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Hello again, a bit of an update. Along with the fibro, mctd and reynauds, my rheum thinks I may also be displaying early symptoms of scleroderma. They also think that many of my symptoms are neurological. Now, I've been to one neurologist, who says that he sees nothing wrong neurologically. But this frustrates me. Some of what I think are neurological symptoms are:
-tremors (in torso and hands)
-EXTREME headaches that come frome nowhere but only last seconds
-Horrible brain fog
-Vertigo
-Excessive amount of muscle twitches.
-Floaters in vision ("z" like shapes or just dots that move around)
This is not an exhaustive list, but you get the idea. So my two questions are: 1) How do you get a doctor to listen? Has anyone else been blown off by neurologists? If so how did you deal with that? And 2) Does anyone share some of these symptoms? What is your diagnosis? What helped get you some relief?
Thanks in advance for any input, this is all just happening so quickly and is becoming really overwhelming
Replies to "Hello again, a bit of an update. Along with the fibro, mctd and reynauds, my rheum..."
One thing I have learned after working with doctors at Mayo long covid clinic, is that Central sensitization syndrome has a lot to do with all kinds of symptoms. I have medicine and food sensitivities. Yet I test not allergic to anything. Calming the nervous system down helps a lot.
@boconn89 Have you seen a neurologist too, or just a rheumatologist so far? I have many of the symptoms you mention. I was diagnosed with fibromyalgia by a rheumatologist. Then I went to a neurologist and through a skin punch biopsy, I was diagnosed with small fiber neuropathy. I’m currently going through more tests with Mayo to see if there is an underlying cause. So now I’ve also been diagnosed with autonomic dysfunction and POTS. So far no underlying cause for any of it but still waiting on some test results. If you haven’t been to a neurologist, you may want to consider that. Wishing you well! ~Robyn
Hi. My diagnosis, MCTD, FIBROMYALGIA. I'm sorry that I don't have answers. But I'm thankful to have come across this group and will be following. My diagnosis came about 3 and a half years ago, I'm 60. I also have had symptom for years. I've been on Duloxetine for about 2 years now. At various times throughout that time, I tried to wean myself off for various reasons. I've had such a hard time with it, but I'm determined. I haven't yet told my doctor that I cold turkey stop taking it two weeks ago. I would like to know how others dealt with the side affects of this drug and if there is an alternate drug with less side affects. I know that it's not recommended to abruptly stop the treatment but the side affects have gotten unbearable. On a positive note, the wrenching low back pain has subsided since stopping the medication. If I can find relief for the nausea and brain zaps, I'll be happy.
God Bless
Linda
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@boconn89 You’re certainly dealing with a lot of different problems. And i really understand your wish to have some answers, but it can take a long time to find answers. Autoimmune diseases are a giant puzzle and most doctors haven’t been able to put the pieces together. You can do two things: 1. get a second opinion, preferably at a university hospital, and 2. Start a journal of notebook of these bothersome symptoms. Note when they happened, for how long, what you were doing that maybe brought them on. Take this chart to your next doctor appointment. Also, vertigo is frequently an inner ear problem so you want to see an Ear, Nose, and Throat specialist. Have you had your eyes checked by an ophthalmologist. ‘Floaters’ can come with age, so get your eye health checked.
Are you able to cope with your fibromyalgia, MCTD, and reynauds alright? Do you think your doctor will be willing to work with you and give you referrals?