GBS? Diagnosed with ALS
AnonymousDecember 20, 2010 at 10:18 am
Hello, my name is Robert. This is kind of a long story and I don’t have my hopes up too high but I have some serious questions that the ALS doctor is kind of avoiding.
My mom has had an autoimmune deficiency her whole life, resulting in many miscarriages and almost losing me at the time of birth. Beyond that, she’s never really been energetic which I always believed to be apart of some sort of depression Recently a lot has been going on with her from being diagnosed with GBS then quickly to ALS and now we’re on track to get everything taken care of with that. I have some general questions and stories and I’d like as much advice as possible to see what you all think.
About 7 months ago my mom woke up noticing tingling in her left hand, more so onthe ring and pinky fingers. It would come and go for about a week then it slowly spread to her whole left arm to the point it started facing her palm out to the side… She had almost no movement in her left arm about 1 month after this all started… She’s always been clumsy so she had a mishap at work and fell off a curb because her body weight was off. She ended up breaking a bone in her foot and the doctor told her to stay off of it for 4-8 weeks because of her age, 62. From here leg weakness slowly grew and kind of hit a halt. Since then she’s now having issues moving her right arm… it seem that it’s her bicep that is having issues.
We took her to see her PCP about 4 months into having all of these issues (HMO) and they did some blood tests and noticed she had some autoimmune defeiencies so she was given IVIG’s for 5 days at 5 hours a day. We started seeing results almost immediately in her left hand and arm. The arm began to move back to a normal position, she was able to move her thumb again and her 3 left fingers. Along with that, she was almost able to move her wrist up and down and I could feel the muscles moving around in her forearm.
After about 2 months of not getting any worse, nor better than the first outbreak after the IVIG’s she began to stress out and was unable to eat at home and called 911. She had several tests done; EMG, Spinal Tap, blood test, muscle biospy, MRI and several X-rays. At first they said she had GBS and as the days grew after she was placed in a Care Center she was diagnosed with ALS Now we are here today, thinking it may be GBS because of the positive things after the IVIG treatments.
If you have any recommendations as to what type of doctor I should see outside of the one we’re currently talking to that is an ALS expert (at UCI in Orange, CA) I would greatly appreciate it!
December 21, 2010 at 3:50 am
sorry to hear your mom has had so many issues and is now dealing with this…and you too as her caregiver.
My father had ALS and from the stories I remember my mother telling me, I don’t recall it progressing this way. Of course they didn’t have IVIG back then so I have no idea if it would have helped him or not. It sounds more like MS or CIDP. If it is indeed ALS I have not heard of it starting in one spot and then suddenly going to another. It usually stays in one place and progresses from there I thought. Like it may start in an upper limb and progress slowly or quickly depending on the person, or it may start in the lower limbs. Something about her symptoms just don’t sound right, and don’t sound like they fit with the ALS diagnosis.It also seems ‘late in life’ for an ALS diagnosis, I would get a 2nd and 3rd opinion fast! If she has had issues “all her life” there may be something else going on…could she have had a case of GBS early on or CIDP and with age it is now flaring up or relapsing? I assume they ruled out a stroke? A mini stroke may not show up on an MRI, my mothers didnt. Diabetes? I am even thinking post polio syndrome. Polio was usually mild in a lot of cases, like the flu and most didn’t even know they had it. I am grasping at straws trying to find a puzzle piece for you.
I have a strong feeling she may have had GBS or has had CIDP and it is causing her problems now due to age, stress, and maybe other factors. Let’s see what others have to say about this. We have some very knowledgeable people here and I bet they can help ya a lot more than I can. Please keep us informed…I really don’t think it is ALS and would definitely get another opinion on all of it esp that because that is telling her she has an expiration date and she doesn’t need to even be thinking of that right now.
Prayers and hope to you and your mom
AnonymousDecember 27, 2010 at 9:38 am
Hi, I am not that clear how MUCH benefit IV IgG gave your mother. I understand that it helped her to be able to move. ALS is SUPPOSED to be only motor, so to have tingling in her hands is a little atypical. GBS is SUPPOSED to be symmetric–although lots of people on this site will tell you that their problems were not symmetric. One characteristic of ALS is that it is not symmetric. There is another disease in the the same group as GBS but more like CIDP called MMN–multifocal motor neuropathy with conduction block that is a peripheral disease but that acts very much like ALS–the textbooks say. MMN does respond to IV IgG. If indeed your mother responded to IV IgG, tell the neurologist this again in detail and ask that she get another dose of IV IgG to see if it will help. It should not help ALS, but it should help MMN. If it helps, she should get it AT LEAST every month–maybe more frequently. MMN is more likely to have sensory changes. It is more likely to have EMG/NCV tests like CIDP, but the most important point is that IV IgG may help her a lot.
WithHope for a cure of these diseases
The title of this was supposed to be MMN–but it got changed to Mmn. I did not mean mmmmm. I meant MMN.
AnonymousJanuary 3, 2011 at 6:51 pm
I appreciate you responses on this. We are in the process of getting her SSDI and Medicare now. They had lost her paperwork that I gave them about 2 weeks back. As for a second opinion, it’s getting tough because everything is coming out of her pocket. I plan on making a phone call to a local neurologist to see if we can see them.
*UPDATE* Her legs are getting weaker, more so the left than the right one. Her right arm is showing signs of muscle deterioration. Mouth functions are 100% at this present time.
AnonymousJanuary 6, 2011 at 1:06 am
I am assuming that your mother would be getting Social Security Disability based on her working years. If she is able to get it (shouldn’t be all that difficult at her age), you do realize that there is a 2 year wait to get on Medicare after one begins SSD? Doesn’t she have any other type of health insurance that she can continue to stay on until then? Otherwise, all of her medical expenses will be out-of-pocket.
AnonymousJanuary 6, 2011 at 3:31 pm
It’s a terrible burden for your family to have. I had a Dr. tell me once, no kidding, “you’ve got ALS.” Me- “are you kidding?” Him “Well, I don’t know what else to check on the box.”
You’ve said he’s an expert. You’re already working on a second opinion.
I really just want to wish you all the best and to encourage to join the ALS forum if you have not already.
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