ALS/mg/trying to find hope

[Kerbear]

Why thank you so much...... I never thought of that, oh wait yes I did I see a counselor, maybe now your reply is that I need a better shrink. I had no idea that it was not okay to speak of my feelings on this site .. I did not see that in the rules, I will tell you this I have been told I am not crazy, I have been told that I am a very compliant, intelligent and strong patient, and I mean strong mentally! I also know that as each possibility of something else is ruled out it only leaves me with some serious scenarios, and I also know that one month ago I could climb my stairs to go to bed and now I sleep in a guest room.

If what I say bothers you don't read it or ban me or whatever is appropriate, I will wait to post anything else until I know for sure what the diagnosed is. By the way I have never questioned a dr. I have however gone from my gp, to an orthopedic, to a neurologist, to a neuromuscular Dr, to a large hospital that has the best team I could find... I don't think all of these drs would keep referring me onward if all I needed was a good shrink, the worst and I mean very worst part of this was the first year and a half when I was treated like a crazy person by drs and my family...boy do they feel bad now! Until then I will speak with others as I cannot tolerate anyone else referring to my mental health it checks out very well.

 

[Kerbear]

Start physical therapy today order states 3x a week for 12 weeks has motor neuron disease work on core stabilization range of motion myofascial trigger points and strengthening observation and implementation of occupational therapy for recommendations. So I will go still not sure what or why also discontinued triliptal for muscle cramp fascillations syndrome np for Dr. Sent message that it had been ruled out along with mg, and myotonia. Limbo still!

 

[Atsugi]

Why thank you so much...... I never thought of that, oh wait yes I did I see a counselor, maybe now your reply is that I need a better shrink. I had no idea that it was not okay to speak of my feelings on this site .. I did not see that in the rules, I will tell you this I have been told I am not crazy, I have been told that I am a very compliant, intelligent and strong patient, and I mean strong mentally! I also know that as each possibility of something else is ruled out it only leaves me with some serious scenarios, and I also know that one month ago I could climb my stairs to go to bed and now I sleep in a guest room.

If what I say bothers you don't read it or ban me or whatever is appropriate, I will wait to post anything else until I know for sure what the diagnosed is. By the way I have never questioned a dr. I have however gone from my gp, to an orthopedic, to a neurologist, to a neuromuscular Dr, to a large hospital that has the best team I could find... I don't think all of these drs would keep referring me onward if all I needed was a good shrink, the worst and I mean very worst part of this was the first year and a half when I was treated like a crazy person by drs and my family...boy do they feel bad now! Until then I will speak with others as I cannot tolerate anyone else referring to my mental health it checks out very well.

Perhaps you misunderstood me. When I suggested seeing a shrink, that was purely a recommendation, not a rebuke. (I see a shrink, myself.) I suggested a psychiatrist (not a therapist or a psychologist) because it seems to me you stress and anxiety may benefit from medication, and counselors can't prescribe that.


Kerbear, I do read everything you write and I take it seriously. It does not offend me. It is certainly OK to share your feelings.

 

[Kerbear]

So sorry for the mini rant, some days are just plain better than others. At one point last year actually I was taking ativan and my pc also put me on a 10mg fentanyl patch, I was over medicated and stopped all meds, I feel as if I need to start taking the anxiety medication again. I have set up an appointment for that and yes it bothers me to have to take something to keep me balanced.

I went to my first physical therapy which was alot of paperwork and another neuro exam, also range of motion testing and measuring of muscles. The therapist did tell me that I have mild facet joint arthritis in the c5-c7 and mild spondylosis, he said some mild changes in the lower lumbar also, sadly I got excited and said so that's what is causing all my muscle problems right? And the dreaded no it is from lack of support from the muscles, darn it. He told me he would have a plan to help with flexibility and strength but has to calculate fatigability?

My point in this post is that he referred to my motor neuron disease three times during the appointment, I realize that all of my information is in front of the people treating me but my pmain neuromuscular doctor has not said those words to me as of yet, keeping in mind my third emg was just last week and my next appt with her is not until October 6th. I have now seen it in print, heard it from the pain clinic and physical therapist, I do realize mnd is a general term, I think... What other tests is my Dr referring to ..my file says ruled out myopathy, mg, and bcfs. Does anyone know what other tests I might have seems like I have had them all at least once?

