kiara

Hi Kiara, I don't think I am getting 'better'. I think I am just managing symptoms and pacing myself. I have not had back pain in a couple weeks. But I feel myself shrinking, especially my shoulders and feet. Sometimes I feel a bit off balance but never fall. I am walking on my treadmill often but really slow - 3mph. I do this for 30 minutes. I wonder if I am doing myself any good or just wasting energy! Still working full time, are you?

Hi Kiara

Hope you don't mind me asking about how your symptoms all started? If you could direct me to your original post so you don't have to repeat yourself that would be great. I am also in limbo land and it's terrifying! I'm suppose to be getting engaged soon but I have put a stop to it until I know what's going on.

I had my EMG 3mths ago and it was clear. However that hasn't given me any reassurance at all as my symptoms have somewhat progressed.

Have you had an EMG? If you could share a bit about yourself that would be helpful for me too as we are both females & close in age.

Faith x

Yes, it has been very annoying. I can't figure it out. I guess the dr can when I go in april. I have my fingers and toes crossed that they will figure out your illness. Sending prayers and big hugs your way.

How are you doing? have you gotten a dx yet? I was just thinking about you and wondered. Hugs

Hi Kiara, since we have such similar problems, I would recommend that you try controlling your pain. I just couldn't take it anymore. My neurologist prescribed the tramadol because it is not an opiate. I'm not pain free but mentally I'm so much better and in a better mood around my girlfriend and family. It's amazing what less pain does for your mood. I think I had forgotten what it was like to not be in pain, you know? We had a heavy snow today. I just got home from work and digging my car out. I'm so exhausted. Thank God I'm off work the next two days. Bye for now. Paul

Hey Kiara, I've been feeling better but I think that's because I FINALLY got a prescription for pain. It's nothing major - tramadol 50mg, 3 x / day but it's made a HUGE difference. I know that doesn't mean I'm getting "better" but after 6 months straight of pain, it's sooo nice. My arms are "ok" but I basically don't use them much except for every day tasks. No weightlifting or shoveling here. I am really babying myself. I also pay for it after exercise. I've learned the hard way SEVERAL times. For now, "life" is my exercise, you know? How are you feeling? Any tests recently? take care Paul

sorry menat to pm you

hi kiara eveything ok ?
im trying to avoid doing my last essay, cleaning , fixing stuff etc!
tried a yoga dvd yesterday-very helpfull for my back but no strength in my legs
when is you next appointment

cat is very fussy at moment one day he likes tuna, next ham, then he doesnt like tuna wants fresh fish microwaved, then lamb etc
i think hes upstairs right now writing out menu cards for next week LOL

Kiara, how are you doing? I'm not feeling better but I did have an appointment Tuesday. My neurologist said that I am much less hyperreflexic. I think that's good but I don't feel good yet. He's confused even more but for the first time, he said that "maybe" I might recover within the next 12 months. Don't want to get my hopes up, especially since I don't have a diagnosis. But for the first time in weeks, I have a glimmer of hope. It's kind of scary... I don't want it crushed... anyway, how are you?

Hello Kiara,

Just surfing around, reading different posts, you know. I hope your problem (and Lolita's) is indeed CFS, and not ALS! You are both very young for this to be your problem, although it does happen. Think positively the other way, away from ALS, as long as you can. If it is ALS, then so be it. But it sounds like there is legitimate hope for you two.
BTW, I absolutely LOVE Italy! I've only been there twice so far, but I want to go back if there is ever a way. Trieste, in the north, was great! Then, this summer, we were in Apulia. Brindisi, Manduria, Ostuni, Alberobello, Martina Franco, San Pietro.......Ahhh, what a wonderful country, and wonderful people! I love it!

Hang tough,

Steve

Hey Kiara, in the last 2 weeks, my legs and knees have felt better. But starting about a week ago, I am now getting frequent pain IN my spinal cord. It's not like a back strain, it's sharp stabbing pains in my spine. I have never had back pain before, even with my scoliosis. Maybe my core muscles are getting weaker? Do you have back pain now? Do you know what I mean about spine pain? I hope you are feeling better. I was starting to get excited about my legs, now this...

Yes my joints started cracking and popping since this started in September. I played tennis all summer with no issues. The joint popping and cracking started at the same time as the neuromuscular issues. Some recent back and neck pain. But shoulders and knees are the worst. This is no way to live I used to be so active. The only other sign was my running on 5k runs was slower this summer. I just thought it was because I am 40. Who knew it was THIS!

How are you doing? My knees have been better since I lowered the dose of my muscle relaxer but I have been getting occassional pain in my spine. Do you ever have back or spine pain? This is all new for me. I hope it goes away!

I am sorry to ssay the diagnostic process can take a while, hopefully not to long for you and then you can get the help you need. I have had a rough 3 weeks better it is slowwwwly getting better. Keep me updated on what you find out. Love and hugs to you.

Hi Kiara, Can't remember if I told you that Dr. thinks I have Chronic Fatigue Syndrome. Im just waiting and seeing to see if I get better. My symptoms seem like they are letting up a little bit, but I don't know yet. CFS can cause a lot of various symptoms. I wonder if it is possible you might be experiencing this instead since you are young too and dont exactly fit the demographics for ALS. CFS is considered a neurologic disease as well. It can relapse and remit sort of like Multiple sclerosis can.