posted
Hi, I'm 39 years old female, it's about two years I've having weakness in my muscles and it's getting worse.It started about three years ago with a very high heart bit (180 bits in a min.) I went to the hospital and my heart was in a good condition, the next day I got a little and stable weakness in my lower legs, I didn't take it seriously, until two year ago it started to get worse, the weakness in my legs was getting more and after few weeks I had in whole my body, but only the muscles. In that time I had different kinds of blood test, MRI, EMG. Everything was negative except a Syrinx on my spinal cord. My neurologist said it is too small and can not be the reason for all my symptoms. The weakness is getting less with well sleeping, good breakfast, movement (not heavy sport or exercises) but it gets worse by not sleeping enough, lieng down too long and not moving. When I'm moving I have to rest and lie down for half an hour. The weakness is not only in my muscles but also my JOINTS, when I walk I can feel the weakness of my joints by the pain, special on my right side of my body. When it's cold I've more pain in my joints special my fingers and toes, sometimes two of my fingers get completely white and numb. When I'm walking in a warm weather, I get swollen hands and feet. I've also breathing problems special if I don't move or I'm lying down on the coach. The muscle weakness is in toes, legs, belly muscles, arms, hands, fingers, shoulder, neck and jaw.My toes are numb and the left leg has less reflex reaction than the right one. The weakness is one day less than the other. The weakness is one day better than the other day but it's not going away, so one day I feel great and the other day for any reason is coming back. I've also TWITCHINGS in all over my body. I've had cramps special in my left leg and most of the time when I'm sleeping. My fingers and hands have cramp when I'm opening the door with the key or opening a can. My tongue is stiff and strange, sometimes difficult to talk but I never had problem with talking. The back of my neck has a kind of strange feeling special with more stress; the strange feeling is on upper side of my neck. I've no sleeping problems, no swallowing problem, no visibility problems and no sensation problems and my muscles didn't get smaller yet but I do feel like I've a fever but I don't really have a fever. I feel good when I stretch my muscles. During my menstruation my weakness gets worse. It is few days that the weakness is different, it's like more and painful if I walk special on left side, legs are heavy and sometimes take an effort to move them, I've a kind of shaking when I'm using my left arm and my left leg, my toes are very strange, next weak I've another EMG and blood test for anti bodies. My neurologist didn't want to give the EMG or blood test; I had to beg him to do it.
Please help me with this? I had also Lyme blood test and MRI but both negative. Is it dangarous if I use medication for Lyme if it is not Lyme?
Posts: 5 | From Netherlands | Registered: May 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi,
Welcome to lymenet
Lyme tests can be false negatives - which means you can test negative and still have lyme.
Some labs are more accurate than others, like igenex.
My advice to you would be to find a lyme literate dr. (llmd) If it is lyme they are the only ones going to give you adequate treatment..if it isnt they can diagnose that too.
go to seeking a dr and post - include the area you can travel to. Sometimes there isn't a llmd available in the immediate area.
Someone will pm you with a name and info. We do not post drs names or info on the board due to political issues surrounding lyme.
posted
Get a western blot done through Igenex, this will give you the best test results possible at this time. http://www.igenex.com/ Call the 800 number it takes two seconds to order the test materials and then go to doc and do a blood draw and have them send it out.
Depending on where you live and if you have had exposure to Lyme then its more likely to be Lyme. Getting Western Blot test is best way to find out seriologially through igenex but Lyme is a clinical diagnosis.
Do you go in the woods or have animals with ticks on them? What part of the country do you live in?
Posts: 167 | From Los Angeles | Registered: Jan 2006
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posted
Thank you very much for the messages. I live in Netherlands, I'll try to find a Lyme specialist in area.
Posts: 5 | From Netherlands | Registered: May 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
United Kingdom: ~British Lyme Disease Foundation ~Lyme Disease Action
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Thanks Threepatrol, tomorrow I've an app. with my neurol., I'll ask him about the tests. Good luck to you.
