curtrill

Matt,
No improvements. Going on six years with no explainations from doctors for my expanding symptoms. Feet have now lost a lot of soft tissue leaving little cushioning. This makes standing or walking painful. The edb muscles on top of the feet are virtually wasted away. Cannot engage in any strenuous physical activities. Constant symptoms of decreased tone, strength and stamina in limbs distally. Tongue tires when I eat. Terrible overall fatigue. The more I try to do, the less I can do as a result. Cannot gain strength through exercise.
I've had 3-4 more clear EMG's. Multiple clear exams. Passed the push, pull and tug tests. It seems this is all neuros are interested in.

Hi

Just wondering how you are holding up and whether you were able to make any improvements health wise. I am not doing great, a lot of back pain and new cramps. Haven't seen a neurologist in over a year so it's probably as good of a time as any to have a follow up. Looking forward to hearing from you.

Matt

Hi Curtrill,

I can't believe that it's been three years already since i sent you that first message. I wanted to see how you were doing and if you had any luck at figuring out your condition and hopefully getting better? On my end things are same as before, although for some weird reason i seem to be much more intolerant to exercise and easily out of breath. I almost passed out after a small workout at the gym the other day. Anyhow, i am still passim all the strength neuro tests so everything looks good on that end... How are you? Merry Xmas by the way!

Cheers, Matt

Matt, no I am not improving. I continue to have weakness, atrophy and muscle wasting. It is still a strain to stand or walk. My symptoms never go away. Hands show atrophy, are stiff and cramp anytime I use them. After 2 and a half years I still have no diagnosis. I still have no clinical weakness as detected on exam, I have now been cleared of ALS by four Center Directors. Not to mention all the other assistant neurologist including my regular doctor at a major academic hospital. I have now been cleared by 13 EMGS.....yes 13! No one has any answers that match my symptoms or make sense. Thanks for checking on me. I hope things can improve for us both and all on this board. Blessings! Steve

Hi, I was wondering if you are feeling better and if you found a reason for your symptoms. I thought a few months ago that i was getting better but after a test workout at the gym, i noticed that i cant lift the same weight as before and that i can barely run 60% of what i was able to do 5 months ago. After 20 minutes of treadmill, where i had to walk the last 5 minutes, my legs were shot for 3 days! shaking like no tomorrow. I also noticed the same thing on my arm, if i lie on my side for too long (on my arm), it gets stiff and then shakes for hours with minimal effort...anyhow, the search continues. Cheers, Matt

.....read after my previous post...character count thingy....

I have been thinking about what she said for a few weeks now... I am nowhere near wanting to give blood as that freaks me out a bit...I just wanted to pass on some really unconventional info that I received recently. I am guessing that this is likely a marketing tactic to get people to give blood

Take care of yourself and best of luck at the clinic. By the way, have you ever thought of fibromyalgia? I know this is another disorder that doesnt get a good rep / vibe from physicians but a lot of people are disabled by it...or symptoims that fit that category. Although it isnt really curable, exercise and good diet tend to help over the long run...maybe blood donations too... just kidding.

Cheers, Matt

Thank you for getting back to me. It is great news that you have been cleared of ALS. I understand that you want to keep the posting minimal as you have not been diagnosed with the disease tis board is meant for. It is really frustrating to have to go on feeling disabled from our previous lives that we once had...when we were in shape. I have a really hard time accepting that. The other day we had a "health" day at work and there was a nurse trying to get people to do blood transfusions. I have never given blood as I'm one of those people that gets light headed with too much needle action...The nurse told me that most people that are regular blood donors are in pretty good shape, she thinks that it has something to do with your body having to replenish your blood supply in "overdrive", that's something that the bone marrow of non-donors doesnt normally do. ... continued on next post ... character count limit

Hi Curtrill, I was wondering if there was anything new on your end...any improvement in symptoms? I had a few more tests recently done that came back all clean. A doctor disproved the prevoious doctors alleged weakness of my forearms...The EMG was clean, despite a previous one being dirty-ish. Some twitches continue, I care a lot less about what's going on but I am always mega sleepy! Cheer, Matt

Sent you a PM

Hi, How did your visit at the clinic go, anything new? My weakness is more like a fatigue and a constant ache. The legs get tired easily but are strong on a regular neuro exam... I have more EMGs coming son a few weeks.

Cheers, Matt

Hi,
I just wanted to drop you a line to say that I saw another neurologist who seemed very interested in my case and is looking at the following causes for the way I feel: MG, parasitic infection (chronic), viral chronic infection, Thyroid (TSH, T3, T4), all sorts of auto-immune conditions. He put ALS back on the table since he detected a weakness in my triceps. He doesn't think it's ALS but he is not ruling it out. I will have an EMG done one more time in the next few weeks. He said that we will get to the bottom of it...I will keep you posted. Hope you are feeling better. Regards, Matt

Hello,

I have gone through your posts and it is really unbelievable how close our symptoms match, in fact they are the same. My neuro said that he will not be doing a biopsy since he simply couldn’t justify the need for it. In his opinion it is not something metabolic / mitochondrial as this would have shown up in the earlier years of my life. I didn’t argue too much since he is an ALS / metabolic neuropathy specialist. I had yet another MRI that I am going to go over with him and perhaps this will give hints of something. I will keep you posted if I get useful news from him. I am wishing you the best of luck with the biopsy and hopefully you will find an answer to your symptoms that is treatable. Please let me know of any progress and thanks for getting back to me.

Regards, Matt.

Yes I do. My next appointment is March 2 or 3 can't remember which.

Hi there, I was wondeirng if you were able to get some help with your condition. I am still in the same boat as you and I dont really know what to do to make me feel better. Are you also really tired / fatigued /sleepy all the time? Thanks, Matt

Hi Curtrill,

What sort of other things have you investigated as the cause of your symptoms? For me, I had some blood tests although nothing too extensive, I also had a few mri's that revealed some findings but nothing conclusive. I am leaning towards seeing a lyme disease specialist in the US (I live in Canada) but I also feel like this might be a stretch.