How do you suggest I find a new doctor and answers to my questions?
I'm lost every time I turn around something new is going on and I don't know what is due to this illness and what may be due to some other reason. I had not seen a Dr in over 40 years I just was always healthy until 2015 when I was at work, I was a diesel mechanic when I was hit by a boom on the tow truck my boss and I were hooking up to a diesel truck cab I was hit in front just above my eyebrow on the left side knocking my head back, the boom then came back hitting me at the base of my skull on the right side.
Not long after that my symptoms began I couldn't hold tools I was using at work I would drop them and sometimes my arms would jerk so fast they would go flying. I started having problems with my memory, sometimes forgetting even how to do my job or even where I was and why I was there. I also started having mood swings making it impossible to do the job I had done for over 25 years.
Desperate for answers
When my wife finally talked me into seeing a Dr I had already started to have so many more symptoms. That Dr thought I had T.B.I. but he sent me to another Dr who thought it was early-onset Parkinson's. Then on the day I was particularly bad I had Dystonia and was choking with every drink and bite I took I went to the E.R. where they did an M.R.I. That's when they said M.S. at that time I didn't know what to think but I went to the neurologist but I was not working now and couldn't afford my appointments so I only went once she too said M.S. that was 2 years ago I got on SSID but had to wait so long before Medicare which begins next month, but now I have a full list of new symptoms and there are no more periods of symptoms-no symptoms every day is a struggle and I need to find a new Dr and answers my question is how do you suggest I proceed and I would love your feedback. Please I'm desperate!
My symptoms
Symptoms now are uncomfortable muscle movements, arms, and legs movement even when I finally (out of pure exhaustion) fall asleep. I pace several hours because my muscles won't let me stop, my memory is even worse at times, I've lost sight in my left eye, I still have boughs of dystonia when my movements DO ease up, along with my memory problems I have mood swings, I have sexual issues where sometimes it hurts to be touched along with other issues, it all gets worse if I get heated (even when it's cool to everyone else, I have breathing issues (that is a new one) ... There are other problems it seems like there's something new weekly or even daily. Like I said I would appreciate your feedback and any help possible thank you.
Hi
! I am so glad you took the time to share part of your story with us. It's sounds like you've been through the wringer, to say the least. It can be very tricky to properly diagnose neurological conditions at times, especially since you did experience a significant head injury. A knowledgeable neurologist should be able to properly diagnose and treat you, no matter what neurological condition you may be diagnosed with. Sure, there are specialists in the field of neurology and you can definitely seek out a specialist in MS for your regular treatment and care physician. The National Multiple Sclerosis Society has a ton of great resources. You can see if there is another neurologist in your area by using their search feature -- https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources.
They also may have local support groups and other treatment resources in your area. And, especially in the age of covid, their MS Navigator program and peer programs are super helpful. You can chat with a trained individual about what you are experiencing and what types of resources you are looking for -- https://www.nationalmssociety.org/Resources-Support/Find-Support/Ask-an-MS-Navigator and --https://www.nationalmssociety.org/Resources-Support/Find-Support/Connect-with-Peers-One-on-One. I also like the much smaller, but helpful group, the Multiple Sclerosis Association of America for great resources and support -- https://mymsaa.org/.
I don't blame you one bit for feeling desperate and just at your wit's end dealing with all of this. Neurological conditions like MS are just like the cruddy gift that keeps on giving. New symptoms can pop up and disappear seemingly at a whim. It's frustrating, exhausting, and just plain HARD. You are not alone in this! This community totally 'gets' what it's like to live with this condition.
You definitely need to be seen by a physician (this is me stating the obvious here), so you can hopefully be offered some viable treatment options. Treatment CAN help with the symptoms you are experiencing. Your breathing issue is definitely something that should be addressed, as it could be a serious issue and may not even be related to your MS. Literally every single symptom you listed has been experienced by some of our members here, so they get it. They get how tough this it.
Please know you are not alone in this. And I hope you get the care you deserve very soon.
Best, Erin, MultipleSclerosis.net Team Member.
Hi Wesley, glad you're almost to the end of Medicare wait 24 mths for coverage. Weird one, we get SSD due to disability, but everyone has to wait the 24 months, except those who will probably die within the first year. I went to a local hospital for all care medical clinic, then met with a financial/charity care hospital rep. Through the clinic saw all the specialists I needed and only paid 10% of the bill. After two years, with Medicare, went back to private non clinic docs.
Takes time to learn what your symptoms are and what triggers them. Heat is a big one for triggers without feeling overheated or sweating.
