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lieselotte3

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Hello
Iwas diagnosed with ALs at the Mayo Clinik and given the usual18 month to 3 years to live what a schock that was. I thought abad back was my Problem do to the Pain I had in my lower back. I am seeing a nother Neurologist now and he tells me thath i dont have Als it is Lumbarsarial Plexopathy speling? and I am being treated once a Week with Solumethrol100Iv and IVIG 900 I have had 8 Treatments now and my Legs still feel very weak need a Walker now to get around the House. Has anybody ever heard of this Disease and what is the Prognosesfor Recovery. Iam vary scaredand confused about it all

Thank you
Lieselotte
 

Al

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Hi there Liesolotte. If you check this website they do list your condition
http://www.neuro.wustl.edu/neuromuscular/index.html . It is not very common and the site is a little hard to understand if you don't have some medical background. It is the Neuromuscular Clinic at Washington State U. in St. Louis. Even if you don't understand some of it you can print it out and take it to your doctor and ask questions. Use the search feature to find your condition. Hope this helps. Take care.
By the way, rather interesting name you have chosen.
 

lieselotte3

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Hi Al
Thank you for your anwser to my Post. I looked up the Site you are right it takes a medical Degree to anderstand it all I have to goe on Wednesday to see my Neurologist again and I had a bad Week falls in my House even with a Walker my Legs just give out and down I go. I need help to get up and then I can walk again. So i have some Questions tfor my neuro this Time. I am still very concerned about having ALS.

Thank You

Ps. the Name is German and is real.so now maby this explains my english spelling Mistakes :D
 

Al

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Hadn't really noticed the spelling mistakes. Don't worry about the small stuff. Hope all goes well at the Doctors tomorrow. Good luck and keep us posted.
 

Carol Deboer

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Good luck tommorrow, hope all goes well and you get the necessary answers that you need. Hope it is not als. However, we will be here for you and we will keep you in our prayers and thoughts. As Al said, keep us posted and call on us anytime you need to. Stay Strong, and God Bless.

Love, Carol
 

lieselotte3

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Hi Carol
Tank you so very much for your kind responce it is so helpful to get suport. My Doctor visit went ok yesterday he is stil convincet that i dont have ALS and proscribed more of the same Treatments he tested my Legs again and my Arms and no change there in the last 2 Months. The FallsI have bin having this Week he tells me come from pinching Nerves in myTighs after siting or laying on my back he tells me to put Pillow under my Knees in Bed and to allways put a footstuhl under my Feet when I sit in a Chair He told me I stil had good Muscelmass in my Legs and no Waightlose . It realy helps me a lot to talk to somebody about this I dont have a lot of Support here so thank you again. After the Mayo told me that I have ALS it is very hard to get this out of my Head because the Mayo is Godshouse of Medicine here in Minnesota.
Tank you so much
 

TBear

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Hi Liesolette
Good luck with your treatment... The Mayo has a great reputation everywhere, and not just in Minnesota. Still, it's odd that you could get an ALS diagnosis so quickly. Here in frosty Canada, they usually eliminate everything else first and then get a second opinion before somebody drops that bomb.
Good luck... and if you need us... we are here.

Cheers

T.
 

lieselotte3

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Hello Tbear
This is exactly what the Neurologist I am with now told me. He said allthe test were not done to come to this Diagnose he orderd more MRIs. The Mayo did MRI on my lower back and lots of Bloodtest and EMG my Neurologist now said he could see why ther was concern about some things on the EMG but other Problems could be the REason for this and I know the Mayo is one of the best places to go . I dont have a lot of Fisiculations or Cramps.So I just hpe for once the Mayo is wrong.

