I second what @1speechpick says, it must be hard as a doctors to be getting so many referrals, especially patients in really grim situations and I’m sure to turn them away would be really hard, sounds like he’s spreading himself thin trying to help everyone The office hassle can’t have helped…
My Telehealth appointment is today. I’m hoping to get feedback on my upright MRI from early August and schedule Botox. I’ll ask about FIESTA MRI. Does anyone have any other suggestions? I’m definitely going to get at least one appointment scheduled so they can’t ignore me for 5 months.
@stuuke - I’m sorry I didn’t see your question until after office hours for Dr. Hepworth. How did your telehealth appt. go? Did you get your questions answered & get rescheduled for your next appt.? Was there any helpful info in your upright MRI? Was Dr. Hepworth able to refer you for a FIESTA MRI?
It went ok. They said they had received all of my messages so that was kind of disappointing that they just never responded.
He said that the report from the upright MRI said that there was mild impingement on my brain stem. He said some surgeons would say that’s enough to cut out part of my skull to give a little more room.
He was kind of focused on the Mast Cell Activation. He prescribed Cromolyn to see if it would help with the histamine response. He said if that didn’t work that we could try a compound version. He sent me a PDF presentation from Dr. Andrew Maxwell. The file might be too large to send through this website but I can email it if anyone is interested. He also has some videos on YouTube. I’m not sure if he has been discussed in other threads but seems to cover most of our symptoms.
If the prescriptions don’t help he said we could try a muscle block and Botox in January. I tried to get another appointment scheduled but he said it wouldn’t be a problem to schedule something next month. I kind of wish I would have forced the issue.
I mentioned the Fiesta and 3D Ciss and he didn’t seem interested. He downplayed it quite a bit and didn’t seem to think it would help.
I’m not sure but here is the image that he was looking at. I wish he was more open to the Fiesta MRI. Like most doctors he doesn’t seem a fan of patients doing their own research. He wasn’t very receptive when I discussed Kooldude’s findings. Of course if a doctor doesn’t respond for 4-5 months to desperate pleas for help I don’t know what they expect you to do.
One more thing I forgot to mention is that he recommended COQ10. He said that some of the Cholesterol medicine can remove some of the nutrients and that might have made my symptoms worse.
RED FLAG!! I just heard from someone who’s not recovering well from IJV decompression surgery that he FINALLY got through to Dr. Hepworth’s ofc & was told he couldn’t get a telehealth appt w/ Dr. Hepworth until March. I thought that was heartless in light of how desperate & urgent he communicated his need is.
I think you need to call tomorrow & get that next appt. set up in case Dr. Hepworth doesn’t know his schedule as well as he thinks he does.
I’m sorry to hear about the brain stem impingement. It looks very minimal so it’s interesting that Dr. Hepworth said some surgeons would suggest surgery to provide more space.
I hope the Cromolyn helps w/ your MCAS. I know several people who have that diagnosis & have been helped by Cromolyn.
I thought Dr. Hepworth was a proponent of the FIESTA scans. Obviously, I was mistaken.
@stuuke - I’m sorry the Cromolyn hasn’t helped you. I know a couple of other members who have MCAS who take it & have felt it helped them significantly. It’ll be interesting to see if a version of that medication that’s specifically compounded for you makes more of a difference.
I’ve been on the compound version for a few weeks now with no improvement. The muscle block and Botox was Dr. Hepworth’s next step. We’ll see if I can get ahold of him and get that scheduled.
Any recent threads on here with good success stories to lift my hope? Kind of losing steam again.
Are you following a low oxalate diet for the MCAS? If you haven’t looked into that, I recommend it to see if it helps manage your symptoms. Some people have great success, or it at least keeps your histamine bucket from overflowing.
My husband was told he might have MCAS and cut out oxalates, took chromalyn, also tried a low dose of cyclobenzaprine which is off label use because as a muscle relaxant it is a histamine antagonist. Turns out he never had it, and the symptoms were probably vagus nerve related. He also had gastroperisis which just eventually subsided with time too. I hope you find relief soon.
How did your husband find out it was his Vagus Nerve and how did they resolve the issue? I think I’ve tried a low oxalate diet before but honestly I’ve tried so many things it’s hard to remember what I did and for how long.
We’re from Canada, so we booked a private consult at a gastroenterology clinic in Washington state. The person who we saw had like 20+ years experience. She reviewed the upper and lower endoscopies, echo, and other tests, including a blood test for tryptase. The only thing they hadn’t done was a motility test for the gastroparesis, but there is an at-home “corn test” to see how long digestion takes. Based on all those findings, she said there wasn’t a physical reason for him to be experiencing those issues and intolerances, and ultimately she thought it was something to do with the vagus nerve. He took domperidone for the gastroparesis, but unfortunately I don’t think that medication is available in America. He also used ketotifen for a few months, and was on cyclobenzaprine which he uses for multiple purposes.
He took famotidine for MCAS and it messed him up. It decreased his stomach acid so much that it was giving him acid reflux type symptoms, which then the doctors gave him PPIs, decreased the stomach acid even more. It was a vicious cycle. Eventually he figured that out and started very slow with adding acid and digestive enzymes into his diet.
Like you, it’s been so long and he tried so many things that I honestly don’t remember what stuck. Tinture of time… it was months and month and months of frustration. He was on a thin/liquid low ox diet for a couple months, lost a scary amount of weight. Eventually, he was able to tolerate more and it kind of resolved (I think the digestive enzymes helped). He’s having some bounce back vagus-type stuff since his bilateral decompression in December, but it doesn’t seem to be affecting his digestion.
I’m on Ketotifen now. I haven’t noticed any improvement. I really think the Vagus nerve is an issue I’m having but convincing doctors of it is another thing. Did the decompression help relieve his Vagus nerve?
Did anyone else watch the Venous Congestion webinar? It was pretty interesting. The doctor(Yoon-Hee Cha) that Dr. Fargen recommended for Botox was part of the panel.
@stuuke, We were in the process of moving to a different state so I didn’t get to see the webinar, however, I learned after the first one that if I signed up for it, I’d eventually get a link for the recording. Now that we’re settled in our new home, I’m anxiously awaiting the link.
I hope you’re able to get ahold of Dr. Hepworth’s ofc w/o much effort so you can get an appt for the muscle block & Botox. I’ll be interested to see if it helps you. Re: vagus nerve, there are YouTube videos demonstrating exercises to active a “lazy” vagus &/or calm an overactive nerve. The two things I’ve heard most commonly are shocking it by periodically taking a cold shower & the other is humming. You could do some research to see if there’s anything else that seems worth trying.