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Old 05-02-2010, 12:01 AM
GDA GDA is offline
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Default How much is too much?

Most people on this board seem to report a lot of difficulty and frustration getting to a diagnosis. I am experiencing the same thing: 51 year old male, experiencing weakness and fasciculations in legs (heaviest on the left), with some lesser weakness/fasciculations in arms and lower back. Some jaw symptoms -- difficulty swallowing and jerky jaw (nip my own tongue or cheek on occasion). High level of general fatigue. Symptoms don't go away, but wax and wane noticeably.

My main neuro has EMGed me several times and says its MMN w/ conduction block, and it is progressing so slowly as to be stable. The neurosurgeon that fixed a stenosis in my neck tested me after the surgery and asked me gently whether I had been evaluated for ALS. Finally, I went to see the MMN folks at Johns Hopkins, who added genetic testing to the mix. They did not come to a specific conclusion, but they were sure I did not have MMN because I did not exhibit sufficient weakness.

So I have seen lots of docs, but the opinions have pointed in all different directions. Now my general practice doc tells me she isn't satisfied with the diagnoses, and is urging me to get yet another opinion at Mayo.

My questions for the board is simply when is enough enough? When do you take a rest from seeking the "answer" and just wait for time and events to unfold. I am ready to take a rest from all this doctoring; I'm not satisfied I've got things figured out, but I just don't know whether more running around will do any good right now. Thanks for any or all thoughts.

Last edited by GDA; 05-02-2010 at 12:04 AM. Reason: typo
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  #2  
Old 05-03-2010, 01:28 PM
ronju99 ronju99 is offline
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GDA- Been there and done that. Have had many test and Docs and am not satisfied with their expertease in the field of neurology. It seems that they can hang a shingle out as a specialist with vary little experience in the field. After dealing with what ever I have for the last seven years and with little progression, I've decided to hang it up and joined a gym last week and am going on with life with what ever I have and am just excepting it as part of life. I already feel better by doing so.
I aslo question neurologist that diagnose you and then provide an Infusion Clinic for the IVIG. Seems like a conflict of interest to me.
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68 yrs.old 6'2" 235#. Lost dexterity in left index finger and thumb 9/02. Muscle wasting same area 02/03. Prostate surgery 7/03. Left foot drop after surgery. Had carpal tunnel and ulnar surgery 12/03.
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Old 05-04-2010, 12:31 AM
powder pig russ powder pig russ is offline
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I've remarked previously my observation that the high rate of misdiagnosis reflects more on the lack of knowledge in the field of neurology than a lack of intelligence or skill. We have all seen many different docs and I venture a guess that the majority of them rank quite high on the Smarts scale. Neurology does not appear to be as easy a discipline as cardiology or anesthesiology so I'll cut these guys some slack till better talent or information arrives on the scene. It is possible that despite all the money and study devoted to medicine over the last 200 years there remain a few things 'they' just done know or understand. Heck, we're still doing medical procedures with very similar tools the Egyptians were using doing 3,500 years ago.

I saw four different neurologists in the city where I live and I got three different diagnoses. Three of those doctors were in the same building. Like many here, I decided to take my case to a higher authority, the Mayo Clinic. I returned from the Mayo Clinic and was sent a single piece of paper with the MMN diagnosis that none of these hometown neurologists could give. The doc I kept working with looked at it and said, "I'll go along with that." How do I know I have MMN? I've read enough of the literature to understand that because I had responded (minimally) to IVIg and I have elevated anti-GM1 antibodies there aren't any other choices even if I don't respond to any of the treatments.

When do you know to be satisfied with the diagnosis? I stopped when I could gather a sufficient consensus based on the facts at hand. After plenty of research reading, I realized I understood more on this topic than most docs. I needed to work with docs who understood it better than I even if they were a tad uncertain. You have to be your own advocate (or have a family or friend do it for you) because no doc treating you will volunteer for that role. Sometimes, the docs need to be told/asked/encouraged to get together to do a better job to get a better understanding for a better patient outcome. This gets overlooked so synergistic cooperation may be needed.

GDA, you can take a rest from finding an answer any time you want. You've already given yourself permission. Taking a break won't negatively affect your weakness. Whatever ails you won't care if you do. In my case, it has made a big, positive difference to no longer be subjected to treatment or medical investigation. I decided to get on with living a life that's been affected by a strange neuromuscular diseases that few know about and that almost no one understands. It's actually brings me mirth (in a perverse sense) knowing that there are still some mysteries in the world (in my body actually) and that I can go present to some know-it-all who doesn't have an answer. As long as they share their finding with me, I choose to work with the know-it-alls who are challenged by rather than shirk from my case.

Until 'they' find me a better treatment or diagnosis, I've got books to read, flowers to smell, sunsets to cheer, a checkbook to balance and an occasional progression of weakness to belittle.