 

[Kerbear]

Finished the last of three recommended tests, pet scan, another emg, and a ct scan. I imagine we are still looking for completeness of the file I have gone over my copies of tests over the last 3 years, spinal tap, mris ct scans probably gallons of blood, 4 emgs, and x rays galore. I found copies of my medical records that were provided for my disability hearing and in there was the report from the ssdi neurologist I went to, his opinion in 2013 was motor neuron disease and recommended my ssdi be approved , wow, this is becoming quite an adventure ... My appointment to go over everything is only 2.5 weeks from today.

I have not been health webbing I actually never did pay much attention to ALS seems impossible ... I have however taken advice that I have seen you kindly give others and I am making th most of each and every day, I am not claiming any of this as my illness uuntil these very qualified drs look me in the eye and tell me what it is and how they decided this.. I have had too many other opinions and have been let down,

I remember the first time after I was air lifted for suspected stroke ..how blessed I felt to not have had a stroke but maybe ms... I remember when I had the spinal tap and mri's for ms to find out from the ms center that is wasn't ms...felt relief...I then remember having to use a Cain and they thought autoimmune .... I never ever thought that blessed day would lead to anything like this.

I have mourned the fact that I was estranged from my family so I did not know my gramma died paralyzed in bed but cognizent of what was happening until last year.

Mostly I am scared, I am angry that I had needles stuck in my head and that wasnt it, I really don't know what is left, I do know my drs are working diligently, mostly I want to thank anyone who is suffering who has and does read my crazy little..okay long posts

I hope you are all as well as can be expected, and know that I respect all of you! Won't be posting again until I hear what "it" is.

I do not wish to be I'll, i do not wish to have neuro disease, I do not wish to be a burden on my loved ones, I do not wish to be disrespected. I am still hoping for another answer..

 

[Atsugi]

Kerbear, I know it is both frustrating to be in limbo and also scary to think it might be ALS. But there are other MNDs, too, not just ALS, not fatal. Three years is a long time awaiting a definitive diagnosis, but not unheard of. I wish you luck on your next appointment. --Mike

 

[Green Queen]

Kerbear, I get your frustration. I have just had my official diagnosis on Friday after nearly four years.
Hang in there.
God bless, Janelle x

 

[Kerbear]

Can anyone tell me what muscle membrane instability means I wish I had paid more attention in biology, and I see myopathy linked alot to this term but myopathy is out 100% ..

I ask because I had a recent run in with e coli and of course thought the kidney malfunction was related to the muscular problems which made me sort of hopeful that I had uncovered a new clue to an alternate diagnosis. I had a message from my Dr that antibiotics were being called in and in that she said I could stop triliptal as it is not necessary although may help with cramping but with muscle membrane instability and no myopathy I could discontinue.

 

[Nikki J]

Sounds like they are talking about findings on the EMG. My initial abnormal EMG had that interpretation for muscles adjoining where they found the changes that were consistent with ALS. My understanding was that taken alone they were non specific and could represent very early disease but could also be something that could resolve by themselves or be something else

 

[Kerbear]

Thank you the recent emg was so thorough and the drs who did were obviously very good at it, as it is all that they do for the neuromuscular center I go to. I had not seen those words in any of the other emgs, fascillations fibriltions crds I had seen and the difference between first one Dec 14 just my arms had said suspect primary muscle disease, second in April 15 had the mention of myotonia so I assume the third was to verify or not what the other two reported, that second emg was of leg arm neck backside and my hands just the muscle between pointer and thumb, it reported fascillations crds reduced recruitment and the summary included suspicion of myopathy. Looks like I will be getting a much clearer picture when i go on the 19th, I had not or do not recall seeing the words muscle membrane instability on either previous report of course I thought it was "the answer" sounds like more of a description.

Thank you for clearing that up, the 19th does not seem so far aaway anymore actually seems to be closing in fast, its crazy how all this plays with the mind.

Thought I had dismissed the every single thing that happens along the way has to do with "it" demon, but here I was sure a kidney infection had anything other than difficulty cleaning myself to do with my illness, so no not directly related to what I have but a result of something I cant do without some help...ugghhh.

Wondering if this appointment is the one I finally get an answer or better understanding or orders for more tests, hopefully all of the above, well minus the testing but at this point the tests don't phase me just the waiting.

