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newbie

Active member
Joined
Sep 12, 2008
Messages
30
Reason
CALS
Diagnosis
06/2008
Country
US
State
wa
City
Lynnwood
We have been flabbergasted, as have the doctors involved, that my husband has been diagnosed with both M.S. and A.L.S. The MS was diagnosed 9 yrs ago and was confirmed by MRI and spinal fluid electrophoresis for oligoclonal banding...definitive diagnosis, with subsequent follow-ups, MRI monitering and treatment. Last year, some new symptoms showed up that were inconsistent with MS and the investigation began for MND. Dx was added for ALS, Bulbar Onset. The doctors do find symptoms for both conditions and all the diagnostic tests were done to confirm both diagnoses. They are all shaking their heads trying to figure out how this thing is going to go! Now, swollen and painful ankle and wrist have caused Dr. to order some blood tests for arthritis, and the Sed Rate and CPR were elevated and the Rheumatoid Factor was positive (with a high value). Crap! Double Crap, or should I say triple!?

How can one person's immune system go so wrong in so many ways?! His immune system is failing in slow motion, kind of like a line of dominos tipping over. Anybody ever heard of this kind of meltdown?
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Holy Cow, Newbie! Your husband wins the prize for having the most and meanest cooties! Agreed, it's a prize no one would want.

If its any consolation, tell your husband he has top billing on my wall of fame. I hope this at least puts a smile on his face.

Zaphoon
 

rocmg

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Joined
Dec 29, 2008
Messages
388
Reason
PALS
Country
UK
State
N/A
City
N/A
hi newbie... sorry to hear about your husband. as if ALS isn't enough to deal with on its own...

the good thing is that R.A. and M.S. can be treated by a wide variety of drugs -- so if one drug doesn't work, your husband can try the next, until he gets one that does work. the ALS researchers are working on new drugs to treat it as we speak, so there is plenty of reasons to be hopeful.

but the whole thing *is* crap. i'm so sorry your family has so much to deal with. it just isn't fair.
 

Big Mike

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Joined
Jan 2, 2009
Messages
322
Reason
PALS
Diagnosis
12/2008
Country
US
State
Montana
City
Fairfield
I often wondered if there were cases of both ALS and MS occuring simultaneously. I guess I have my answer. So sorry to hear about this Newbie. Hopefully, your PAL's progression will be slow, and as we are all hoping, new treatments will arrive before too long.
 

paleshia

Distinguished member
Joined
May 26, 2009
Messages
266
Reason
PALS
Diagnosis
07/2009
Country
US
State
heartland
City
hoosier
newly diagnosed

Hi all,

I have been researching here since may when i saw my first neuro. then I came across this post on Monday. I was diagnosed yesterday with both als and asymptomatic ms at the same time. I can hardly believe this is happening. I started namenda today, and i have been taking co-q-10. I didn't think it could be possible to have both either. My thoughts and prayers for us all.

jennifer
 

newbie

Active member
Joined
Sep 12, 2008
Messages
30
Reason
CALS
Diagnosis
06/2008
Country
US
State
wa
City
Lynnwood
Rare to have both MS and ALS

Jennifer,
So sorry you have both diagnoses. My husband's MS was not discovered until he had a brain scan following a head injury. He wasn't recovering from the TBI as quickly as they thought he should, so did a scan and found lesions. Then they did a lumbar puncture to get spinal fluid for electrophoresis for oligoclonal banding, which was positive. He's been under treatment for MS for 10 yrs and has done relatively well. Last year he began to have other symptoms they attributed at first to progression of MS, but after a while symptoms started to show up that are not seen in M.S. They suspected a motor neuron disease and did more testing before confirming ALS. I'm hoping your situation goes well. It's indeed a puzzle, and I would definately recommend a 2nd opinion at an ALS Center of Excellence in your region of the country. Expensive for sure, but to have both conditions is so rare that a confirmation would be smart.
Newbie
 

paleshia

Distinguished member
Joined
May 26, 2009
Messages
266
Reason
PALS
Diagnosis
07/2009
Country
US
State
heartland
City
hoosier
bizarre isn't it?

My nuero suspected mnd the first consult and had an emg the following week also with suspicion of mnd. Had all the blood work, etc and then the MRI which had ms lesions, so then the spinal tap, positive for ms. All of my symptoms are als though, so as my doc said, "I threw them a curve ball." Right now I have an appointment at the als clinic in October but they will try to get me in sooner. We kept saying, what are the odds? How can I have both? How can I have any of it? I am really at a point of frozen, not sure what to do next.

I am sorry you are in this situation too, I wonder how many other people are running around with white spots on the brain and don't know it. I wish you all the best and I hope to learn to just cherish each day rather than mourning this disease each day.

jennifer
 
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