Keep breathing.
Russ
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Old 05-05-2010, 12:37 PM
shass5 shass5 is offline
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Hi GDA,

I think we all have a similar story of misdiagnosis. I would suggest going to the Mayo Clinic. I did after a misdiagnosis and mistreatment that exacerbated my symptoms. I saw Dr Dyck Sr. who diagnosed MMN and said it was mild and recommended no treatment. However, the symptoms were limiting my ability to work. My local neuro was not convinced with the Mayo diagnosis so I found a new Neuro at MGH (Dr. Cros) who agreed that treatment (IVIG) should be initiated due to the limitations on my ability to work. The treatments have helped significantly and allow me to work and play. I don't think sitting around and accepting what you have is an option especially if treatment might give you back strength, energy and quality of life.

Good Luck,
Sean
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Old 05-22-2010, 03:53 PM
Mark Kirby Mark Kirby is offline
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I had a similar experience.

The diagnosis process was over a year and it wasn't so much a case of the evidence pointing to MMN as to the evidence ruling out alternatives.

To expand upon Russ's point, I don't think the present state of medical science has all that firm an understanding of all the details of the neurological system when it's working properly, so they would clearly not have a firm grasp on all the ways it can go wrong.

This is especially true for slow acting conditions.

In my case my Neuro thought it was MMN but I was sent to the Lahey Clinic for a second opinion. Don't remember the Dr. name but he was the head of the Neurology department at Harvard Medical school.

He didn't think it was MMN because some aspect of my condition was atypical. I couldn't quite understand the technical jargon he was saying to the residents he had with him and it was over 10 years ago, so I'm not sure what it was. However, the weakness in my arm is in the bicep region and my hands are fine, which I believe is not common.

In any event my Neuro ordered the IVIg and I responded. Before treatment I could barely lift my arm to a 10 degree angle from my side. Afterwards, I could signal a touchdown.

Due to my strong response, that pretty much clinched a MMN diagnosis.

However, I've never regained any strength in my leg, but in hindsight I'd had those symptoms for 15 odd years. So presumably I'd suffered nerve damage to the exposed axons.

In any event, If your doctor wants to try IVIg, and your insurance will pay for it, I would suggest giving it a try to see if it helps. If you have noticeable improvement, then that will clinch the diagnosis and certainly improve your quality of life. If it doesn't really help, then you haven't really lost anything.
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Old 05-22-2010, 07:09 PM
crstr crstr is offline
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I also ended up at Mayo Clinic in MN. I saw Dr. Dyck Jr., was diagnosed with probably MMN w CB and am now having ivig trtmnts every other week. Mine probably started around 2000 (numerous foot surgeries before that) and was diagnosed in 2006 (2 hand surgeries and a spinal surgery before). This is the 1st yr that I have been okayed for twice a month ivig treatments and feel that they are keeping things at bay. I had numerous trtmnts over the last 4 yrs that were daily and then weekly, and then "wait and see"... (one set of which I felt like my old self) but it's tough to get the insurance okay for "daily trtmnts" and then continue with a "constant".

Take a break in your search.....it's a tiring thing in itself.
I am in Michigan...any questions, comments welcome
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  #7  
Old 05-22-2010, 11:27 PM
can can is offline
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Smile Hi GDA

Possibilities---copper deficiency and hyperparathyroidism---( just to name a few! ) can mimic ALS, MMN. Maybe think about getting a gluten sensitivity test ( and gene test ) from wwwEnterolab.com as celiac and/or gluten sensitivity can mimic many diseases and stump many a "smart' neuro etc. Also maybe get a Lyme disease test from ONLY IgeneX Inc. phone# 800-832-3200 in Palo Alto California. Lyme, Celiac/gluten sensitivity and Candida albicans can mimic just about everything but your kitchen sink UNDER THE RIGHT CONDITIONS.-----Dr. Dave Martz, a US oncologist was diagnosed with ALS and was in a wheelchair for many years. HE HAS NOW COMPLETELY REGAINED HIS HEALTH AND THE USE OF HIS BODY AFTER SUCCESSFUL TREATMENT FOR CHRONIC LYME DISEASE. Good luck in your search!
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Old 05-23-2010, 11:38 PM
can can is offline
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ALSO-----The symptoms of Celiac/gluten sensitivity & Lyme disease have been known to wax and wane in certain patients as per Dr. Green ( director of the celiac disease center at Columbia University NY ) and what www.canlyme.com states.
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  #9  
Old 09-06-2010, 02:35 AM
hairald hairald is offline
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Simularities to say the least. You'd think there's some commonality with all of us. Our past and current lifestyles, Past Injuries, Enviroments, Etc, make our stories unique. One thing is certain. Be sure to understand the short and long term effects of any treatments you decide to take on. It's true. Medicine does not have all the answers, but one doc from another can be like night and day. Ask those hard questions until you get them answered. Or switch docs. I like what Russ said! Stay positive, dont stop doing positive things. For me, studying astronomy, and astro photography did more then 1/2 million in IVIGs, and chemo. Wish I knew more about the long haul like now. A good ND is always a worthwhile option. Good Luck Everyone ! Jerry
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