My MS Journey
Hello all, my name is Michelle. My MS journey started for me at the age of 50. I took a product called Calmax for joint pain but unfortunately, it did not agree with my system.
I developed chronic migraines and two weeks later, I lost my vision temporarily and was diagnosed with MS, all of this in 2017. It has been a roller-coaster ride ever since. I have also been diagnosed with smothering myeloma as well! So with that said, I have been back and forth to the doctors, but I think that they are just as confused as I am with all of the symptoms that I have.
Nevertheless, I know that God is able to see me through all of this. So yes, I deal with chronic migraine, fatigue, osteoporosis, overactive bladder, cognitive disorder, balance issues, left leg limp, tingling sensations in hands and feet, weaknesses in extremities, rib and lower back, bone pain, nausea, high blood pressure, etc.
However, this is why I believe that the Doctor's are so confused. They don't know how to really treat my diagnosis. If anybody knows of a knowledgeable skilled doctor with good bedside manners, please let me know.
Thanks
Wow,
(Michelle)! That's a LOT to be dealing with (as I am sure you know better than anyone)! I wish I had a great recommendation for a doctor that can meet all your needs, but, as you mentioned, your situation is a bit complex. You may need a solid team that communicates well to be able to adequately manage all of your issues. So, that's why places like Mayo Clinic or Cleveland Clinic are often mentioned in conversations where people deal with multiple health conditions. When every service/specialty is "in-house", it can make communication amongst different doctors easier.
However, you don't necessarily need to go to one of these places to get good medical care. If you are able to stay in one care system, it might make things a little easier. I mean, if all of your doctors are under the same company, it might make sharing your records easier. Does that make any sense? I feel like I'm not explaining this very well.
I would definitely try to find a very knowledgeable MS specialist (warning: no guarantees on bedside manner; sometimes the smartest docs seem a little less warm). I would also find a specialist in smoldering myeloma (if you don't already have one). Getting doctors that understand those conditions implicitly could help getting treatment going much easier.
How are you feeling right now? Are you getting any treatments at this time?
Best, Erin, MultipleSclerosis.net Team Member.- Oh my goodness, what a story. Having MS for 50 years seems minor to what you are going through
that's quite a lot to have gone through! And it sounds like all of it was triggered so suddenly. And looking at the timeframe, it also lead right into the pandemic which I'm sure didn't help getting to the bottom of it. I'm glad that you posted this here so we can help brainstorm some options with you.
gave some great advice with considering one of the bigger facilities like Mayo Clinic or Cleveland clinic, or at best checking out the best hospital in your area and trying to see all your doctors there so there's a better chance of them being able to collaborate.
Another route you could consider is something a little nontraditional. I've had a lot of success over the years with diet, lifestyle, supplements and even different bodywork. There's no one approach with any of these that works for each person, but if there's one that appeals most to you, you could give that a try.I'm not sure how you feel about your primary care doctor/GP, but they might be able to offer some insight on diet and or supplements. If you don't feel that you have a good practitioner that you like, perhaps you could find one that's a DO (doctor of osteopathic medicine) as they tend to have more experience in some of the non conventional treatments.
I'm not suggested that they would be an alternative to conventional medicine/treatment, but as you're in the waiting for getting answers and relief they may help you to feel better in your body.
This approach has made a big difference for me both in managing MS as well as migraines. So I'm just passing it along as another tool in the toolbox for you to consider.
Above all, I'm grateful that you're connected in with our community here as a reminder that you are not in this alone.
- Alene, moderator
