Finally a diagnosis!

[jmorin]

I'm a 41 yr old male, and last week I (finally) received a diagnosis of Multifocul Motor Neuropathy.

My story is a long one, but I think it's important the people learn as much as they can about these types of diseases. I'm sure most of you were like me, worried about ALS.

Here goes...

At about age 28 or 30, I started having low back pain. At the same time my left big toe/foot was weak ( progressed to complete foot drop ). I saw an Orthopedic surgeon, but I didn't want to have disk surgery at age 30. (NOTE: VERY STUPID MOVE ON MY PART, but that's another story). So, I deal with the back discomfort and total left foot drop. My back pain comes and goes.

At age 36 (October of 2003) I wake up one day and it feels like someone has inserted a knife in my lower back, I can't stand straight ( or for more than 10 minutes or so). OK, this is serious. I see another Orthopedic surgeon ( a spine specialist this time). I'm out of work for 5 weeks, bulging disk...I have physical therapy for the disk, it gets better, the pain goes away. The surgeon says that as long as I can live with the pain, he doesn't think the foot/leg weakness will be worse. I decide not to have surgery.

Fall 2004 - my right foot seems to be getting weaker. I get nervous and return to the Orthopedic surgeon (different guy, same practice). EMG's and MRIs follow ( lower back MRI, EMG on both legs). the surgeon determines that I have two slightly bulging disks and spinal stenosis. Can surgery wait? Doc says "yes", so I put it off ( I'm young, I don't want to go under the knife just yet). We'll keep an eye on the right foot for now....

Summer 2005 - I'm working on a project around the house and I can't seem to lift the circular saw very well.. what's going on? I can't hold the saw vertically!

Summer/Fall 2005 - decide to have the laminectomy ( L4/L5 ), should stop the weakness in my right foot and ease the low back pain ( left foot drop will probably stay the same).. all this according to the Orthopedic surgeon. I also tell him about the right hand... says, let's work on one thing at a time.

April 06 - back surgery - L4/L5 laminectomy - first few days aren't so great, lots of back spasms, 5 weeks recovery, I'm back at work. During this entire process, every Doc I see comments that they are surprised I don't have more pain in my legs ( a sign of spinal stenosis). (At this point I probably am experiencing MMN symptoms and don't even know it.)

Summer 06 - I see a hand specialist, two different neurologists, I have MRI's on my shoulder and neck, EMG's all over. No one can figure out what's wrong with my right hand ( left foot still is total foot-drop, right foot feels weak, but still has strength).

I'm tied to a desk 80% of the time at work... I'm somewhat ambidextrous, but normally use the mouse with my right hand, well my fingers aren't working great, I switch the mouse to the left side ( I become pretty decent with a left-hand mouse).

summer 06 - I see yet another neurologist ( is this 3 or 4, it doesn't matter at this point). He sends me for a lovely test known as a mylogram.... to see if there is something going on in my neck that isn't showing up on the MRI. They inject dye into your spinal column and then tilt your body so that your head is slightly lower than your feet, the idea is that the dye will literally run down into your neck and head ( and give you a trememdous headache).. meanwhile they take an Xray and a CAT scan.

I have a small bone spur, but nothing serious.

Summer 2007 - this neurologist sends me to a local specialist (neurologist)... OK, I'll go.
So, thus far, I've had the mylogram, numerous EMGs and MRIs and nothing seems all that abnormal.

The "specialist" sends me for bloodwork ( checking for the GM1 antibodies and about a million other things), and yet another EMG on my arm/shoulder. I don't really have elevated GM1 antibodies ( according to him, it isn't a 100% correlation anyway.).

Spring 2008 - He mentions a few diagnosis, one of them is MMN. He sends me to the Mass General Neurology Dept ( yet another specialist).

Two MRI's ( lumbar spine and right shoulder ) in the summer/fall
THREE different EMGs.
4 different rounds of bloodwork - GM1 antibodies, a host of genetic tests, Lord knows what else (blood suger, just to rule out diabetes).

Jan 2009 - MGH Doc's diagnosis - MMN. I have yet to have the IVIG, but should within a month or so. I'll let you know how it goes....


I know this is long, but I wanted to point out that even though I have/had disk problems and the spinal stenosis, my guess is that I may have been experiencing MMN symptoms and not even known it for 2 or 3 years ( until my right hand weakness ).

