ALS/mg/trying to find hope

[Kerbear]

First I appreciate your message to newcomers there sure is alot of misleading information on the net. Second I'm not really asking if I have ALS, as I have been told 3 times I do and now find myself at one of the leading ALS centers in the south, I have had 3 emgs first neuro said it was technologist failure so I went to a second who performed it himself and called a senior neuro muscular Dr in. My emgs show normal ncs fascillations crds, and polyphasic units. This started in 2012 with inability to turn my ignition and lift my right leg.. We thought stroke, since then I have had 3 mris, spinal tap, ct scans, testing for autoimmune alot of steroids negative mg testing and now that I am at a major hospital the neuro did a 1.5 hour physical and history and said that we she would be doing 21 additional blood tests, if none of that came back then a single fiber emg to further rule out mg and if all that came back as she expected we would be looking at ALS....I know she saw my fear when I said I have now been told this three times and it has almost been 2.5 years I thought ALS was off the table wouldn't I be in a wheelchair by now, she very kindly said no and from what I am observing in your sharp reflexes and other testing I would like you to be patient ALS is a disease of ruling out any other possibility but you have met all of the diagnostic criteria. I have the single fiber emg next week once ally blood work came back negative it seems we are moving much faster, what took months to get my appointment now seems urgent with Nurses and care coordinaters calling every day, meanwhile I am unable to do 90% of what i once was and now my family is watching me have speaking and chewing swallowing problems. I have a great support system my husband just shows up each day with another way to keep me independent, shower chairs, handles cleaning wipes, talk to text, all kinds of kitchen gadgets to keep me cooking somewhat. So I guess my question is how likely is mg to still be it the blood work is negative twice does anyone know the likelihood that by some miracle I should hang on to hope even though it's terrible there is treatment I guess I should add my grandmother and her mother both died from respiratory failure from unspecified neuromuscular disease, so there's that as well I only remember being young and my grandmother becoming paralyzed but not her mind she knew what was happening the drs however did not back then

 

[Nikki J]

I am terribly sorry for all you have been through. There are people who turn out to have mg in spite of negative blood tests which is presumably why the single fibre emg is being done. Your doctors are being diligent and looking at every possible thing. So I think you can have a very tiny shred of hope but you also need to be prepared for confirmation this is ALS. I am glad your husband has been so resourceful and supportive. We will be here for both of you if the diagnosis is confirmed. If it is you need to be prepared for decisionslike a feeding tube pretty soon if you are having swallowing difficulties. Again I am really sorry

 

[Kerbear]

Thanks I am going to wait it out and will let all know in the coming weeks what the final answer is deep down I already know. My last emg is next week and if course I'm going to have to wait a couple weeks to see the Dr I accept the time they need but it will be a long wait for all of us, I have pain which I think is from joint damage from muscle atrophy I see that others have this I didn't have pain until the last 3-4 months, also I had not noticed the fascillations that came way after the weakness and cramping is this common. Silly me still looking for another answer, will update after my follow up and give credit to the drs at Emory university, I may not like the answer but I am not afraid anymore

 

[Kerbear]

