I have quiet a few of your symptoms and at times wondered if it was MS as my mother has it. Could it be fibromyalgia as that is what I have. Google it. Ask your doctors to consider it if you think it may be this. Sorry I cant be more help. Wishing you good luck.
Hi Lydia, so much of what you describe here could be MS related, but not all of itt. Hazymazy is right that it could be fibro, too. But then again it could be a number of a dozen or so other diseases that fit this pattern.
MS is a diagnosis of exclusion and the doctors have to eliminate all the other possibilities first. It sounds like the pieces of the puzzle aren't quite matched up yet for you.
I'm sorry I don't remember your history with pursuing a dx - but from what you write here it sounds like you have been on this journey for some time.
It is exhausting to battle the unknown. Don't give up on getting answers - have you found a doctor you like and feel is honestly trying to get those answers for you or are you continuing to be discarded? If it is the former, stick with that doctor. If its the latter, move on.
good luck and see you around,
Hi Lydia. I've had the heart thumping thing just like you describe. Because of a congenital mitral valve prolapse, they started doing ECGs every five years. They found mine was regurgitating at that time, which then disappeared five years later. I only had those spells for a few months, always after eating, and the doc thought they might be esophageal spasms from a little reflux. They haven't happened since. But during that time I was also having a "spell" and my blood pressure was high when it's normally low. I also had a bad case of costochondritis either during or soon after that lasted for about nine or ten months. I was under a tremendous amount of pressure that year, working nights with a long commute in a hostile work environment, got married, moved, got pregnant, and my husband was diagnosed with an often rapidly fatal disease. Besides the marriage and pregnancy, it was the emotional year from hell.
Fast forward ten years, now I have two degenerating valves with regurgitation, many neurological symptoms suggestive of MS but no brain lesions (it's the ONLY reason I don't have an MS diagnosis), a chronic fever of unknown origin, near fainting spells, a cough came on quickly after I started smoking again (somebody slap me), and just the other day my wrist got painful, hot and stiff.
So I start reading about lupus, and guess what. Just like you I start having those aha moments when things from the past come rushing back. Have I ever had skin problems? Occasionally. Hair loss? Yes, off and on, it's been pretty extreme. Joint aches and pains? Yes. I was diagnosed with myofascial pain syndrome during one of these bad spells. Arthritis? Yes. At most only twice, one being just last week. Raynauds? Yes.
But during the past, I've only been tested for ANAs and Rfs and they always come back normal. When I see the doc this Tuesday, I'm going to ask if he can run a full lupus panel. They've ruled out infectious disease as the cause of the fever. So now we need to look at autoimmune, but my screening tests have come back normal, even though they've only tested once for each one.
I guess what I'm trying to say is, as was mentioned above, there are a lot of things that look like MS and some of your symptoms are suggestive of other things, just like mine.
I hope you find a doc that will pursue this and leave no stone unturned. What I'm finding is that's the hardest part, finding a doc that will listen, take you seriously, and not give up until they find the answer. Many docs aren't well educated on some of these things. They all have their special talents, and the hard part is finding the one that has your issues as their specialty. It's difficult, because you don't know what that is yet. It could take a while to find that person who can diagnose you with confidence.
There are a lot of tests with a lot of dead ends. You have to keep going, sometimes get assertive, and move on to someone else if you aren't getting answers. Best wishes on your journey. I hope you find your answers easily. But don't get discouraged and give up without them. If you find a wait and see doc, put him/her on the back burner and find someone else in the meantime.
Hi Lydia ~ We have alot of the same symptoms. I have been diagnosed with central sensitization along with Fibro. CS is basically fibro with alot of nervous system issues ~ like anxiety. But I have to think I could possibly have MS as well. My dr already thinks I'm crazy so I will try to live with my symptoms for a few more months before I go again. My latest one is heat sensation in my thigh ~ as if the car seat warmer is on. I have crazy heart palpitations and throbbing in my neck but have had all of the tests from the cardio and all is fine besides a murmur. Just had a cat scan of bladder due to urinary spasms and all was fine there too! UGH!
~~~Oh and my hand pain swelling is a constant but at night it is much worse.