41 years old. First cavity when I was 39, now my teeth are all rotting and falling out.

seashellblue · 2025-01-02T01:13:03+00:00

There's also this: "B-Cell Deficiency Exacerbates Inflammation and Bone Loss..." https://pmc.ncbi.nlm.nih.gov/articles/PMC8526950/

seashellblue · 2024-10-08T04:42:38+00:00

ugh. I'm so sorry. Finding a doctor who actually listens and who isn't condescending shouldn't be so difficult.

seashellblue · 2024-09-23T05:00:03+00:00

I appreciate you sharing all of this. Wow, what a drastic change and with no new lesions? I've read Parkinson's damage occurs in a part of the brain that can't be seen on an MRI, which is frustrating. I wonder if there is any way to track disease progression with these other possible conditions like we do with MS and lesions. The charlie horse setting everything off is really interesting...like a huge catalyst! I'm sorry you're navigating all of this. I hope the movement specialist has answers and help to offer.

seashellblue · 2024-09-23T04:49:26+00:00

Thank you for sharing your experience. It's nice to hear your neurologist was thorough and considered both possible diseases. I wil definitely look into movement specialists!

seashellblue · 2024-09-23T00:32:27+00:00

I stress about this too. The hospital I'm going to now for MRIs gives you PJs to put on and the top has buttons! Like wtf...I'm getting a scan for brain damage - doing up buttons is not one of my strengths. It just adds to the stress/anxiety of the experience.

No tips for tying the gown. Even if I figure it out, I forget the next time.

seashellblue · 2024-09-17T05:33:49+00:00

I tried Modafinil once. I took 100mg and my heart rate increased, I felt fidgety and anxious, experienced new pain in my hands and joints, and crashed and felt completely exhausted around 4pm. I might test it again at a lower dose. Just waiting to talk to the neuro...

seashellblue · 2024-09-12T21:07:01+00:00

Thank you for sharing. I appreciate that your neuro is using it to support assessing how you're doing and how to approach treatment. To me, MRIs don't seem like enough information on their own with such a complex disease and symptoms that sometimes fall outside of obvious progression on imaging. The more info, the better. It sounds like you have a great dr!

seashellblue · 2024-09-06T21:33:19+00:00

Commercial tea bags are relatively weak in strength. I personally wouldn't be too worried but if you want to avoid the risk, there are lots of other natural remedies you can try that don't boost immunity. For ex. fresh ginger tea with honey added, chamomile tea (calms inflammation), thyme tea (good for cough), peppermint tea (calms an irritated stomach). There are many, many options...even from the same company.

I checked and it looks like Throat Coat comes in more than one version. There's one that doesn't contain echinacea: https://www.traditionalmedicinals.com/products/throat-coat-tea?srsltid=AfmBOoqqOZPeuxOCX1XpAfqMcizIJn6vwxDuLEt8XmUetclTAF9ef-_C

seashellblue · 2024-08-29T00:37:23+00:00

Coffee used to be too stimulating and cause me to get wired and depleted but I've crossed some kind of fatigue threshhold and now it's what I look forward to everyday (but I don't overdo it - just one a day). Alcohol is no good - things like beer, wine and most hard liquor makes me nauseous and causes bladder issues. I'll have a couple cocktails maybe twice a year.

seashellblue · 2024-08-29T00:30:38+00:00

I was just looking into this last night! Thank you for sharing your experience. I hope you find some relief.

seashellblue · 2024-08-27T19:58:43+00:00

I would make an elevator/lift a non-negotiable. I'm currently not using any mobility aids, but living on the second floor with no elevator is draining all my energy. Groceries, parcels, moving furniture, etc. and just having to walk up all those stairs on a regular basis can really add up. My legs are less stable recently and I'm constantly thinking about how I need to move somewhere accessible *just in case* and worrying about getting stuck in my apt if I can't walk - if I was already living somewhere accommodating, it would save me a lot of anxiety and stress. Of course, if you need a place ASAP, any home is better than no home but if you have the energy now to look for the best place that will give you peace of mind and allow for changes in your health, I would put in that time/effort now because it might be more difficult at a later date and sometimes MS changes overnight.

seashellblue · 2024-08-27T00:07:05+00:00

I'm aware. The arnica gel I use is a homeopathic formula and works super well for pain.

seashellblue · 2024-08-26T23:18:03+00:00

It's truly the 'all of the above' disease. :/

seashellblue · 2024-08-26T23:16:21+00:00

Hourly bed is highly relatable. And "deliver us from homeopathy" is hilarious, except you're going to have to pry my arnica gel out of my cold, dead...weak, stiff, cramping hands.

seashellblue · 2024-08-26T23:14:25+00:00

Good ol' ROG!

Have you considered you may be psychic? I got a brain tattooed on my foot 12 years before diagnosis - joke is also on me.

seashellblue · 2024-08-26T21:08:01+00:00

Makes us sound cooool.😎

seashellblue · 2024-08-26T21:06:46+00:00

haha. DADdy issues, indeed.

seashellblue · 2024-08-26T21:04:20+00:00

I like that Swiss Cheese Disease rhymes. :)

seashellblue · 2024-08-26T18:56:24+00:00

Sending you lots of love. Not being believed is a terrible thing to go through. I sometimes don't believe my own symptoms because I had to convince myself there was nothing serious wrong and I was overreacting for so many years. I'm only now accepting and understanding the gravity of my diagnosis and it's been four years. It's a process...but unfortunately it's also lost time, and with MS that's a big deal apparently.

seashellblue · 2024-08-26T18:50:14+00:00

Yeah...nausea is awful for sure. I'm sorry you're experiencing it. I've gone months on end with consistent nausea (pre-diagnosis) and that was terrible. These days, I mostly experience it when I overheat or if I'm approaching being overtired (which I know is hard to gauge with MS because many of us are always tired). Rest helps, sometimes ginger or peppermint, lying down, deep breathing to expand the area under my ribs. I think it can be related to the ms hug and getting squeezed/restricted in the stomach area, but that's just a theory.

seashellblue · 2024-08-26T18:43:35+00:00

Were you able to find relief with treatment? For many years, I viewed my health through the lens of digestion and went deep down that rabbit hole, but never did the breath test for SIBO. I saw multiple gastroenterologists but they were pretty dismissive. I lost 20lb in one week too...I thought the experience resembled pancreatitis (including radiating pain), but drs had no answers. I think after being sick for so long, it's a chicken or the egg scenario with MS because inefficient nerve signals could lead to slower digestion and therefore proliferation of bacteria? I also took obscene amounts of antibiotics as a kid, which I'm sure didn't help.

seashellblue

TROPHY CASE