The laminectomy certainly has eliminated my low back pain, but the weakness in my right foot remains, as well as the left foot drop and the right hand/wrist weakness ( beginnings of right wrist drop, LOVELY).

Now, I've read that in most people MMN symptoms start in the hands, but my guess is that in my case it started in the feet ( of course the disk/stenosis problems didn't help!).

I do have occasional muscle twitches in my legs, but the weakness in my right foot and right hand has remained about the same over the last year or so ( the right hand has even gotten slightly better, enough so that I've switched back to a right-handed mouse). I've only had pain in my legs a few times ( no more than 3 or 4 and that's probably due to the disk problem).

No pain, just weakness ( very very slow progression ).

All the tests and time spent is very frustrating, but it's a rare disease, so I'm dealing with it. I've seen at least 5 different neurologists, one neurosurgeon, and at least 4 different Orthopedic surgeons.

I'm hoping that this is the correct diagnosis. I'm also hoping that the IVIG will help, not only for my well being but for my wife's as well. She has held up very well during all of this, but I know she's very nervous about it all.

I will report back after my IVIG treatment.

meanwhile, if anyone has any questions, please feel free to ask!

Good luck to everyone!

 

[CindyM]

Thank you Jmorin for sharing your story. I wish you every success with your treatment. Glad you decided to join us! Cindy

 

[crystalkk]

Jmorin,

Good luck with your treatment! Keep us posted we like to here good news.

 

[Zaphoon]

I hope the IVIG proves to give you a big, big boost and turnaround! Please do keep us updated.

Zaphoon

 

[Peg B]

Hi Jmorin,

Welcome. I hope IVIG works very well for you. I look forward to it everytime. I am now on every three weeks. One note of warning: the typical side effects, as you may already know, are like a sudden flu. They have meds to take care of it quickly. I waited a week to call the first time (2 years ago this month) and I should have called right away as the meds for the side effects fixed me right up. So if you get any side effects call the Doc's office. Also drink plenty of water the day before and/or several days before you get IVIG. It really helps.

Are you still working? Voice recognition software is a great accommodation if you have trouble typing. Take good care and keep us posted. Sincerely, Peg B

 

[JAKE]

Peg,

If you don't mind me asking, what did the Dr. diagnose you with to recommend IVIG?
I took them in Nov. 2006, possible MMN, for 5 days and then came back in a month and did 5 more days without any success, but yet no side affects. I started seeing a new Dr. in July 2008 and he wanted to do the treatments again, but yet do more of them. He scheduled 16 treatments and on the 10th treatment, I had a major reaction to the treatment and had to be rushed to the emergency room. I experienced headache, chills, fever and then ended with diarrea. Next 3 treatments went well. But on the 14th and 15th treatments, I experienced the exact same symptoms. Jmorin, I hope you have more success than I have experienced with the treatments. May God Bless each of you.

 

[Peg B]

Hi Jake,

I am sorry I was not clear. I used to write here a lot when I was first DX with ALS.(October 31, 2006) but in December 2006 ALS clinic at University of Michigan thought I might have MMN as my progression was so slow. My smyptons started in 2002. So she, the Doctor put me on IVIG to see if I would respond. If I responded well then they could say I had MMN and not ALS. After two years I am still on it and have a differentiate DX of ALS and MMN. They still cannot rule out ALS as I test positive in 3 limbs and do not have all the signs of MMN ie no blood antibodies and one partial conduction block but I am pretty much the same except my hand curls a little more and I get more tired as I get closer to my scheduled IVIG treatment. I am now on every 3 weeks. In fact tomorrow is the day and I sometimes feel like a vampire who needs her fix. (bad joke?)

So I was not diagnosed and given treatment, I was given treatment in order to diagnose. It is a common practice when they cannot figure out the DX because all the symptoms are not clear. I am officially disabled and not able to work due to not being able to write, fatigue, and touble walking and with balance at times. But I am very blessed. You can pretty much ask me anything about it. Hope you get what you need to feel better. Keep us posted. I think it helps to talk about all this stuff.

