Neuromuscular evaluation this Monday, really concerned

[CelineEs]

I HAve came back here. I was told not to post anymore. But things are sadly not improved for me. I wish I could get at least some advice.I feel some words. I don’t know.. I feel completely lost... My neurologist since the beginning didn’t really contemplate MND, though was MS but that have been ruled out, 4 months since my symptoms began, so many tests done and negative results, she even thought I was having FND. She kept telling me I didn’t have clinical weakness.

She Performed and EMG February 1. I went back to see her on March 29, I told her I had lost 15 pounds, my right side weakness was getting worse, she only did a very basic exam, still strong, but again, unilateral briks reflex, she really didn’t take it seriously and I felt so frustrated... But I kept getting worse and worse, now I can’t drive, I don’t leave the house, cant barely walk, right arm, hand, leg and foot really weak, keep loosing weight.. and I have started to feel weakness in my left side too, pain it’s unbearable all over, internal tremors.

I have never felt this way before. I know my body and I knew something was wrong since I first noticed, back in January, the strange clumsiness in my hand and a few days later same thing in my right leg, that never went away… My life have been miserable since then.

So I called the neurologist again last week really concerned already . She was kind and immediately talked to the senior Neuromuscular specialist ( Kaiser Permanente LA) who was willing to open up a sooner consultation for me. This appointment will be this coming Monday. I am very scared.. . Any advices from you, beautiful people, would be highly appreciated.

Thank you very, very much,

Celine.

 

[Nikki J]

Organize your questions ( write them down). Make a concise timeline ( bullet points are usually good) with specific example of what you can’t do. Ask what is wrong? Not is this als? Bring someone with you to take notes.
read the sticky on getting a diagnosis at the top of this subforum

 

[CelineEs]

Nikki,

How great full I am for your advices. My mom is coming with me. Poor he. she is suffering so much but she is really strong. Im supposed to take care her of her not the other way around. I’m very sad… I don’t really know what to expect from that evaluation. How come having a normal EMG 3 months ago to be exact, symptoms have progressed so fast?? if not ALS what could possibly be causing all these? I can still walk but really slow and my back hurts so much when I do , my both arms feel really heavy and shaky it’s getting more difficult to type and text, so many debilitating issues, I don’t know what to think.…what to hope or not … It is a real nightmare…

thank you so much again for taking the time to reply.

Many blessings for you,

Celine.

 

[Nikki J]

The main question you should ask the doctor ( not us) is given all my test results and the symptoms I have what is wrong? If they don’t know yet ask what is in the differential and how do we narrow it down?

please report back AFTER you have an answer. Good luck

 

[CelineEs]

Hi Nikki,

I’m reporting back after the Neuromuscular visit but honestly, I have more questions than Answers. And I believe things have gotten to a point where every physician I see, will keep telling me it’s all FND.

Giving the deterioration and the constant progressing symptoms my body it’s experiencing, how come they won’t believe me. The neuromuscular, just got into the room and before giving me even the change to talk she just said she had reviewed my case with my regular neuro and everything looked good. She said that she has 30 years of experience treating ALS patients and just with looking at the patient ( even without doing the clinical examination) she would know it. I think she was a little arrogant and rude with saying that.

Anyways I was expecting a very detailed clinical examination from her, but was very basic ( everything looked normal) When she gave me the opportunity to talk I mentioned with specific samples indeed, all I’ve going through since it all started iDEC-JAN . My life changed to the point I had to stopped working, driving ,in others word, my life it’s not the same anymore, fatigue is constant, right side weakness, heaviness and clumsiness increasing, left side started feeling the same way now, the back and neck pain it’s unbearable ,constant fasciculactions, joints paints , shortness of breath,

I have lost more than 20 pounds and I’m really petite ( 5feet) I have difficulty swallowing, regurgitation and Neck and chest feels tight, I get also fatigue when I talk, but voice has not changed. I had an nasal endoscopy like a month ago and was diagnosed with globus and VCD. Do all these symptoms sound like a fast progression? How and when will I possibly know for sure if this is really ALS or something else? I wish all the symptoms would go away but the don’t, just get worse. I desperately asked her to repeat the EMG for me and first said not, but then changed her mind and agreed to do it (will attached the result) it came back normal… I was completely surprised, but did it so quick and refused to test bulbar area, I also asked her I wanted to get a pulmonary functional test and swallowing test but refused to order these as well.

so I feel like in a limbo situation right know. What else should I do, get a second opinion? Go back to see my regular neurologist? How will I be really sure that all these are caused due to FND or ALS? I feel lost.

