Practicing Patience

[Seadawg]

Good morning. I'm 48 and new to the forum. My fiance (God bless her loving heart and soul) has been on here awhile doing all the research on my condition at this point. I am in the diagnosis process of either MG or ALS. It started three years ago with just a nasal voice that has very slowly worsened. At the encouragement of my employer (I do a lot of public speaking) and my fiance' I finally sought relief last June thinking they would just find nasal polyps. A MRI, blood work, EMG, single fiber EMG and other tests later it seems they are no closer to telling me what's going on. Most of my symptoms would point to MG I am being told (slurred, nasal speech, saliva, difficulty in speaking). However, blood work has shown negative for MG, and attempts to alter the symptoms with first mestinon and now predinsone (60 mg) have only made the symptoms worse. I fought the predisone treatment for four months, not wanting to put steroids into my body, until I experienced sharp pain in my right shoulder, which then spread into my left shoulder. The pain is sporadic and can come from something as simple as turning a door knob. I am currently under treatment at Wake Forest, but have sought a second opinion from Duke and am waiting for an appointment. In the meantime Wake has scheduled a follow-up now that I am on the predisone. My reason for a second opinion comes more from wanting to work with someone I'm comfortable with than with any dissatisfaction of service. I guess I am just in here for support. I have just allowed my fiance' to take the lead on this and have tried to ignore everything. However, with the new shoulder issues I realize I should start considering all possibilities. I welcome any words anyone may have that may help in my practicing patience. I really just want to find out what's going on and get on with my new life in Christ and my new partner in life. Thank you.

 

[CathyP]

Let me start by saying I am so happy for you that you know JESUS . From my understanding a "dirty" EMG is what really points to the ALS diagnoses. It takes awhile to be diagnosed with ALS because doctors have to rule out everything else. I pray you will find your answers soon and that it is not ALS.

 

[HelenL]

Welcome to the forum, you'll find lots of support and hopefully some answers to questions here. Cathy's right about the EMG, that is the only "definitive" test for indicating nerve damage – even before you may notice muscle damage. If that was "clean", then you're a lucky man in many ways. Hope you find the answers you're seeking, and it's not ALS.

 

[momap53]

Welcome to the forums. The diagnosis process with neurological diseases can be a prolonged one as many here on the forums can attest to. I'm so sorry you're having to go through this. I believe we have several here that utilize the services at Duke and they'll probably chime in later to let you know how they like it. It's wonderful that you have such a caring and supportive partner to assist you during this trying time. You'll find a wealth of information here and a caring and compassionate bunch to guide you.
Good luck with the remainder of your testing and as CathyP said, an ALS diagnosis isn't usually given until all other possibilities have been ruled out.

 

[Seadawg]

I apologize for not being more thorough in my test results. Blood work has shown negative three times for MG. EMG was "dirty" in my left arm and forehead. The reason they are still leaning more toward MG is that there is no sign of loss of strength from what they can tell which normally comes with ALS.

 

[sadiemae]

My husband's rotator cuff was torn, from we thought the hard work he did, but looking back now we feel it may have been caused by weakening muscles. Does it feel like it could be a torn rotator cuff?

 

[Toto's Dorothy]

Sadie, did Les's shoulders ever "heal"?

Seadawg, may I ask why you were so dead set akainst steroids?

Toto

 

[Seadawg]

Yes. My GP says its definitely a rotator issue. I have an appt. with him tomorrow for a complete physical. He thought the predisone might relieve it some, but it hasn't.

 

[Seadawg]

The shoulder is what drove me back to the Dr to start the predisone, because the left shoulder issue started about six weeks after the right and it didn't seem like a normal ache to happen in both shoulders.

Toto,
My only physical symptoms has been some shortness of breath, slurred speech and excessive saliva. When the neurologist went through the list of side effects with the steroids (headaches, irritability, no sleep, weight gain etc...) I made the personal choice the symptoms of what is thought to be MG was less than the side effects of the predisone. Being told MG was not progressive I decided I could live with that. It was when my shoulder issues started that I thought I might ought to go ahead and take it just to make sure it is MG and not something else.

The other discussion I've had with my nuerologist that I feel is getting lost is my mental capacity. I've moved through any field I've practiced in (first journalism and currently as an engineer) with no education beyond high school and consider myself an extremely quick and sharp thinking individual who can make quick decisions under the gun. I expressed to him my frustration with what I consider the "hidden symptom" in all of this. I can't get the thoughts that are in my head out of my mouth as quickly or accurately as in the past and this has seemed to decline over the past year or so. It's EXTREMELY difficult to explain this to someone. It's not that I don't think as well, but I just can't seem to express it as well. My current position requires me to do a lot of speaking and it was this part of the symptom that drove my employer to encourage me to seek advice. I work for a Fortune 50 company that employs over 100,000 employees worldwide as a Quality Engineer (just as a baseline). This is the part of it all that drives me insane. It is emotionally painful to have one thought running through my mind, but have something else (if anything) come out of my mouth. (Silver Lining: It causes me to think twice before speaking.

 

[Ms. Pie]

Yes, I get brain fog too. I just find different words to use in order to express my thoughts. It's a minor problem but is very frustrating at times. I'm not sure if it's age, ALS, too much on the mind or a combination of all three. Try to stay above the emotion of this. We're here for you.

 

[kmendsley]

It definately would be weird that you would have it with no accompany of weakness. I believe there are other neuro problems that have 'dirty' EMG as well if you don't fit under the 'typical' symptoms of ALS....rare...though genetic disorders. I am going down this road...but it is even slower than the regular medical road...so you know it is slow. If you are left without answers though you might want to try going down it to look for mutations or damaged genes. Hope you find support here when you need it most. Good luck to you.

 

[sadiemae]

My husband was about a year and a half into ALS before he was D X. About a month after his D X we went to a specialist, and he got a steroid shot. Went back 3 weeks later and got another (Bigger) shot, and it took care of his pain. The shoulder had been bothering him for about a year before we found out what it was.

 

[deana]

Last two days (Day 14 and 15) on predisone has been the worse. Cramping in the legs, feet and hands. Feeling of weakness in my legs and shoulders/arms throughout the day. Sleep is getting less. Felt I had heart palpitations two days ago in a meeting but they subsided. I called neuro about taking potassium supplement, but he felt the predisone had my blood sugar at pre-diabetic levels and didn't want me taking potassium. Suggested I go to GP if I'm concerned but that I stay on 60mg until my visit with them end of month. Still no relief in voice symptoms, saliva or shoulder pain.

 

[deana]

Seadawg did not realize he was under my name when he posted the above. So, it is not "deana" that has these symptoms. Thank you all who can share some words of wisdom.

 

[notme]

My advice is to seek out a MND specialist. I'm assuming MRIs were done of your shoulders?

One other thing--some people experience chest pains as UPPER BACK pain. Honestly. It's something else to check.

I had an issue with my left shoulder that caused excruciating pain. I the steroids aren't helping, it's not necessarily inflammation. Have they tried any of the numbing injections?

The EMG findings are usually pretty specific in ALS--and if it was Bulbar ALS-those are the areas that would show abnormalities the soonest. There can be findings in the limbs with bulbar onset on EMG long before you 'feel' them, I'm afraid.

Wright is the resident EMG specialist if you can get hold of your report.