I need some help from someone who has had ALS like symptoms. I am very scared. I am seeing a neurologist next week to rule out ALS. I think it's lyme but I am concerned. I have tongue twitch and the feeling of a constant lump in my throat for the past few days. I also have weakness to my right leg. I am freaking out bbeyond belief. Posted by polar blast (Member # 9142) on :
I have had als like syndrome..it was lyme..have you been having any fevers?also you need to get checked for bart and babs..get an llmd right away.. eric
Posted by Annick73 (Member # 13795) on :
I am on Doxy. I have been taking it for 5 weeks now. Had a major herx 2 weeks ago. I have an appt with a LLMD in 1 month. I have had fever in the past. Now I feel like there are times I am dying. I feel weak. That problem swallowing is my biggest concern now.
Posted by SForsgren (Member # 7686) on :
Have your doctor contact Dr. M who had a clinic specializing in ALS with Rocephin, Ivermectin, and other approaches if it turns out that is the diagnosis.
Posted by hanginginthere (Member # 11685) on :
I understand how you feel...I've been there myself. For me, neuros didn't rule out ALS--they just wanted me to keep coming back every few months so they could monitor me for 'muscle wasting and weakness' Ugh!
The best thing I did was find a good llmd. I was a patient of Dr. M for a year before he closed his practice. The IV antibiotics have done a lot to halt any progression of symptoms. I'm not all better--but I'm so much better than I was.
The other saving grace for me has been this board. I read everything for many months before I posted at all. Do a search for ALS/lyme and you'll find many helpful threads. Look for anything written by Sarah (CaliforniaLyme). She's a terrific source of applicable information and very smart & encouraging too. I've devoured everything she's written
I understand how fears can overwhelm you...especially the fear of ALS. It's a scary prospect. But you, like me, have other symptoms that aren't ALS! My doctors firmly believe that there's a bacterial (and sometimes viral) underpinning to a whole lot of these syndrome-type diseases that nobody knows the cause of.
It's great you have an appointment with a llmd. Actively pursuing getting well is so much better than allowing the ducks to just watch us disintigrate.
Ditto everything said about Sarah (California Lyme), she's a fabulous resource. I was at both ALS Clinics in San Francisco. I had muscle twitching, still have tongue fasciculations and problems with my right foot.
I was tested and told straight out it's not ALS!!
They ruled it out but were unable to rule in anything else. I literally felt like I was dying for a year. It's now been 16 months and I'm currently doing Rocephin IV Therapy every day.
I'm back to the gym four days a week and if you were to look at me you wouldn't think I was sick.
I still am getting well. It's been a long haul but I am getting healthy a little bit every day. I don't have ALS but had many symptoms that mimicked ALS.
Stay positive. See a good Lyme Literate M.D.
Barb
P.S. Read as much as you can on California Lyme's posts, she's helped me so much since she too had ALS symptoms.
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