As the day gets closer for this third emg I just can't help but wonder and I'm sorry guys hope that where I am headed is not the ALS clinic. I keep re reading my previous emg which began with my right arm as I had fallen stepping into the shower and landed on it so I was sure it was injured, it was after the ortho told me that the emg showed normal nerve conduction studies so the fall was not relative to the inability to use my right hand and shoulder that it was muscular problems and he was sending me to a neuromuscular specialist I really thought nothing of it although I kept tripping and falling, I never looked at the emg, three months later at the second emg done by the Dr not the technician this time I realized that I was not crazy and I was slowly but surely getting weaker I had not noticed anything other than weakness and inabilityvto use my right arm, so I became predominantly left handed . simply I just kept going ... I am not as aware of the ways I have compensated for my loss my family is more than well aware... Denial perhaps, I am the quenn of rose colored glasses, but I find myself in reality I finally read all of it ...thank goodness for electronic records -or not, I actually have seen 4 neurologist 3 on my own and one for ssdi..yes my primary care Dr and a social worker put me on ssdi in 2014 after I had exhausted all my long term and short term disability, had gone back to work, been fired for inability to do my job...wow that hurt...my primary care dr. Looked at me and said you know you can't work, I agreed I guess but I am always looking for ways to do my job... Anyway I see alot of people who are sure they have ALS, I am not sure matter of fact I was shocked that the neuro I saw for my disability exam stated that was his opinion, he never told me that... Also the major hospital I am now going to .. I went there when I first lost use of my right arm and the neuro at that time said to us yes there is something but it just hasn't reared its ugly head... I went there again in may 2015 because I cannot breaths well, I was told my lungs were clear that it was likely my diaphragm and to keep my appt in August with their specialist and come back if it got worse.. Still I'm thinking I have a back injury that is causing all of this.. I did see that I have mild changes to my cervical spine and lumbar spine that correlates with muscle instability ...what noone ever told me that...lastly looking back to December 2015 my lymph nodes in my left side of my neck were huge and blood tests white cells were off the charts so off to the oncologist I went ...thankfully it was not lymphoma it was however a melanoma the clear kind on my neck and in two lymph nodes all removed as the surgeon said I removed s pound of flesh, lol like the bible verse, he said I dodged a bullet and would now be checked head to toe every 3 mos, etc etc... He said it was 95% cureable and looked my husband in the eye and said this is not her biggest problem.. Let me add I was not allowed to be put asleep the traditional way the anesthesiologist talked to us and said it would be physician supervised to ventilation quick out and up because of a primary neuromuscular disease, I didn't think anything about this bexuae I was more worried about having cancer... So I guess the veil of denial has lifted, I feel like I have had and I am still experiencing miracles along the way but there is a difference between being cured and being prepared to hear something life changing, the cancer was life altering, what is happening to me is life changing... I feel as if everything I have muscled through in life has prepared me for whatever is next! I am going but I have raised three wonderful adult children and have the glory of having grandchildren ..yes I was a young mother and so is my daughter...what I once saw as a screw up I now see as a blessing ...thanks for a place to say things I cannot say to my caregicers, sadly they depend and feed off of my strength and courage because they are totally freaked out and sad!

 

[LifeEnthusiast]

Don't give up hope just yet. Wait for the next EMG which is this week right? Let us know how it goes. Stay positive. (And not to appear rude, when you give us your (hopefully positive) update, could you please put returns in between paragraphs). My vision isn't what it used to be. Sending you positive thoughts for the third EMG.

 

[Kerbear]

Well, what a big difference a university hospital and a truly amazing attending doctor makes when performing emg, ncv,mcs, single fiber emg testing and treating a patient with compassion, intelligence and competence. First I had two amazing qualified doctors performing as they said the most comprehensive testing available today, 2.5/hours to be exact. It was greuling to say the least but thankfully they went about the business of verifying or discrediting two previous emg ncsncs/ncv studies. This is what they came up with there is no nerve damage, there is no chance I have mg, and no hyperexcitability, apparently there is a transmission problem at the neuromuscular junction, some fascillations, and evidence of atrophy. We were reassured we are very close to a definite diagnosis, and the attending Dr, who actually took over the testing said we have narrowed it down to three possibilities and we would soon hear from them for a few more tests to narrow that down to one final diagnosis. Let me add he took the time to show my mother the "that's not good", and aha i have seen this before not often part of the emg. Of course I wanted it to be nothing at all but I left feeling like for the first time in a long time we are heading to a correct diagnosis, after so many failed diagnosis I know that this is blessing. I had the needle in the forhead test, wow that was intense but I was told I was very compliant and a trooper and a very mentally strong patient which are the nicest things I have been told ever by such a busy and intelligent physician. From there we went to a pain clinic as they wanted me to get started on physical therapy to learn some ways to keep me moving and improve my quality of life, that was a 3 hour visit as well and I was given some new medications to help loosen up my muscles and help with atrophy which I did not know at this point is causing me the pain I feel. I still do not know if this is ALS because they would not say what the three things are which is actually very professional in my opinion as it will be a month maybe less before I see this team of drs again I was told they need the time to prepare reports, consult with their team and possibly order and complete a few more tests. Maybe some of you can read between the lines, I know we discussed my memory and what we know of my grammas illness and it seemed very interesting to them that I am from northern Michigan with half of my family being from Canada. No idea why this information is interesting but I will be asking.

 

[Atsugi]

Please, please use short paragraphs.
I might have a response that could be helpful, but I'd rather do anything else than force my eyes to decipher that block of text. Maybe later.

 

[Kerbear]

Okay sorry I don't think I mean to say as much as I do, they did another ncs and nvs regular emg and single fiber emg the attending Dr who was obviously very qualified did all of it took 2.5 hours also single fiber emg.
He said during that I don't have mg, muscle cramps fascillations disease, or myopathy, but I do have a neuromuscular junction disorder fascillations (some) and that he would get all the reports done recommend a few more tests and then we will have our answer.
He showed my mother the emg part that was "not good" and he had seen before but not very often of course she has no idwa what she was looking at
He seemed to think my northern roots were interesting my mother is from Canada and I was born in northern Michigan also spent a good bit of time asking about my gramma and great gramma both died from respitory failure from neuromuscular disease so now we wait for them to get together and review and a couple more tests.
I have less anxiety because I know that they will figure it out I had a second appt that set up physical therapy and stuff so they are tending to my needs finally. It was worth the wait to go to a proper hospital

 

[Atsugi]

Much better writing, thanks.

