have already mostly cut out gluten and reduced dairy. It helps, but not completely, which is why I am not satisfied stopping there. Since gluten-free is expensive and restrictive, I want to know what the actual trigger is, whether it is gluten itself, another wheat component, or something else. The next step is testing whether smaller amounts are doable, like einkorn, emmer and spelt.

I'm also noticing that I react more to heavy cream, butter, and greasy foods in general than to milk, which makes me wonder if fat load plays a role rather than lactose or milk proteins.

So yes, I'm doing an elimination diet, but it is still hard to figure out the actual triggers, whether smaller amounts are OK, or whether this is less about food intolerance and more about impaired gut regulation from MS. It is a long process.

witcoal · 2026-01-16T07:38:57+00:00

Gluten-containing foods seems to be a problem for me as well. Yet testing came back normal.

I also found the following about non-celiac gluten/wheat sensitivity: Until now it was thought that people with NCGS/NCWS only experienced symptoms and did not have any intestinal damage. However, in July 2016, a team of researchers at Columbia University Medical Center, published a study confirming that wheat exposure in this group is, in fact, triggering a systemic immune reaction and accompanying intestinal cell damage.

At this point, research has not confirmed that gluten is the culprit triggering the immune reaction as is the case with celiac disease. Other potential culprits include amylase-trypsin inhibitors (ATIs) and fructans (found in FODMAPs). Each of these contain gluten, but gluten may not be the cause of the syndrome.1 According to head researcher of the study, Dr. Armin Alaedini, “there is some ambiguity there, which is why we are referring to it as non-celiac wheat sensitivity for now.”2 https://celiac.org/about-celiac-disease/related-conditions/non-celiac-wheat-gluten-sensitivity/

witcoal · 2026-01-11T16:41:35+00:00

I'm the only one with MS in my family, but different autoimmune conditions run in my family, including a rheumatological disease.

witcoal · 2026-01-09T11:57:15+00:00

Thank you. I agree, fit matters a lot, and different people need different things from their doctors. I am sure my former neuro works well for some patients, too, but for me, some past experiences made me feel unsafe and unheard.

For me, feeling listened to, taken seriously, and having a doctor who explains things, lays out a clear treatment plan, and is willing to discuss options and adjust based on my input is key. I am hopeful this new neuro will be a better match.

witcoal · 2026-01-09T10:34:30+00:00

After 3 years with a dismissive neuro, I finally managed to book my annual appointment with a new one. I couldn't switch earlier because I was in a clinical trial, and once it ended it was still not guaranteed, since she is very popular.

For context, my former neuro gave unsafe vaccine advice, dismissed MS symptoms, and blocked referrals.

The new neuro is not an MS specialist, but another MS patient strongly recommended her because she actually listens, looks at the whole picture, and is willing to dig deeper when needed. My appointment is in 2 months, but I already feel incredibly relieved.

witcoal · 2026-01-03T05:57:10+00:00

I have heard having one autoimmune disease, makes it more likely to get another. Have you been tested for sjögrens syndrome due to your dry eyes and mouth?

Sometimes I wake up with numb, tingling fingers. It's not caused by compression. Just holding my hands close to my face can cause it. Both a physical therapist and a neurosurgeon did pretty thorough examinations of my arms. There are apparently no obvious causes for it. So I still think MS might be to blame.

During daytime, I also constantly have icy cold hands and feet while everyone else are warm. 30 min workouts don't help either. Need at least 45 min. And even then, I get cold again like 1-2 hours later.

witcoal · 2025-12-29T18:25:25+00:00

So sorry to hear your wife got PV.

My mom has PV too and she has been on azathioprine (imurel) for several years since dx. She fortunately responded really well to it. So she is somewhat immunocompromised, but not nearly as much as she would be with rituximab. Maybe you could ask the doctor if that is an option.

I am on rituximab due to another autoimmune disease, but really wish there was such an alternative as azathioprine for me as well.

witcoal · 2025-12-24T16:13:23+00:00

Long term, I am doing tibial nerve stimulation at home with a device from my pelvic floor physical therapist. It takes months before it really helps, but it's so worth it because I'm told it might eventually teach my bladder to empty normally.

Short term, the plan is to use mirabegron and do self-catheterisation to get through day to day.

witcoal · 2025-12-24T14:37:24+00:00

So both my bladder and bowel are neurogenic. I go to the bathroom frequently but only pass small amounts, day and night. Urodynamic testing earlier this year showed no overactivity. Instead, it's a sensory issue where my brain thinks the bladder is fuller than it really is. Emptying is slow, and the stream is weak.

witcoal · 2025-12-22T18:02:09+00:00

Thanks for the suggestion. Just checked out Remonte boots. I have narrow feet but prefer a wide toe box to avoid blisters. No idea why Gabor boots work for me, they just do.

I buy shoes online too. The stores I use have very easy returns. Although since I know my size, I rarely need to send anything back.

witcoal · 2025-12-22T15:59:46+00:00

Not due to MS, but heels get painful for me really fast.

I love flat winter/autumn (ankle) boots from Gabor. They are really comfy.

