[mj]

Hi. I am a 51 year old female who developed a chronic and persistent cough in Dec 2013 after a bout with the flu.Since then, I have had a multitude of negative investigations and consults. In July of 2014, I started dropping things after a prolonged period of carrying (like a water bottle during a walk), pain in my elbow and forearm and I noted a tingling kind of sensation near my "sit bones". The cough persisted and became so bad that I could no longer carry on a conversation. I was given "special projects" at work to accommodate in hopes of improvement. I am a RN, working in a case manager role in the mental health field. This requires much conversation. By Dec, 2014, it was suggested I take the month off to rest my voice, which I did. I returned for 2 days in Jan and was encouraged from there to apply for LTD as I was showing no improvement. I continued with the consults and investigations. In March, I developed a slightly drooping eyelid. I was referred to Neurology. Since that time, I experience swelling in my hands and rt arm with fatigue or much use. I have discomfort in my neck, ribcage arms and both legs fatigue significantly with much use. My eye continues to droop. I am not able to do much of what I used to enjoy (hiking, biking, running or even long walks). I have difficulty cleaning my home without several breaks. I cannot tolerate massage tx as I stiffen as oppose to relax. If I push myself, I not only become fatigued, but that eve or the next day is quite miserable for me. I cannot garden for more than 10-15 minutes, etc. I have no stamina at all. I used to have several really good days, where I would wonder if maybe there was really nothing wrong with me (until I felt unwell again), but now am fortunate to have 24 hours without probs. I was denied LTD and have appealed as things are progressing. I saw Neuro in June and was tested for Myasthenia Gravis. All labs are negative and EMG studies were normal. MY GP states that there is a 20% chance of negative results while still having the disease and suggested I start a trial of Mestinon. I am wondering if anyone else has experienced this or if it is likely that I do not have MG? All symptoms lead that way, but no clinical findings confirm. Neuro will see me again in 6 months as I did have questionable lesions on my brain MRI- MS ruled out. I am becoming quite concerned re my health and now my income..input appreciated.

[Diandra]

Originally Posted by mj

Hi. I am a 51 year old female who developed a chronic and persistent cough in Dec 2013 after a bout with the flu.Since then, I have had a multitude of negative investigations and consults. In July of 2014, I started dropping things after a prolonged period of carrying (like a water bottle during a walk), pain in my elbow and forearm and I noted a tingling kind of sensation near my "sit bones". The cough persisted and became so bad that I could no longer carry on a conversation. I was given "special projects" at work to accommodate in hopes of improvement. I am a RN, working in a case manager role in the mental health field. This requires much conversation. By Dec, 2014, it was suggested I take the month off to rest my voice, which I did. I returned for 2 days in Jan and was encouraged from there to apply for LTD as I was showing no improvement. I continued with the consults and investigations. In March, I developed a slightly drooping eyelid. I was referred to Neurology. Since that time, I experience swelling in my hands and rt arm with fatigue or much use. I have discomfort in my neck, ribcage arms and both legs fatigue significantly with much use. My eye continues to droop. I am not able to do much of what I used to enjoy (hiking, biking, running or even long walks). I have difficulty cleaning my home without several breaks. I cannot tolerate massage tx as I stiffen as oppose to relax. If I push myself, I not only become fatigued, but that eve or the next day is quite miserable for me. I cannot garden for more than 10-15 minutes, etc. I have no stamina at all. I used to have several really good days, where I would wonder if maybe there was really nothing wrong with me (until I felt unwell again), but now am fortunate to have 24 hours without probs. I was denied LTD and have appealed as things are progressing. I saw Neuro in June and was tested for Myasthenia Gravis. All labs are negative and EMG studies were normal. MY GP states that there is a 20% chance of negative results while still having the disease and suggested I start a trial of Mestinon. I am wondering if anyone else has experienced this or if it is likely that I do not have MG? All symptoms lead that way, but no clinical findings confirm. Neuro will see me again in 6 months as I did have questionable lesions on my brain MRI- MS ruled out. I am becoming quite concerned re my health and now my income..input appreciated.

Hi MJ,
I don't know what you have but when you said all this appeared after "a bout with the flu", a similar thing happened to me.

I thought it was the flu and so did my doctor. Turned out, it was never the flu, it was Lyme Disease and Erlichia but I had no idea and neither did my doctors. It took close to 4 yrs to figure it out and by then, lifelong damage had been done.

Here is a paper written by a doctor who treated Lyme Disease and related tick born diseases for over 35 yrs in New York. Tick born diseases are greatly misunderstood not only by doctors but the general public. The tests for LD and related diseases are poor.Many docs will give a blood test, state it is negative and that is the end of it. Then the poor patient goes through a medical odyssey trying to find answers. Often told they have fibromyalgia, MS or are imagining it or are depressed. Tick born diseases are VERY prevalent. Many folks NEVER see a red bulls eye rash as many doctors insist on. Many symptoms start out mild and progress to severe after many yrs. At a social gathering in NY I met a psychiatrist who said psychiatric hospitals and nursing homes are filled with people who actually have a tick born illness that was never dx'ed.

Here is the link. I think the symptom checklist is on page 9 or so.

http://www.lymenet.org/BurrGuide200810.pdf

I am sorry for what you are enduring and I hope you find a solution. I am not saying you have a tick born illness but it is a place to look. I did not figure it out until someone gave me this very same symptom checklist. Last I knew, there were over 300 strains of Lyme bacteria and that is why the symptoms are so varied, it depends which strain you get.

Best of Luck,
Diandra

[Lara]

Originally Posted by mj

I saw Neuro in June and was tested for Myasthenia Gravis. All labs are negative and EMG studies were normal. MY GP states that there is a 20% chance of negative results while still having the disease and suggested I start a trial of Mestinon. I am wondering if anyone else has experienced this or if it is likely that I do not have MG? All symptoms lead that way, but no clinical findings confirm. Neuro will see me again in 6 months as I did have questionable lesions on my brain MRI- MS ruled out. I am becoming quite concerned re my health and now my income..input appreciated.

Hello mj,

Welcome to the NeuroTalk Support Groups.

You may like to post over on the
Myasthenia Gravis Forum

The members there might have some information that can help you regarding the negative results, the Mestinon and your current health situation.

I hope you find some answers soon.
take care.

[DejaVu]

Hi mj,

Welcome to NeuroTalk!

I am very sorry for all you have been enduring. I hope you will find support and information here which will help you in your quest to feel better.

Please make yourself home here at any forum which interests you.

We have many forums here, including fun forums where we share music, movies, pet stories, wildlife photos, jokes, word games and much more!
These forums provide great distractions and help us all to get to know one another a bit more.

I hope to see you around the forums!

To Our Healing,
DejaVu

[Darlene]

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[bluesfan]

Hi mj

Welcome to NT. You mentioned you had had the flu - just wondering if you were give any medications during that time that you may have reacted to? Also did you have a flu vaccine prior to getting the flu? (or any other time) The vaccine does not always prevent influenza and in some people it can cause them to actually get flu.

A serious infection can trigger an auto-immune response in the body. The neuropathy could be a secondary effect from an auto-immune condition. From what you wrote I'm guessing they tested for several auto-immune conditions before settling on MG. Your symptoms sound fairly typical of Chronic Fatigue/ME but as that can also mimic other conditions it's usually diagnosed by exclusion.

All the best for finding answers and I hope your LTD appeal is successful. Please let us know how you're getting on.