Last 2 years have been a nightmare and it just gets worse. My life has been completely turned upside down. My symptoms started in 2008, with overheating and numbness in hands and feet. Absolutely cannot tolerate heat, not even a hot shower. I got worse by 2011 and had MRI and LP. Diagnosis was "Possible MS". I was diagnosed with Lupus in 2000, but now doctors are saying that could be wrong. 19 months ago, I woke up with severe watery diarreah and rectal pain. Had 8-12 BM's a day and had no control over it. Most of the time, I didn't get a warning and it just poured out. Dizziness and worse fatigue ever. Referred to GI and had tests out the yeng yang, literally. Tried different diets and meds, nothing made a difference. Referred me to colorectal surgeon for the rectal pain. More tests that finally determined I have pudendal nerve damage, without compression. This was not shocking, as I have lots of nerve damage in different areas. Finally after a year, my diarreah started to slow down a bit. Actually would go weeks to a couple of months without it. Now, it has become extreme constipation. Always feel as though I have to have urgent BM. Can't tell when I do or don't. Yes, I have bladder incontinence as well, even after prolaspe surgery. Two weeks ago, my left arm hurt like crazy, then became weak and had feeling of "goose bumps" all over arm. Had some dizziness also and after a hour and half, thought maybe a warning of heart attack and went to ER. They thought I was having a stroke, but was negative, as was heart tests. Then had feeling of a "bee sting" or a "needle" in left shoulder blade. The pain and goose bump feeling finally subsided after about 5 hours, but weakness was still there. Better now, but drop things all the time, if using left hand. This week my left leg did same thing! I have had problems with a weird feeling in back of left leg for about a year, especially when resting. Just have to constantly stretch it and it will jump if I don't. No pins and needles or creepy crawly feelings. My legs are to weak to stand for very long and will become shakey all over. Fatigue is worse than any lupus flare up. My GP has referred me to MS clinic at Duke and have appt on Jan 5th. He does not like local MS doc I saw in 2011. It's an hour and half away and I am dreading it like the plague! I am literally to tired. Is this my future and does anything make it better. My evenings are intolerable and now becoming depressed because my life has becone non existent. Any advice?
This sounds very much like my terrible past two years or so. I have a neurologist appointment tomorrow. I am taking Tecfidera and it’s not helping me. I think I’m getting weaker everyday. If I could erase the last two years of my life I would. Hoping for happier days for both of us in 2018.
Hope this new neurologist works for you...that you feel heard, concerns taken seriously and you partner well enough that the appointment(s) are exchanges of information, not just a rushed appt where half the doc says means "nothing". Partnering with a "real human being" neorologist is helpful and key...i've found from my experience.
Your challenges appear like a hopeless quality of life to you i'm sure...i remember those days all too well. What works for me to turn my head around so i can start my day over inside it is gratitude...specifically for me A-Z Gratitude Lists. It really works with practice. When my life blows and is very difficult what do i have to lose trying it out!!??
The good news is, it's just your nerves firing in the wrong place at the wrong time, and that is the bad news too. It does get better. When your brain figures out that the nerves are dancing to the wrong tune it will reset the wires. In the meanwhile consider having a glass of warm lemon water in the morning or taking some probiotics, greek yogurt or fermented vegetables to restart your intestines.
Have you ever been in the fun house room with all the mirrors? In one mirror your head is very large, another you are very wide, then another, you are very tall, that is what your story remoinds me of. or the note in a bottle travelling across the sea, slipping from one side to another or upsidedown then rightside up. And you thought you could only have fun at an amusement park!
The first few years are the worst, travelling in a new world without a map, thinking you are lost, not recognizing any landmarks then one morning you will wake and say, ah ha, that again, and you will know how to deal with it.
Hi cathwilms, I'm glad you found us and hope you'll find this community to be a great source of support. If you ever have questions about MS, know that you are welcome to call an MS Navigator at 800-344-4867.
I am so sorry this has happened to you. You must be devastated and depressed. I would be too. I remember those days when showers zapped all my energy. I would wake up shower then go back to bed. I know it makes you nervous to go to this appointment but maybe they can get you started on some medications to help with all these terrible symptoms. They have a lot of tricks up there sleeve. They also have resources like the MS society which can get you a cooling vest. I also did physical and occupational therapy which helped so much to make my muscles stronger so that the symptoms were not so severe. I wish you the best of luck and I will think positive though and prayers that you can finally rest without these symptoms!