Advices as always ,will be highly appreciated.

Thank you so much,

Celine.

 

[Nikki J]

Most doctors don’t come right out and say it but they really do know a lot from just looking at you.
so you have an emg saying no als, a regular neurologist saying no and a neuromuscular specialist saying no. The neurologist said fnd. Did the neuromuscular say it too?

fnd is a real disorder. It doesn’t mean you are crazy. It has ben described as asoftware issue in the brain. Infinitely better than a hardware issue like ms or als because it is treatable. With hard work and help from the right doctor and pt you can get better

i have long been interested in fnd ( and wanted desperately to have it) search this subforum for posts by me about it and google David Perez MD Mgh he runs an fnd clinic. Somewhere there is video of a woman who was in a wheelchair from fnd. She got better with his help. If fnd is your real diagnosis you are very lucky

 

[CelineEs]

Thank you so much for your reply . I will look it up !! And the same as you, I’m desperately wishing that could be the final diagnosis for me.
I feel so miserable right now for not being able to function as I used too. Being all day in bed it’s driving me nuts. I’m getting a psychiatric consultation in 2 weeks. I hope that could help at least in some way.
I have also read a little about FND, hoping that it’s really what’s been happening to me. However I think symptoms come and go with that syndrome, my symptoms do not go away, they are persistent and increasing. The neoromuscular said not come back to her. Yes she said it too.
5 months have past and as I said, don’t get any better. Should I seek a third opinion and repeat EMG in a couple of months maybe? I still want to get somehow a swollen test and pulmonary function. Walking it’s getting harder and harder my right leg is constantly shaking, and right now my wrists are getting fatigued while I’m typing. If this would have been ALS the EMG wouldn’t have been normal, correct ? This is my second EMG, as I mention before, the first one was Feb 1. Would that be reassuringly enough to rule out MND?


Thank you so much for your patience NIkki.

 

[lgelb]

Second that. Yes, you can be reassured as to ALS. And that is essential to properly considering/addressing FND.

Take this EMG [that PALS here would do a great deal to have in front of them] and the informed opinions that you have received and run with them, toward better health.

 

[CelineEs]

Hi Lauri and Nikki,

Please, I don’t mean to bother with me coming back here, just had some updates wanted to share. I wish I would not. I wish I can just continue with my life and be healthy again…
I was able to meet with a FND specialist and also have a psychological consultation. Both of them, do not think my symptoms are related to FND. So many symptoms going on that do not wax and wane, my symptoms are permanent, progressive and debilitating . I know my body and I just wish I could be wrong.
I emailed the neuromuscular specialist who saw me last week, she just replied nothing neurological it’s going on with me, I also emailed my PCP she said there is nothing she can do about it. And finally got in contact with my regular neuro seeking for new advices, no answers on her part. I know you guys can’t diagnosis me. That’s not the reason why I keep coming back. It Is just that I feel lost. I think I’m being dismissed by the doctors and my symptoms, for God’s sake are real and debilitating. Im not making this up. Ijust cannot understand how do I get a clear EMG when I can barely stand on my own feet, when my hands both now keep getting clumsy and fatigue, when I keep having difficulty to breathe mostly when I lying down, eating has become a challenge... and nobody is able to make a diagnose after so, so many tests they have done on me, some others I have requested and they have declined to do.What are they waiting for ?? What else is left for me to do, just wait here and die?
Should I just seek a third opinion outside Kaiser Permanente ? I’m so upset !!!

As always any advice will be greatly appreciated.

thanks a lot,

Celine.

