Old 05-10-2011, 03:45 AM #46 (permalink)
Member
 
Join Date: 2010
City: Helsingborg
State: Skåne
Country: SWE
Interest: I am interested in learning about ALS/MND.
Posts: 156
Gusflower is on a distinguished road
Gusflower Gusflower is offline
Member
Join Date: 2010
City: Helsingborg
State: Skåne
Country: SWE
Interest: I am interested in learning about ALS/MND.
Posts: 156
Gusflower is on a distinguished road
Default Re: Misdiagnosing ALS

I have now been taking Doxyferm for two months and stopped two days ago. It has all made things worse. I now have to swallow with my face bent down. I have a neuro appointment tomorrow again. I feel much weaker too and my upper lip keeps shrinking and the red areas are dissapearing. It is horrible. I am sure that this is the Ehrlichia eating away in my brain. It s just that there is nothing I can do to stop it. I went to an ear nose throat specialist who said that there was no risc in eating antibiotics and damaging the neuro functions in the throat. This really sucks. I do not want to be a part of this community, this is meant in a good way of course. I love the caring people here who have inspired hope and given their best tips.
Gusflower is offline  
Old 05-27-2011, 09:19 PM #47 (permalink)
Miss's Avatar
Very Helpful Member
 
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,762
Miss is on a distinguished road
Miss Miss is offline
Very Helpful Member
Miss's Avatar
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,762
Miss is on a distinguished road
Default Re: Misdiagnosing ALS

Notme,

I have never heard of a test for bulbar ALS. I thought that was one of the difficult things about receiving an ALS diagnosis - no test available for sporadic ALS. When checking the Internet for a test, nothing can be found.
Miss is offline  
Old 05-28-2011, 02:47 PM #48 (permalink)
notme's Avatar
Extremely Helpful Member
 
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,665
notme is on a distinguished road
notme notme is offline
Extremely Helpful Member
notme's Avatar
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,665
notme is on a distinguished road
Default Re: Misdiagnosing ALS

Quote:
Originally Posted by Miss View Post
Notme,

I have never heard of a test for bulbar ALS. I thought that was one of the difficult things about receiving an ALS diagnosis - no test available for sporadic ALS. When checking the Internet for a test, nothing can be found.

Sorry--I should have been more specific--EMGs can be done -- even on that region. And, you're right, they can't diagnose it--but they can lead a competent neuro to interpret the results -- same as with the EMGs elsewhere.

(not me, lol, no one is sticking a needle in my tongue--nope--no way no how)

I WISH they'd come up with a definitive test! It would be great for a simple blood test that said "Yies or No"
notme is offline  
Old 05-30-2011, 11:11 AM #49 (permalink)
Chase_Corin's Avatar
Member
 
Join Date: 2010
City: Perth, Ontario
State: On
Country: CA
Diagnosed: 11/2010
Interest: I am a family member of someone with ALS/MND.
Posts: 137
Chase_Corin is on a distinguished road
Chase_Corin Chase_Corin is offline
Member
Chase_Corin's Avatar
Join Date: 2010
City: Perth, Ontario
State: On
Country: CA
Diagnosed: 11/2010
Interest: I am a family member of someone with ALS/MND.
Posts: 137
Chase_Corin is on a distinguished road
Default Re: Misdiagnosing ALS

I was told also that Lyme can lay dormant in adults until somthing triggers it.

That was why we persued answers to weather my father had Lyme for so long. Because he worked for the Ministry of natural resources and as a forrest fireman he had been exposed to tics many times but never got the caracteristic "bullseye" rash or anything.

His symptoms only appeared after a horrible viral infection that lasted months. After investigation and having done all the tests Lyme was ruled out but still I am glad we persued it so that we wouldn't be wondering about it.
Chase_Corin is offline  
Old 06-14-2011, 01:54 PM #50 (permalink)
IluvNY's Avatar
New Member
 
Join Date: 2011
City: montclair
State: nj
Country: US
Interest: I am the girlfriend/caretaker for someone with
Posts: 26
IluvNY is on a distinguished road
IluvNY IluvNY is offline
New Member
IluvNY's Avatar
Join Date: 2011
City: montclair
State: nj
Country: US
Interest: I am the girlfriend/caretaker for someone with
Posts: 26
IluvNY is on a distinguished road
Default Re: Misdiagnosing ALS

Hi all, a friend was diagnosed with ALS a few weeks ago. I was and still in shock considering the odds of him getting this fatal disease. Since he gave me the devastating news 3 days ago, I have been researching and simply trying to help, i feel the need to do something. After some research, i have questions and concerns. He shared his report with me from the Neurologist and after researching and seeing the info regarding ALS and Lyme disease, it caught my attention that it states in the neurologist's report that he tested positive for Lyme IgG. Is Lyme IgG the same as Lyme disease? If so, why was he not prescribed meds to treat the Lyme disease? His symptoms are weakness & numbness in hands, difficulty walking up and downstairs and balance issues. I'm not sure what other info is needed to offer advice/suggestions for my friend. Please let me know your thoughts re: the pos testing of lyme IgG and let me know what other information I can provide that may be helpful.

I thank you in advance.
IluvNY is offline  
Old 06-15-2011, 12:15 PM #51 (permalink)
notme's Avatar
Extremely Helpful Member
 
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,665
notme is on a distinguished road
notme notme is offline
Extremely Helpful Member
notme's Avatar
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,665
notme is on a distinguished road
Default Re: Misdiagnosing ALS

ILuvNY

Lyme is notoriously hard to diagnose. He should also have the Western Blot test if the first came back positive (false positives on this test are common) The Western blot is a better test.

Just be careful what you tell your friend--well-meaning friends can make the diagnosis and grief process even harder on those with ALS when they try to convince them something else is wrong with them.