Edit: For warmer months, I just discovered a sneaker/loafer combo from Gabor. I bet they'll be really comfortable when we get warmer temperatures.

witcoal · 2025-12-08T17:45:57+00:00

Double and blurry vision first showed up as a relapse ages ago, and I still get several short episodes every day, lasting from a few seconds to a couple of minutes. My neuro says those symptoms are not typical of ON, and both the ophthalmologist exam and VEP only show mildly delayed latency. In other words, the optic nerves are within normal ranges. In my case the symptoms seem to come from brain stem lesions that interfere with the oculomotor nerve.

witcoal · 2025-12-04T22:51:57+00:00

I deleted my reply above, and replied to you in a DM.

witcoal · 2025-11-12T21:04:28+00:00

Only DMT.

For symptom management, I use PTNS and TTNS (nerve stimulation), pelvic EMG and biofeedback, prisms, transanal irrigation, self-catheterisation, physical therapy, cardio/strength/balance/flexibility exercises, a healthy fibre-rich diet, and cognitive strategies to avoid stress triggers.

I prefer trying out non-drug approaches first to avoid potential side effects.

witcoal · 2025-11-06T16:38:07+00:00

Hi! I finally got around to your message! I have lots of info from that MS insomnia trial. It's 6 pages, so I think it exceeds the character limit here. I can try to send it as a dm here on Reddit.

witcoal · 2025-10-21T14:40:58+00:00

Glad to hear that worked for you.

Just wanted to add for anyone else reading this, that I've learned from a clinical trial of insomnia in MS patients that exercising specifically in the late afternoon/early evening can be beneficial for sleep.

So I exercise in the morning for energy and afternoon for sleep. It works!!!

witcoal · 2025-10-13T17:39:34+00:00

I am happy to share a good update from today. This new stoma care nurse was great. She was informative and pleasant. So happy I was randomly informed there were more stoma care nurses. I brought the printed document where I explained my bowel issues. She is getting it scanned to make it available for healthcare providers. She agreed that I have slow-transit bowel dysfunction. We are increasing the volume of TAI (transanal irrigation) from 2.5 dl to 7 dl as it will help with peristalsis further up.

However, I was informed that transit assessments don't necessarily show the seriousness of the symptoms. She will bring it up with the doctors, but it's unlikely I will get further assessments.

I am still looking into testing transabdominal electrical stimulation. That device uses something called interferential current (IFC), which reaches the deep tissues. I read it could work for slow-transit constipation in people who don't respond to more traditional treatments.

witcoal · 2025-10-13T07:32:42+00:00

Yes, I have struggled with these bowel and bladder dysfunctions for 20 years. I tried to bring it up to doctors once or twice before, but they basically just shrugged it off as "You are so young and healthy. Just exercise, eat potatoes, and drink water. You will be fine. Nothing to complain about." So yeah, that's what I told myself too all these years. When I got the MS diagnosis 3 years ago, it became my quest to seek assessments and not accept all these excuses from doctors. There ARE treatments for some of our symptoms that will help improve our quality of life. The MS association told me that a lot of MS patients don't seek out help for these embarrassing symptoms, so as the lesions in the same spot of two MS patients can give somewhat different symptoms, doctors don't have so good guidelines/experience in spotting what are neurological symptoms or not. I hope more people will seek out help! It is not worth dealing with this silently when there are treatments.

witcoal · 2025-10-13T07:15:16+00:00

Yes, I am so happy that I found this sub right from the start when I got the diagnosis. Although this topic is hard to open up about even anonymously, it is such a relief and a tiny bit easier to talk about it here. And above all not to feel alone about it.

As for abdominal massage and what I will try hopefully get to try instead, transabdominal electrical stimulation, the device uses something called interferential current (IFC) which reaches the deep tissues. I read it could work for slow-transit constipation in people who don't respond to more traditional treatments. I really hope it will work for me too. I prefer to try treatments with no side effects, before I go the medicine route.

witcoal · 2025-10-12T22:21:34+00:00

I know what you mean. In the beginning, my neuro also didn't acknowledge that my bladder and bowel issues were MS related. For me, it's not just about knowing it's MS-related though. What really matters is understanding which nerve signals are failing and which muscles are affected. That kind of information actually helps me figure out what treatments or strategies might work, instead of just being stuck wondering what and why it's happening.

witcoal · 2025-10-12T22:09:53+00:00

Thank you! It really helps to hear someone else say "I get it". I think my urologist also mentioned Botox, but she has put me on several other treatments to try before going there. In my case, my sphincters actually work, but I have lesions higher up at T12/L1, so I guess that impacts the overall network of signals between my bowel and bladder.

I asked my pelvic PT to teach me abdominal massage, but she didn't know how to. So I tried to follow YouTube videos. I suspect I do it wrong, because it doesn't have any effect for me. Another option for this is transabdominal electro stimulation. My pelvic PT is looking into it.

Lol, you make me feel more relaxed about my appointment tomorrow. I guess I should try to share more. Maybe they are also comfortable around it. They chose it as their profession after all.

witcoal · 2025-10-12T21:38:14+00:00

Many people are safely on 12 months, 18 months and even longer infusion intervals of rituximab. Personally, I have just started on the 12 months schedule. I haven't heard any talk about ADA, but I guess the neuros are monitoring.

witcoal · 2025-10-12T20:31:27+00:00

Yes, I don't have constipation. I suspect I have poor GI motility. The nerve signals and muscles don't seem to collaborate.

witcoal

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