One on hand, it's good that the neurologist didn't scream out "ALS!" when he did the EMG. But you did not say that he ruled out ALS, either. Did your EMG show "denervation"?

 

[Kerbear]

Okay sorry I don't think I mean to say as much as I do, they did another ncs and nvs regular emg and single fiber emg the attending Dr who was obviously very qualified did all of it took 2.5 hours also single fiber emg.
He said during that I don't have mg, muscle cramps fascillations disease, or myopathy, but I do have a neuromuscular junction disorder fascillations (some) and that he would get all the reports done recommend a few more tests and then we will have our answer.
He showed my mother the emg part that was "not good" and he had seen before but not very often of course she has no idwa what she was looking at
He seemed to think my northern roots were interesting my mother is from Canada and I was born in northern Michigan also spent a good bit of time asking about my gramma and great gramma both died from respitory failure from neuromuscular disease so now we wait for them to get together and review and a couple more tests.
I have less anxiety because I know that they will figure it out I had a second appt that set up physical therapy and stuff so they are tending to my needs finally. It was worth the wait to go to a proper hospital

 

[Kerbear]

Yes he said denervation some fascillations, he also said that he was the attending for the neurophysiology team and that my Dr would receive his reports and suggestions and then I would hear from her, basically he only actually said its 100% not mg from the needle in the forhead test neg blood work he aid the abnomality is seen on the single fiber emg and the emg I believe he knows what it is but professionally he was not my Dr. So he would not tell me more himself makes sense.
He also told us that I had the most comprehensive testing available he was very very good at what he does but would be overstepping if he named it himself and that my Dr was superb and thorough, the only mention he made of ALS is that it is a diagnosis based on examination, emg and ruling out all other possibilities.

 

[Atsugi]

Sorry to hear you're in limbo without an official diagnosis.
When you see your doctor for the results, bring a notebook and write down what he says. It's easy to forget all the little technical words that might make a big difference. Good luck.

 

[Kerbear]

Thanks we will do that, I have found that when it comes to these appointments 1- I down play my problems 2- my husband and mother are just as confused and scared as me and each hear different details 3- I find reasons why this cannot be happening.

This is what confuses me or makes it hard to compute what is happening when I first went I had high hopes that it was muscle cramp fascillations syndrome or one of the 21 blood tests that were ordered, one by one they came back negative. The ncs, emg 3rd in a year, and single fiber emg brought on hope again for an anseer. What we got was a rule out of mg, myopathy, and hyperexcitability, and a promise that once they reviewed every detail, reported to my Dr and made a recommendation for "a few more" tests we would get a diagnosis. Okay great i feel good about that for gods sake I do just want to know waiting is quite unbearable for all concerned.

What I don't get is why my reflexes are so fascinating, why I have so many limitations but all in all I am pretty active, have I really just adapted to my limitations so well after three years? I don't know what my question is in all of this but how could I be doing so well after three years? After reading other posts it seems impossible for me to have ALS, or am ibin another whole level of denial, is that normal?

Also it's only been in the past two months that I find my family staring at me while I eat, talk and breathe. They also seem to be telling me when I need to sit and relax its like I have now decided to push the limits of my abilities. Has anyone else done this or seen someone do this?

I also find myself a little sensitive about people who complain about average things, I am a very nice person but sarcastic I used to be funny now it seems that i am a bit insensitive which is not at all like me. Did anyone else just get to a point while waiting for final diagnosis when they just knew whatbotvis? There years ago my primary care Dr told me it was stress, I was over doing it such a go getter you have worn yourself out and I looked him in the eye and said its going to be rare and nothing can be done about it. What if I was right then and I am still right now.?

 

[Atsugi]

You're nervous and stressed. A shrink might be a good idea.

 

[lgelb]

The fact that they are interested in family hx, what you've mentioned of it and the NMJ being the locus of the dysfunction without evidence of MG suggests the possibility of a rare genetic disorder, e.g. a congenital myasthenia. That is just a guess, however.

It sounds like you are in good hands so I would live your life as best you can, stay off the health net until you know more, and when you do, go from there. We have many more ways to address symptoms than in your grandmother's day, so you're in the best possible situation to live as long and well as possible.

Best,
Laurie