ALS is only diagnosed when all other possible causes have been ruled out. Your friend can get a lot of support here--but, if his EMG showed the things seen in ALS--it'd be best for him to ask his neuro if Lyme is a possible consideration over the ALS.
notme is offline  
Old 06-15-2011, 05:18 PM #52 (permalink)
Bad Balance's Avatar
Senior Member
 
Join Date: 2010
City: Atlanta
State: GA
Country: US
Diagnosed: 12/2010
Interest: I have been diagnosed with ALS.
Posts: 824
Bad Balance is on a distinguished road
Bad Balance Bad Balance is offline
Senior Member
Bad Balance's Avatar
Join Date: 2010
City: Atlanta
State: GA
Country: US
Diagnosed: 12/2010
Interest: I have been diagnosed with ALS.
Posts: 824
Bad Balance is on a distinguished road
Default Re: Misdiagnosing ALS

I don't think that you can get ALS from a tick....

Someone seems quite confused here.
Bad Balance is offline  
Old 06-17-2011, 09:28 AM #53 (permalink)
Member
 
Join Date: 2010
City: Scarborough
State: Ontario
Country: CA
Diagnosed: 11/2007
Interest: Seeing how others deal with daily life with ALS
Posts: 117
Polar is on a distinguished road
Polar Polar is offline
Member
Join Date: 2010
City: Scarborough
State: Ontario
Country: CA
Diagnosed: 11/2007
Interest: Seeing how others deal with daily life with ALS
Posts: 117
Polar is on a distinguished road
Default Re: Misdiagnosing ALS

I don't think it is common practice to scan for Lyme. I don't remember it even being mentioned.
I have spent a fair amount on time in campgrounds , but once again never encountered the bulls eye rash.
And have been told it's hard not to realize you have been bit.
I am also under the understanding that by the time notable muscle weakness has been caused by Lyme there is not that much that can be done and the is still speculation (unproven either way) that it may proceed to ALS ..
Polar is offline  
Old 06-18-2011, 05:49 AM #54 (permalink)
Tom's Support's Avatar
Member
 
Join Date: 2010
City: Leaskdale
State: ON
Country: CA
Diagnosed: 08/2000
Interest: I am a caregiver for someone with ALS/MND.
Posts: 217
Tom's Support is on a distinguished road
Tom's Support Tom's Support is offline
Member
Tom's Support's Avatar
Join Date: 2010
City: Leaskdale
State: ON
Country: CA
Diagnosed: 08/2000
Interest: I am a caregiver for someone with ALS/MND.
Posts: 217
Tom's Support is on a distinguished road
Default Re: Misdiagnosing ALS

Quote:
Originally Posted by NotALS! View Post
An important note about vector bourne diseases, they can be sexually transmitted. The lyme spirochete is a close cousin to syphillis and is suspected to transfer between partners.

We are all exposed to bug bites and infections our whole lives. I think genetics determine which infections trigger ALS or any autoimmune disease as a result. My husband has had chronic fatigue syndrome for years so I have been exposed to whatever he has in addition to the numerous insect bites I've encountered throughout my life.

I"m still taking ceftriaxone although my white blood cell count is sinking. I tried adding other antibiotics but developed C.Difficile so now I need to take care of that. It is a long road either way, if you treat Lyme or not.
This one scares me, but just for a moment. If Tom's trouble, ALS or ALS like lyme is from vector bourne disease and it is catchy, then maybe that is why I now sport a lovely auto immune disease rash. Tom has been going for 10+ years, shrinking daily, refusing to accept ALS diagnosis. The doctors have entertained him with IVIG, antibiotics regimen and even the lyme Dr. now says, sorry, ALS. I do not have time to think about "what if it is catchy?" I have decided that my own body is my own trouble, that I get things like erythema nodosum and long term skin rashes because of allergy to my world etc. I don't think I could deal with it if it were a contagion that was overlooked. Even so, so what? We are in the mess we are in, and moving forward in whatever way possible is really the only option. Short or long, I am here now, Tom is here now and we are going to have the best time possible, damn it!
Lyme, leptospyrosis, ALS, cancer, CFS, heart disease, old age -- nothing on this earth is here forever and these are some of the things that plague humankind. Even the rocks are eroding to become sand, all water is flowing over the earth to turn to salt water.
I choose to accept that life is not fair, I do the best with the cards that I have been dealt, and my children will hopefully live long and well. I feel fortunate for the lessons I am learning, especially about the strength that lies within.
Tom's Support is offline  
Old 06-19-2011, 10:58 PM #55 (permalink)
IluvNY's Avatar
New Member
 
Join Date: 2011
City: montclair
State: nj
Country: US
Interest: I am the girlfriend/caretaker for someone with
Posts: 26
IluvNY is on a distinguished road
IluvNY IluvNY is offline
New Member
IluvNY's Avatar
Join Date: 2011
City: montclair
State: nj
Country: US
Interest: I am the girlfriend/caretaker for someone with
Posts: 26
IluvNY is on a distinguished road
Default Re: Misdiagnosing ALS

Notme...thanks for your response. I have not shared with him most of my research because I did not want to give him false hope. I did suggest he see a LLMD and request the western blot. It seems like compare to my research that he was diagnosed quickly. I read where it often takes months to diagnose ALS but he was diagnosed after EMG and NCS indicated motor dysfunction and other blood work came back neg EXCEPT Lyme IIG. Before he readily accepts this diagnosis, of course he should look at the other possible immune diseases that mimic ALS. When he is ready, I will suggest he joins the forum for support and info. Thank you!
IluvNY is offline  
Closed Thread

Tags
als, lyme, lyme disease, muscle, muscle pain, night, pain, symptoms, tests


Currently Active Users Viewing This Thread: 2 (0 members and 2 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 07:51 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016