What a stressful and bizarre experience, I don't blame you for feeling confused, freaked out, and at a loss for what to do next.
My advice is to meet with your neuro and hear what she has to say about it. Then find an MS specialist and have them review your scans, etc. for a second opinion.
Show up for your annual follow-up x-rays and meeting with the oncologist.
You might want to do some research on hemangiomas and MS (apparently it's a common thing, sometimes characterized as nothing more harmful than having a freckle!) and ask your neuro some questions when you see her. Remember that you are in charge of your disease management, and that means researching and being prepared to talk to these people so you can get some answers and direction about investigating it further. Getting a second opinion is always a good idea. I know it sounds like a pain, but I don't think ignoring it is a good alternative (if you were considering doing that).
The first thing that grabbed my attention was that you've only had one flare. It made me wonder about your MS diagnosis.
I hope you'll let us know what you decide to do, I'm concerned about you. Keep in touch, Suzanne.
Jessica, her comment about the two brain lesions being "nothing because you're showing no signs of it" does trouble me. Your facial symptoms could be a sign in itself, and put that together with the swallowing problem and the others you've described, you could possibly be in the early stages.
That said, it does often take time to investigate these symptoms and rule out the numerous other causes. A hundred other medical conditions share similar symptoms with MS. If you strongly suspect MS, you might consider getting a second opinion from an MS specialist.
Contact your local chapter of the National Multiple Sclerosis Society for a list of MS specialists in your area.
Hope this helps, and hope you get some answers and relief soon.
I know how maddening and stressful this must be for you. What has happened to you is all too common, unfortunately. So here's what to do next:
Do not go back to the doc that told you it's all in your head. Find an MS specialist, they are much more experienced at reading MRIs. An MS diagnosis isn't that easy to make, it's a diagnosis of exclusion. So many other medical conditions share the same symptoms that must be ruled out. A neurologist will give you a physical exam to check reflexes, strength, coordination, vision, balance, and sensation. Brain and spine MRIs, a lumbar puncture, and evoked potentials to test vision and hearing are all part of the testing.
For a list of MS specialists in your area, contact your local chapter of the National Multiple Sclerosis Society.
Please come back and give us an update on your LP result, as well as your doctoring decisions. This journey is too stressful to travel on your own. You're not alone in this. Hope to hear from you again.
I'm sorry to hear of your MS diagnosis, but glad that you came to this forum to ask questions and share your thoughts and feelings.
I've been taking Tecfidera for over a year and I'm tolerating it well. The first day I took it, I went into a full body flush and felt a prickly sensation in my face. Since then, I've only experienced a mild prickly feeling in my face an hour after taking each pill, but it doesn't last long. I haven't experienced any stomach upset like some people do.
Hope you're doing well with it and that it will help slow your disease progression. Please do come to the forum with your questions and concerns, or just to vent if you feel like it. Good luck to you!
First, I'm sorry to hear of your MS diagnosis, and glad that you came to this forum with your questions and concerns.
There are so many things that can cause sexual dysfunction, and although MS is one of them, it's good to do a self-evaluation to think about other possible contributing factors as well. Some of these might be: medication side effects, stress, hormone imbalance, a mood disorder that could make it difficult to concentrate, and other diagnosed medical conditions, to name just a few. A lot of people, whether able-bodied or disabled, struggle with a decline in arousal and performance as we age. This would be a good topic to bring up with your neuro during your next appt. You will probably be given the option to try an ED medication such as Cialis or Viagra.
Sexual dysfunction is not easy to treat; I've had some trouble myself. Being a female, I don't really have ED drugs to try, so I've learned to explore sex and find new avenues to enhance the intimate experience, while at the same time placing less emphasis on the climax (since that has become unpredictable) and focusing more on enjoying the act of lovemaking.
In your situation, it's important that you talk with your spouse about your concerns if you haven't already. Putting our insecurities and fears on the table can bring people closer together. It can also ease your mind and possibly deflate your anxiety. You mentioned feeling scare to death at the prospect of sexual dysfunction worsening over time. That level of anxiety certainly won't help in the sack. Please think of this situation as something that you both share, it isn't something you are alone to deal with, as though it is your problem only to solve or suffer with. It belongs to your relationship. You've got to involve your wife in this.
As far as an MS drug restoring sexual function: Disease-modifying therapies are only designed to slow the progress of the disease, and, if you have relapsing-remitting MS, to reduce the number of future relapses and the formation of new lesions. They are not designed to treat symptoms or to restore function.
I hope this helps a little. Please do come back here and let us know if there's anything we can do to help. If you simply need to vent to sympathetic ears, this is the place. Take care.
The way you've described how your symptoms present does not sound like MS. While neuropathic discomfort, which is what you might be describing, is common among people with MS, your symptoms can be caused by a many different medical conditions, including vitamin deficiency, diabetes, thyroid, and others. If you haven't yet, you should see your doctor and describe these symptoms, and the doc will determine which tests to order.