Trying to figure this weakness out....

[Merepage]

Hi everyone.. I have been reading posts for months and finally have the courage to ask for opinion/advice. Here is my short story..Jan 2102 got pertussis.. turned into indigestion..Hit my nervous system in April 2012.. Chronic Thoracic Back pain left of my spine with headache for months. Had some lyme testing..no CDC positive but positive for Ehrlichiosis..Started lyme meds for 4 months with no improvement...August 2012 calf twitching...some "percieved?" weakness.. Neuro appt then EMG on 8/30.. clean...Continued more meds for Lyme.. no improvement.. Hyperreflexes at follow up Neuro. Spinal tap clear. Twitching spreads to shoulder, left eyelid, thighs, feet and just about everywhere..Walking compromised but not obvious. Started looking at ALS.. Another EMG Oct 2012..clean....Sinus surgery 12/21..Leg weakness is profound now. Both legs.. I can walk on my heals and toes. Went to GP today and he ordered another EMG. Strength tests fine, but I cant walk across the room without needing to sit down.. Not tripping, just total leg fatigue... I am worried sick (4 boys..love being their mom) Arms fatigued too but can do tasks for a short while...Need to get better or at least get a diagnosis.. One year anniversary of this on 1/1/2013. Feel weaker everyday.. Any input appreciated... ALS? UMD? LMD? Something else? THANK YOU SO MUCH

 

[Luke]

Sounds like something is definitely going on but ALS is pretty unlikely to be the culprit, with normal strength and two clean EMGs a year into it. I'm sure this is frustrating for you, and they do need to figure it out, but I'd try to put ALS out of your thoughts. I hope you get answers soon. Keep us posted

 

[Merepage]

I am trying to put ALS out of my mind.. Actually did after the 2nd clean EMG but with this progressive weakness, I am so confused. Trying to find anything else it could be....Thanks for the reply.. I am amazed at the kindness of everyone on this site

 

[vickim]

Idon't know anything about myesthenia gravis(sp) except that the more you do the more fatigued you become. My dr. gave me mestinon which is used for mg but they found it helps with mito. I hope you find out soon. Good luck.

 

[vickim]

sorry went to mod land, it will show up later.

 

[Merepage]

Vicki..I dont understand your message? Please clarify.. THANKS

 

[vickim]

Some posts go to moderation to make sure its okay for posting. You never know when it will happen, but it will show up later. Once you have posted enough it will happen to you too.

 

[Luke]

If you haven't done so already, please read the stickies on this forum, especially the one about clinical weakness vs. perceived weakness. What it sounds like you're feeling is muscle fatigue, which is different from weakness. Many conditions can cause this.

 

[laurel]

Merepage has all your testing been done by the same neurologist? If so, a second opinion from a neruomuscular disorder neurologist might be the way to go. When my husband continued to get worse even after several emg's and nerve conduction studies by the same neurologist, he received a d i a g n o s i s promptly with a neuromuscular disorder neurologist. The new neurologist had state of the art equipment and facilities compared to the first neurologist who was reputable but very old school. It is a possibility that something post viral is happening i.e. pertussis, sinus infection/surgery and now lower extremity weakness. Was Guillaine-Barre ever tossed on the table?

 

[notme]

HI

There are many things that can cause muscle fatigue. i'd agree with the others that two clean EMGs pretty much takes ALS out of the picture, though I'd still search for answers if you're experiencing severe muscle fatigue.

 

[Merepage]

I had all kinds of bloodwork done. No recent virus, just the pertussis. Low vitaminD but thats about it. I just can't believe how heavy my legs feel. I repeat in my mind while trying to fall back asleep at night "2 clean emg's..2 clean emg's". Would foot drop happen after leg weakness? Would I be able to still do heel walk and hop up stairs if ALS? Lots of Xanax til last EMG on Jan 2. It will have to show something with these symptoms. Anxiety stinks! Thanks everyone

 

[Tokahfang]

No, leg weakness in ALS wouldn't let you hop up the stairs. I do hope you get to the bottom of your fatigue causing condition though, that stinks! BFSers get exercise intolerance, but I've never heard of it from just walking across a room except perhaps at the peak of their initial bout of health anxiety.

 

[kiara]

It sounds like my problem, lots of symptoms ( widespread twitching, weakness in ankles and feet, sometimes feelings like pins and needles and numbness, hyperreflexes ) but tests clear. Like you do I'm really trying to put als out of my mind but even if the last EMG is clear my symptoms are getting worse so I don't know what kind of disease it could be, my neuro says we have to wait and see. I think only time will bring us answers.....but waiting in this Limbo is the hardest part.
It's a little strange that you find difficult walking across a room but you can hop up stairs......I feel leg weakness too and for me is more difficult climbing stairs than walking. Good luck, keep us updated

 

[vickim]

My fatigue was all over, my arms would shake trying to blow dry my hair or beat eggs. Vaccuming was a real challenge, walking a distance such as grocery shopping was hard. Even my eyes were tired. It was horrible but my doctor put me on mestinon, 60 mg three times a day and it has helped alot. I can vaccum without feeling like I could just fall over with exhaustion. I have twitches, itches, stinging, muscle cramps, crawling sensations, headaches and neuropathy in my feet. It took 5 years to get a diagnosis. Muscle biopspy is what gave me my diagnosed. I thought for the longest time that I was crazy and I got real tired of repeating my story to different dr.s and then get passed from one to another. It is hard, the waiting and worrying and anxiety,and depression. I feel for everyone here who is still wondering and waiting. I wish you all peace.

 

[vickim]

Another post to moderation! Ugh!