On a side note was talking to someone who had been to a third neuro for back pain numbness on legs etc who had an MRI the Dr said nothing on the mri and offered to do an emg ncs and I said yeah do it, it will show nerve problems or back problems and this person said are you crazy I had one of those six years ago I would rather die than have another emg... I was speechless, I mean I still am. I guess I said then it must not be that bad, I mean really the emg's are nothing compared to what I go through daily I guess the first one was weird or new, my husband said well you are much tougher than most people.. Not sure that is a compliment bit I will take it as one

Have a great week all, enjoy fall

 

[Kerbear]

It's been a week since I went to my follow up to go over my emg results, the Dr said the emg shows denervation of all muscles tested and of course did the neuro testing again I assume that will go on at every visit. Her observation and the testing indicate. Mnd I did not know there are a few other less aggressive types of mnd. I am having a muscle biopsy she said open muscle so the neurosurgeon will do it and I am a bit scared of it, but the rational side of me says get over it and get it done.

I don't know how common a muscle biopsy is in this circumstance but my family just tells me to let the Dr. Do her job I trust her and she is thorough.

One additional comment I read the posts under do I have ALS,, and stay away from the other areas because I can tell anyone who thinks they have ALS it does only harm to stay on the computer googling and reading information. I also think it's odd that people come on her and post based on what they diagnose themselves as having, I say this in kindness.

I personally had ALS or mnd mentioned to me three times before I even looked ALS up. Maybe it's strong denial in my case but until my dr. Looks me in the eye and says 100% this is what it is I continue to hope for an alternative diagnosis

I will update after my test and follow up with my Dr. I appreciate all of your time and effort at reading my posts

I do actually have a question, how many ppl had to gobto the muscle biopsy to confirm their diagnosis, the doc told me its not always necessary and each case is different.

 

[lgelb]

Most do not need a muscle bx since their EMG/NC testing clearly suggests nerve, not muscle dz. Your case is obviously different. But some people here have had the bx.

 

[LifeEnthusiast]

I had a muscle biopsy done in January. I'm not entirely sure it was necessary. I was living in a country that has little experience with MNDs of any type. It is also a country not used to adoption. To them, it was weird to have no family medical history. And the doctor/patient relationship is much closer than you would imagine in other countries. My understanding from them was they wanted to leave no stone left unturned -- just in case.

Mine was also an open biopsy. It wasn't too bad. The first day it was sore due to the location. But honestly, it was no bother. I had the plastic stitches out two weeks later. In March, I had a cervical two-level discectomy, fusion and cage, in the hopes that it would be the cause. No luck.

Like in life, I have never done anything in the usual manner. Because my symptoms came on at the exact same time as another disease, it confused the diagnosis and led me down various paths.

I too was given a diagnosis numerous times, but kept hoping it was something else -- particularly since I was living in a country without an ALS/MND specialist.

I wish you all the best on the biopsy. Please let us know how it went and the results.

All the best, Cee

 

[Kerbear]

A sincere thank you to each and every one of you who have taken the time and made the effort to give me support and information. It really means alot to me I have been spending more time in meditation and prayer over the last several weeks and also signed up for some talk therapy I have come to realize that my loved ones will do anything to help and care for me but its silly to think they can manage the emotional feelings I have at this point, seems a bit unfair to expect anyone who does not have sick muscles to understand the grieving of loosing abilities.

I refuse to doubt anyone who has a health problem but I have to say that anyone who has twitching as a first symptom should see a neurologist but not borrow trouble from the internet. I did not even think much about twitching all this time because it came long after weakness, I am also of the opinion that what goes on with mnd is very hard to describe. There is no loss of sensation pain or ability to do things sometimes once it's gone its gone, as in when you can no longer turn a car ignition switch.

Over the past couple years I have had mnd mentioned but I never googled it or looked it up as I knew what it was and how it looks my grandmother had it. It was a year ago when I had a malenoma removed and the anesthesiologist would not let me be ventilated because of the info on my health record about primary muscle disease that I even began to think I had a big problem. Still I thought it would be something treatable, and as of today I still have on my rose colored glasses, until this muscle biopsy is done and results are in I still am not convinced that I have a fatal disease.

To all of you who have a diagnosis or care for a patient with mnd I hold you in my daily prayers. I am also setting aside some money each month to donate to finding a cure. I have learned so much and found alot of hope and peace from this site. I hope noone is offended by me saying any of this I will let the site know what the muscle biopsy finds and I am very thankful for all of your patience and insight

 

[Kerbear]

Good news after a review of all my records it seems I won't be having a biopsy... Another emg has been scheduled for Nov 18... That's 4 in one year, every three months hmmmmm...but this is only the second one done at Emory.. I asked the nurse if it was in hopes there would be a different outcome, I mean I am always in hopes that it will be normal. I'm starting to dislike the emg, but I bet I would like the biopsy less.

I am in so position to give advice, however, I would give anything to have a clean emg or neuro exam. Shoot I would like to be able to comb my own hair at this point.