 

[Nikki J]

I am sorry you must be very frustrated. We never said your symptoms are not real. They don’t appear to be ALS and you have a neurologist and a neuromuscular neurologist saying that. FND symptoms are absolutely real. You do have an fnd specialist saying no and a psychologist ( who is not an md) if you do seek another opinion ( which I would probably do myself) go with a what is wrong question. If they concur not neurological ask them for a suggestion what next

 

[CelineEs]

Thank you so much Nikki for your kind reply and advice.

Let me ask your opinion about something. I was reading about hormones changes in women and that could be possibly somehow related to trigger the desease. A few years ago,I was having really painful menstrual periods and my doctor suggested to try a depo-provera shots every 3 months. I agreed and in a matter of months, no more periods, after a year or so I decided to stop getting those shots since I was advised by another doctor it could cause osteoporosis And just realized now that maybe getting that vaccine , was a huge mistake I made. I didn’t realized the harm I was causing to my self. and now I’m blaming my self. Could this be posible the reason I might be developing MND? If that would be the case… I feel horribly bad about it.
I’m desperately frustrated indeed. I know I cannot diagnosis my self, but giving my symptoms I keep with the fear of developing the terrible desease . I’m honestly terrified . And I will absolutely look for a third opinion.

Thank you so much,

Celine.

 

[Clearwater AL]

Celine, you gave a "Like" to Igelb what posted to you above.

Now you're back still leaning that you've may have some MND or ALS.

Thinking you're just going to lay there and die is Health Anxiety which
you really need help with very soon. Hard to say but... the forum can't help
you with your feeling lost until you get one of the doctors to work with you.

Best advice... stop reading about ALS, this forum and searching old
threads. You've had a clean EMG and other tests too with two FND
specialists saying no to that also.

Not much more anyone here can add.

I really hope one of your doctors can help you. Start with your PCP, telling
him/her anxiety of all this is really burdening you.

 

[Nikki J]

There is no evidence at all that depo provera a risk factor for ALS. The theory that estrogen is protective is not at all proven. If it were female genetic carriers would be prescribed hrt at menopause- they are not. I have never heard a whisper of this being suggested

I don’t think we can do anything more for you at this time. Once again please no more posts until you have an answer Do please let us know when you get a diagnosis of something. Good luck

 

[CelineEs]

Hi Alll,

I just wanted to share the result of my final diagnosis.

Have been 6 months of overwhelming symptoms, symptoms that do not seem to disappear, however, I’m hopeful I will have the strength to get trough this and find some peace and relief after all. But first I wanted to express my deepest gratitude to all and each of you guys. Thank you for your kindness, for your patience and for dedicating the time to always respond with the best of the advices,wisdom and acknowledgement.I am absolutely greatful for having found this forum, and you guys will be always in my prayers.

Well,I’ll get to the point,after seeing a Neurophysiologist, a Neuropsychiatrist a few days ago and a second opinion from another Neuromuscular specialist today, who also performed a new EMG, which he told me results were excellent and completely normal. ( I can post it later if you guys wish) So, ALS Has been definitely ruled out!! with total reassurance, he said to me “ let’s put it to sleep” I was soooo grateful to hear such a fantastic news that I cried like a baby in front of him, but those were tears of happiness.. So finally they all agreed, and reconfirmed the oficial diagnosis is indeed FND.

THANKS AGAIN ONE MORE TIME FOR EVERYTHING,

Celine.

 

[lgelb]

Thank you for the update; it does help others.

Do block this site and any others that are related, and live the life that others here cannot. Helping others who are less fortunate and doubling down on your passions can be keys to leaving your fears behind, as you show yourself what you can contribute and achieve as someone with FND. Not every day will be what you want it to be, but your life can be good overall. As Nikki has noted, the right doc and PT can really help, even if there are some false starts.

Don't just be "hopeful" about moving on. Commit to yourself that this is what you can and will do. And text, voice, or video counseling is available 24/7, using national telehealth portals. or one of your local providers.

It is hard work to move past an obsession, but it's well worth it, and I know that you will succeed in this.

Best,
Laurie