posted
I have been extremely worried this last week as I have been fearing ALS. Prior I had thought possibly MS but with the return of burning pain especially in my legs, loss of muscle (it appears), and the occasion fasciculation I became more worried.
I also have done some research on Lyme disease and realized how similar it is to other conditions. I had blood work done for lyme yesterday. I realize how hard it is to get a positive test.
I have just been very worried lately, and so fixated on what has been going on that is all I do is think about it and lay in bed because I am depressed.
Here is my story. I have been having trouble swallowing for a few years now, never really made the connection until recently.
My neurological symptoms have started in November. It lasted 4 days. I got pain in the palm of my right hand the next day went to my arm, than following day legs. My legs felt painful.
I then saw a massage therapist for the first time, and my symptoms went away aside from my chronic back and neck pain.
January 5th my symptoms returned in the exact same pattern starting in the palm of my hand. Only this time lasted 17 days. I had experienced shocks throughout my body including my neck and in random locations.
After a massage I started experiencing what I call flutters in my legs. They feel like something is popping or fluttering under my skin.
It feels like bubbles, better described as gas bubbles I generally feel it once and goes to another location, I feel these throughout the day. They are quick and feel like vibrations sometimes too. I remember one time after a massage my gums started going off like shocks.
Then shortly after my arms and legs were tingling a lot and went numb. I recall a time waking up and feeling shocks going off on my foot. Symptoms got worse everyday than got better. I then went one week symptom free. Than again pain in palm of hand, than legs. I briefly felt a few shocks go off in my body but was very short lived only a few hours.
I have been experiencing pain in both arms and legs, my joints are constantly cracking, I get spasms and twitches and noticed at one point within the last few days fasciculations under my skin. Don't feel them as much for the last few days.
I have also noticed I lost a lot of weight which I had not paid much attention to and both my legs appear a lot smaller especially the bottom half. My legs are not as painful as they were a few days ago but when I stand on them for awhile they feel different.
I find I am also always dropping things, and my hands hurt and I don't have the strength I once did.
I noticed today I had my legs up in the air and they were quivering.
I also looked at my tongue recently it was moving a lot but some days very little movement.. Could have been anxiety.
I also noticed my mouth was extremely dry on Sunday but had drank a lot of water prior. The following day I started. to lose my voice. Sometimes I feel like there is phlegm in the back of my throat but there is nothing there.
My hands really seem to be hurting. A correlation I've made is that my symptoms return each time I tend to over use my hands. Whether I am cleaning, writing Etc...
My symptoms have mostly gone into remission 2 times for 1 1/2 months and 1 week but returned when I overuse my hands.
Oddly enough my sister is going through 90% of the same symptoms as me. Hers started in the summer where mine in November.
posted
Hi and welcome here - just broke up your text so that people will be able to read it more easily.
Yep, all this sounds like Lyme - the bacteria hit the nerves, the muscles, all the various parts of us. And as you mention, the symptoms change around, they disappear and reappear - it's called relapsing symptoms.
It's hard for tissues to recover when utilized, since the bacteria, for example, use up our magnesium which is needed for ATP energy for the muscles.
You will feel better with some treatment. You and sounds like also your sister are going to need to see a Lyme-treating doctor. You can post your request for referrals in the Seeking A Doctor section. Canada isn't doing very well re having LLMDs - Lyme-literate medical doctors - I don't know whether there are any Lyme-literate doctors near you or whether you will need to travel to the US.
Do you remember being bitten by ticks at all? And how about your sister, if she does? Still, ticks can be so tiny that this can happen without having seen them.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Shouldn't this be moved to the Medical Questions section? Seeing that it's about symptoms and such. I think it would get a lot more responses too if it's moved to that section!
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
Neither of us recall being bitten by a tic. At this point the pain in my legs is getting worse it burns. This is something I've never experienced before. Especially in the shin area where I feel I lost muscle. I spend a lot of time in bed if I am not working. These symptoms have become overwhelming.
Posts: 3 | From Ontario Canada | Registered: Feb 2015
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posted
Many people don't ever remember being bitten by a tick. I never remember one. In fact, I didn't even know what a tick looked like until after I was diagnosed and saw pictures of ticks after researching the disease.
Ticks are small, some are just the size of the period at the end of this sentence. Crazy but true.
I agree with Lymetoo that taking magnesium would help. It calms your nervous system. Take magnesium glycinate or citrate. Don't take magnesium oxide.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
Have you posted in the Seeking a Doctor section on this forum yet? They can help you find a Lyme Literate Doctor in your area.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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I'd also look into your prescription drug history. Cipro, levaquin and other quinolones can cause the leg symptoms and other problems. The symptoms can happen after taking the drugs and linger for years.
2013 FDA Warning about Fluoroquinolone antibiotics causing PERMANENT damage
posted
I did see my tick, and can date every symptom, so that helps me make it more real in talking with others who never saw the tick.
Posts: 13116 | From San Francisco | Registered: May 2006
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
The leader of my local Lyme support group had a mother who thought she had ALS and progressed with that disease, never knowing she had Lyme until it was too late. She is doing amazing work trying to educate the public on this. Here is a link that might be helpful to you.
I'm not saying that all cases of ALS are Lyme, but I think there is definitely an overlap. I am pretty sure I have read that with ALS, you don't have pain - but instead you have gradual muscle atrophy and eventually have difficulty swallowing and with bodily functions. The pain is more associated with Lyme.
I would be happy to connect you with the leader of my support group if you would like to get more details from her. Good luck to you and I am glad you found this forum. There are many here who can direct you and provide education and support.
Posts: 2386 | From New England | Registered: Aug 2011
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