Did they give you anything to deal with the side effects prior to subsequent treaments? Sincerely, Peg

 

[JAKE]

Peg,

I was diagnosed with "probable" ALS in Nov. 2005, after seeing me a year later and I was still doing well, my local neurologist did some more bloodwork. He thought maybe I had MMN and I did the first series of treatments in Nov. 2006 for 5 straight days. I came back a month later and did 5 more days of them. After not seeing any results it was discontinued. I took nothing but the medicine with those treatments and had no side effects. When I started seeing this new Dr. in July of 2008, he wanted me to take the treatments again, just more of them. He ordered them to be taken with a bag of saline solution administered beforehand to keep me from dehydrating. That is the only thing given to me beforehand for possible side effects. I actually have 1 treatment left next week that is scheduled, but I'm not going to put myself through this again. I have another appointment with my Dr. in Feb. and will discuss this with him. But whatever this reaction was that I experienced, took what strength I have left out of me for about 3 days. I have actually been having problems going on 6yrs now.

 

[Peg B]

Hi Jake,

I am sorry to hear this has been so hard on you. My very first treatment I got two days in a row six hours each day, again at home. After that they gave me the medicine prior to treatment. I never had the five days in a row thing, but I have heard of it. I wonder why they're so many protocols that the different doctors use for what sounds like the same DX. I wonder if five days in a row is too much to take at one time. Are you still able to work?

I know there on the other site for MMN there are others who do not tolerate the treatment well and so don't take it even though they are diagnosed with MMN. I wish you well. Sincerely, Peg

 

[JAKE]

Peg.

I had to quit working 3 yrs ago this month. Once my weakness got in my legs it was too risky for me to keep working in the field as a surveyor. I worked with the state hwy dept. and had 28 yrs in. I had accumulated 3600 hrs of sick leave and was able to go on sick leave for 2 yrs to reach my 30 yrs of service. I was able to retire with 75% benefits. In that aspect I was very blessed. What kind of medicine are they giving you before you take your treatment and what is it for? I'm also curious as to whether your seeing a substantial amount of improvement in your strength and muscles since taking the IVIG treatments. Blessings to you my friend. Jake

 

[Peg B]

Hi Jake,

It sounds like you were very blessed and also that you planned well. I am very impressed that you had 3600 hours of sick time. I did not have but a few days, but I was blessed with short-term and long-term disability. Also the Union kicked in to cover my five months before I could get long-term disability. I had 36.2 something years in education. I was working on my Ph.D. and taught part-time at a couple universities, but stop everything as soon as I was diagnosed with ALS. It was a good thing because I was taking a statistics class and had gotten my first C on a test in graduate school. Not only could I not do the math very well (never could) I could not make the numbers without a great deal of difficulty. I was also having a lot of trouble walking for the past five years before being diagnosed. All in all it was great timing and I too was very blessed.

Regarding medication: prior to IVIG treatment, I take two Tylenol-for overall aches and pains I guess. I take two Benadryl for sleep and relaxation. I get compozine for headache and nausea. I also get solumedrual which is prednisone in IV format. That just helps me feel great the next day and also a little bit red-faced. Outside of the compozine I really don't know why I have this particular mix of medications, but I no longer have any side effects from IVIG. My doctor thinks I am benefiting from the treatment. I know I am not as tired once I get the treatment as I am the week before. But because I no longer work and I rest a lot it is hard for me to know exactly what it does for me. I do know that when I went every four weeks I was very very very tired, so I think that is its main benefit to me. I write with voice recognition on the computer most of the time but now I can also type better as I can control my baby finger of my right hand, which I could not do prior to IVIG. I was really pushing myself very hard and was looking for new job when I was diagnosed. Another blessing in that I did not get a new job and was able to benefit from the job I had financially. Take good care, Peggy

 

[laurel]

IVIG Side Effects

Peg,

I was diagnosed with "probable" ALS in Nov. 2005, after seeing me a year later and I was still doing well, my local neurologist did some more bloodwork. He thought maybe I had MMN and I did the first series of treatments in Nov. 2006 for 5 straight days. I came back a month later and did 5 more days of them. After not seeing any results it was discontinued. I took nothing but the medicine with those treatments and had no side effects. When I started seeing this new Dr. in July of 2008, he wanted me to take the treatments again, just more of them. He ordered them to be taken with a bag of saline solution administered beforehand to keep me from dehydrating. That is the only thing given to me beforehand for possible side effects. I actually have 1 treatment left next week that is scheduled, but I'm not going to put myself through this again. I have another appointment with my Dr. in Feb. and will discuss this with him. But whatever this reaction was that I experienced, took what strength I have left out of me for about 3 days. I have actually been having problems going on 6yrs now.