Thank you
 

dana

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I have the same hopes that the Mayo Clinic is wrong. My dad just got back from the Mayo in AZ, and they gave him the same diagnosis as they did last time. "early signs of ALS...see you in 6 months." He tested positive for Lymes Disease at a different clinic, but the Mayo claims that their test was not accurate, and their negative results are the correct ones. We want them to be the wrong ones. Wouldn't it all be so much easier if it was Lymes and not ALS. It seems with this ALS disease, there just is no hope. No matter how positive you try to look at it, things are just going to get worse and never better. They Mayo suggested having a swallowing test done once he gets home (because he has choked a few times, as some of you may have read from a previouse post). Depending on the results of that test, they might want to put a feeding tube in. This kinda freaked out both my mom and dad. My dad is the most optimistic person I know, but this is even wearing on his spirits. How do you all get through it? How do you stay positive and keep your sense of humor? I know when I am feeling down, angry, depressed, etc., someone can say the right thing to me and pull me out of my "funk." What can I say to my dad to pull him out of the "funk" and help him find his happy, positive, humorous self that he was a year ago?
 

Carol Deboer

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Hi Dana,

Sorry to hear about your Dad. Even with the high level of adversity that comes with ALS, you will find that life does indeed go on. I know. It is a different life mind you, but you will find your way. Are there any words that can comfort your dad right now? I don't think so, however, your actions and care will speak mulitudes. Remember, they are still the same people, even with this als thing. It changes a lot of things in your everyday living, but, they still think the same and feel the same. Everyones emotions will run high with all of the modifications that you will have to make, but remember humour and laugh are indeed still the best medicine going. Continue to be upbeat and strong, have faith, have hope. As long as you are alive, you have to live. You will find many bumps along the way and you will find many blessings too. I know. Good luck to your family, and if you need anything, just ask. Blessings to you and your family, and especially your dear Dad.

Stay Strong.

Carol
 

lieselotte3

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Hi Dana
It would not hurt to get a nother Lyme Test done.I spoke to someone who after 8 Test found out he had Lymes and is on Antibiotic IV and he can move his Toes and his Hands again. I had a nother Lymetest done by a Lab independantly cost 700 Dollars and
again I was told not Lyme Disease,I was hoping for the Test to come back posetive.It is crazy how one hopes for anything else just to get some hope.Iam getting a Weelchair now God how depressing of a thougt that was to me I was allways very atletic joging ,Yoga, gardening I miss working in my Garden the most.

Lieselotte
 

TBear

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Hi Folks:
From what I understand, there are several strains of lymes disease and the testing needs to be done on a specific type (usually the strain associated with where the bite happenned). If the test performed isn't specific to the strain it could be negative. Not to raise hopes, but just make sure that, if you think the infestation occured far away from where you are testing then make sure that the test is specific to where it happenned.
Good Luck

T.
 

TBear

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Hi Folks:
From what I understand, there are several strains of lymes disease and the testing needs to be done on a specific type (usually the strain associated with where the bite happenned). If the test performed isn't specific to the strain it could be negative. Not to raise hopes, but just make sure that, if you think the infestation occured far away from where you are testing then make sure that the test is specific to where it happenned.
Good Luck

T.
 

dana

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Even though the Mayo told my dad that he does not have Lymes, he is gonna go to a clinic in Colorado Springs. Someone we know has been going there for treatments and really seems to think that it is helping him. I don't know if it is a mind over matter thing, but whatever makes you feel better is worth a shot. I'm still trying to keep the "it's not fair" mentality out of my head, and look at this as something God has placed in our lives for a really good reason. Maybe my dad can change a lot of lives by the way he gracefully and bravely takes this on. Maybe he can show others that God is good and gractious even during an illness. Maybe instead of cursing God for this, he can say "thank you for the things I still have in life." Whatever the reason this is happening to such a wonderful, compassionate, loving, peaceful, humorouse, and all around good guy, it has to be happening for a good reason. I told my family that if this was happening to someone that nobody cared about, it would not touch as many lives as it is going to with my dad. I just hope that we can stay positive throughout the disease, because it sounds like it is going to be a long haul.
 
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