Posts: 5 | From Netherlands | Registered: May 2006
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posted
Hi Helen! I had all those same symtoms and they have all gotten much better with antibiotics. Some of those symptoms were from Babesia. You are lucky. You have Riamet for Babesia there in Europe. I am an American but I lived in Amsterdam for 2 years and it is possible I was bitten there. You can email me anytime for help.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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I have syrinx also (and apparently lyme, i recently found out and started abx tx--not fun). a "small" syrinx too. it is my thought that the lyme is what triggered it, and it might never have been a big deal otherwise.
i have a lot of your symptoms. it is hard to know what causes what. but, with a syrinx, size does NOT matter, a small one can cause lots of problems. Your doctor may be very wrong.
I hope I am not telling you something that you already know but-- I need to let you know everything you have described could be related to a syrinx (depending on where it is, shape etc, and if there is some blockage in your brain.)
You need to see a neurosuregon that specializes in syringomyelia--they are the only ones that can accurately read the mris. there is a lot more to it than most neurologists know. there are not a lot of them. there is a great organization the American Syringomyelia Alliance Project, www. ASAP. org. Have you seen the website,, if not, Check out their website--I am julia over there.
you will see others from europe posting there too, so they may be of help.
You will get help and you can call the organization directly and you will talk with a real prson to get you a dr. referral. there is also sometimes ways to get $ to help people see the right dr.
Since you KNOW you have the syrinx I highly suggest you focus on that for a bit before revisiting lyme. You can have both--what a ****ty long shot--look at me. But at this point you KNOW that you have a syrinx. The lyme and syrinx symptoms can be very much the same, that is where the confusion come in...but you probaly know taht, that is what broght you to this site?!
I wish I could find a doctor that really knew about both!
please send me a private post and let me know how it goes...
take best of care-Julia
(P.S. to every one else, if you take a look at the website, you will be blown away that there is another disorder that has similiar symptoms, that noone knows about. there is even less researcch on this one--and , guess what it is controversial too in some ways, in terms of tx. PSS. spnial syrinx is a collection fo spinal fluid, in the spine, that can block normal flow of cerebral spinal fluid, compress and/or damage nerves. PSSS. hope i was clear in this post, i am feeling like i am having cognitve stuff--the fog--as they say--not a huge problem before. Is it the mepron??)
Posts: 208 | From Santa Fe | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Helen, I'm so glad you came over to LymeNet to post your query. When I read your post on the other board, I thought it looked like you may have Lyme.
You are getting some very good input here. Good luck.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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LostCityAgent
Unregistered
posted
Helen, I am sorry to hear of your symptom pathologies. It is frustrating. I think that a lateral sclerosis would be rare in your case. Did your neurologist order an MRI of the brain? If so, what were the impressions? Was your spinal MRI's limited at all due to body habitus? Have you been tested for b-12? Be glad that your swallowing has not been affected and your speach, appears to be normal? LD could very well be responsible for this. If you have tested positive for Bb then I would suggest a good LD MD, and to move on from neurology. If no, then a syrnx according to my knowledge could produce similar findings. I would seek a second opinion, perhaps co-opinions from the radiologist and a new neurologist or neurosurgeon who is experienced with this etiology.
ALS is somthing which is really scaring me and I told it to my neuro. but he does not thing it's ALS because my weakness gets better and worse, i heard that in ALS the weakness stays, is that true? but I feel a kind of permanent weakness on my left leg and lately I've pain when I walk. and because I'm having these symptoms for 2 years and last week I had an EMG and it didn't show any weakness, can this still be ALS? I've had every kind of blood test(also Lyme), EMG(twice), MRI's(Twice) and nothing was found but a Syrinx.
Thanks again, Helen
Posts: 5 | From Netherlands | Registered: May 2006
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posted
Not a Dr., but your symptoms sure sound a lot like what I had. I'm much better now after abx, but you've gotten good advice here. Best to check out all options.
I've never heard of a syrinx before. I'll have to look that one up.
Good luck.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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