Hi Jake,
My husband has monthly IVIG for his CIDP. He had one loading dose in the beginning which took five days. Now he takes 1 Gram per kilo of his weight monthly--so he gets it for two days monthly. Unless he drinks lots of water two days before the treatment, he will get dreadful headaches and malaise. He has to really push the water before treatment, during treatment and after. If he does this religiously the after effects are minor compared to not drinking enough. On the CIDP forum on which a large number of people take IVIG, most pre-medicate with both Benadryl 50 mg. and Aleve. And then they will take Aleve at the first sign of headache. My husband used to take Tylenol or Ibuprofen and they did nothing for his post IVIG headache, but Aleve works very well. My husband loses strength in his right hand one week prior to IVIG each month, but within 4 or 5 days of having had the IVIG his strength returns. I would say that with each treatment he feels crummy after for 3 or 4 days and then re-bounds very well within a few days of getting the IVIG. I would encourage you to carry on with the IVIG as to my knowledge there really aren't too many things that work as well for MMN. My husband's CIDP is Madsam which has a lot of MMN features.
Laurel
Laurel

 

[JAKE]

Laurel,

Thanks for sharing the info with me. Would you mind telling me what CIDP stands for and how your husband is affected? I go back to see my neurologist on Feb. 2nd and will discuss with him about taking some of these meds to alleviate the flu like symptoms. If he seems to think he sees improvement in my strength, then I may possibly resume them. Blessings to you and yours, Jake

 

[laurel]

Hi Jake,
CIDP is Chronic Inflammatory Demyelinating Polyneuropathy. My husband has the MADSAM variant which has many of MMN features. My husband began with a weakened ability to grip with his fingers on his right hand. He was referred to a neurologist and had EMG and nerve conduction tests. Neurologist said no problems revealed. Two years later hubby returned as he got worse. Neuro. repeated testing and said he had Carpal Tunnel. Hubby had surgery with seemingly two impinged nerves in rt. forearm and hand. He had rehab after surgery and therapist thought something was odd as he was losing his thenar muscle, but said the nerves took time to re-grow. Hubby procrastinated thinking things would get better. Waited until his right hand and forearm had major atrophy before going to another specialist referral clinic. At this point he could not lift a coffee cup with his right hand or use eating utensils. Referral clinic took one look and a history and said he never had carpal tunnel, but had some sort of progressive muscle atrophy. Hubby went back to original neuro. who repeated EMG and nerve conduction tests (testing only the right limb). Now this neuro says he is unsure of what is going on--maybe ALS. Referred him to a neuromuscular disease specialist. All limbs were tested. They suspect CIDP and do a trial of IVIG. Just prior to first IVIG he got foot drop in the right foot, major fatiigue, and seemed very slow mentally i.e. very poor concentration and some word seeking.

He responded well to the IVIG within a week had regained some strength in his hand. Still has major fatigue and sort the brain fog as I call it. He was tried on an immunosuppressant a year ago and got sepsis. Now is on IVIG only, but probably could use it every 3 weeks instead of every 4 weeks as his hand starts to weaken after week 3. Neuro. wants to try another immunosuppressant, but he doesn't want to risk sepsis again. Lots of people have success with the immunosuppressants. But I think older people are more at risk with them. Hubby is 61 now and he has sleep apnea. So I think he already has infection risk i.e. pneumonia because he uses a CPAP machine, and people with risk of having some sub clinical infection in their body generally are at greater risk with immunosuppressants.

According to his neuro. he remains somewhat of a diagnostic enigma as he doesn't totally fit in with all the CIDP criteria or the MADSAM criteria. No positive antibodies when he had the Sensory Motor blood testing from Athena. He did have slightly elevated cerebral spinal fluid and is nerve conductions show demyelinating and axonal damage.

Good luck Jake and thanks for sending Blessings.
Laurel

 

[jaimebpac]

Hello,

I have never written on these posts before, but I found your situation similiar to mine in progression (minus the low back surgery). My weakness and severe atrophy started in the foot/legs. Did the IVIG treatments help?

Jaime