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April E

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First of all, thank you to everyone taking the time to read this. I appreciate and respect your knowledge and look forward to your feedback.

I'm not sure where to start. So I will pick last summer, August I believe it was. I got on my bike and couldn't ride for more than a couple of blocks. My legs turned to rubber bands and I had to dismount and wobbily push the bike home. I asked my husband to check it for me, as I assumed there was a low tire or stuck break. He didn't find much wrong, aired up the tire a bit, tinkered with the break...I got back on and was excited for the first block, and then the same thing happened. This was such a profoundly disturbing sensation that I haven't gotten on my bike since. Shortly after that, I started getting cramping in my right foot any time I tried to move my toes up or down. I have also been getting strange, intensely painful cramps up under my chin if I yawn too forcefully, and some mild cramping in my right hand and left ribcage. In the last few months I've developed twitching. It is mostly in my lower legs from calf to ankle, but also occasionally in left thigh and left buttock. Sometimes the left ribcage twitches as do both of my elbows. This twitching never stops. Then, what really got my attention and sent me in a blind panic to my PCP was when I noticed some atrophy between the thumb and forefinger of my right hand. I can also see tiny twitches in the atrophied area which I cannot feel. I have lost 40 pounds since February, but I was trying to adopt a healthier diet during that time, and now, this recent onset of anxiety has pretty much killed my appetite.

The PCP referred me to a Neurologist. I had a CMP which was all normal. I've had a MRI of the brain which was negative, and EMGs of both arms, both legs, and under my chin. I received a phone call from the nurse who kindly informed me that my upper EMGs showed mild carpal tunnel syndrome on the right side and there was nothing to indicate ALS. A week later I received a call about the lower EMGs, (they were done a week apart) simply stating they were normal. My follow up with the neurologist is Monday.

During my initial appointment, before the tests, the neurologist made a comment along the lines of, "unfortunately, even if the EMGs are negative, we can't be sure".

So, while I want to be reassured that all is well, I'm very worried since he did say that. Just FYI, I was recently diagnosed with Hashimoto's antibodies, but my TSH and free T-4 are both normal. I have an appointment with an endocrinologist next Thursday. I found out in 2016 that I had a positive Lyme titer in 2014 while in the ER for a very slow, irregular heart beat. I was hospitalized overnight and discharged before the results were available, I don't recall knowing they were testing me for Lyme, and somehow I was never notified. I did have a history of a tick and a rash that in my ignorance, I ignored at the time. So, in 2016 my PCP gave me a10 day course of Doxycycline, which I've since learned was not nearly enough, considering the amount of time that had elapsed. My PCP referred me to an Infectious Disease doctor at the same time as he referred me to the neurologist, but he hasn't returned my calls.

Do you have any recommendations as to what I should ask the neurologist on Monday? I work third shift and will be going directly from work to his office, so my brain will be very tired. I will need to write down any pertinent questions.

Thank you to anyone who managed to get through all of the above. My heart goes out to all of you.
 

Nikki J

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Questions: what does my clinical exam show? If your clinical exam does not show UMN signs and your emg does not show LMN signs then I would expect they will look elsewhere for an answer.

What is in the differential at this point?

What tests do I need to narrow it down.

Does this Lyme business have any possible bearing?

If this person thinks MND is on the table in spite of the EMG based on exam and they are not a neuromuscular specialist ask to be referred to one

There is a post near the top called getting a diagnosis. It will help you prepare for your appointment. The title does not mean we expect an ALS diagnosis
 

KarenNWendyn

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The EMGs sound reassuring in terms of ruling out ALS. Did the neurologist find any abnormalities on physical exam?

You haven’t described any specific failure of muscle function, just twitching, and leg fatigue while riding your bike. And the EMG of the legs was evidently normal. This all makes ALS less likely.

So the differential diagnosis is still wide open, including many benign self-limited conditions. You have followup appointments scheduled with the neurologist and with an endocrinologist and an infectious disease specialist. You are still at the stage where your medical team is collecting data.

Unfortunately, you must be patient and wait at this stage. Let the doctors examine you, collect their data, and draw some conclusions. Most likely, you will have an answer after you have seen these different specialists. If you don’t, then it would be reasonable to seek another neurologic opinion if you still have concerning symptoms.

Best of luck!
 

April E

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Thank you, Nikki.

I neglected to mention that the neurologist did say my clinical exam was negative during my initial visit. That's why I was wondering about the comment he made regarding not being able to be sure...

I appreciate the list of questions. Thank you so much.
 

April E

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Thank you, Karen!

I'm just so tired all of the time that all of this feels overwhelming. Thank you for your time and feedback. I appreciate it so much.
 

KarenNWendyn

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Normal neuro exam, normal EMG — you’re good! Rest well...
 

April E

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Thank you again, Karen...

I can't for the life of me figure out why he would say that. It pretty much deflated me before I even got started. I guess we can never be sure of anything in this life. Maybe that's what he meant.

I appreciate you taking the time to reassure me. Bless you and I hope your dreams are sweet tonight.
 

April E

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Follow up:

I had my neurology follow up today. He said my Clinical exam was normal as were the EMGs and the nerve conduction study, other than the carpal tunnel syndrome. He then said, "we like to be honest with our patients, and these tests aren't 100% accurate." He went on to say to contact him immediately if I notice new symptoms. If I have no new symptoms, I go back every year for three years, at which point he would be fairly certain it is BFS.

So, while I'm thankful everything was negative today, it's hard to feel relieved. I did ask the questions Nikki advised, and basically he said the Hashimoto's could have some bearing, even though the TSH and free T4 are wnl, and he also said the Lyme disease could have some bearing as well, as it is "the great imitator". I still have to find an infectious disease doctor who will see me.

In the meantime, my PCP will not refill the Ativan he gave me when I went to him in blind panic, and I can't take the SSRI he prescribed because of bradycardia. I'm having a difficult time with the anxiety and wonder how I will not think every little thing is a new symptom.

Just wondering if you have any thoughts. I was hopeful that such an extensive EMG would rule out the bad stuff. He rechecked my reflexes today and they are still normal.

Thank you all. You are an incredibly strong and admirable group of people. God bless you all.
 

April E

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One more thing...

Can you recommend any supplements I should be taking or avoiding? I have a broad spectrum vitamin E, a B complex, Vitamin D, complete mineral complex and Vitamin C. I don't know if I should be taking all that Vitamin E, it's a big dose, but I had read somewhere that it might be beneficial.

Thank you again, I appreciate any feedback.
 

KimT

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My only recommendation is to have your vitamins and minerals checked and take any supplements to correct deficiencies.

We don't usually dispense medical advice.

I think it will best serve your anxiety to stay off this forum. Please work with your doctor(s).
 

April E

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Thank you, Kim, for your honest advice. The crazy thing is that this has been going on for close to a year and I only recently, in the past month, began having this overwhelming anxiety. Thank you again, and I'm reminded I need to live by your quote...
 

lgelb

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Hi April,

I doubt you have chronic Lyme, a largely for-profit creation, but you could follow up with a legit ID doc. Given your thyroid issues and weight loss, I would see at least one endo -- didn't you have an appointment with one?

It's best not to just slug down supplements. There are many subtypes of E, but end of day, large doses can cause bleeding. Unless you have some condition suggesting more, I would not take more than the RDA. In terms of your list, I would stay with a multi pending some evidence that you need more. It takes energy to metabolize those that you may not have, and they can have other side effects.

While your doc wanted to be cautious and give you the disclaimer, normal everything including the EMG suggests something other than a neurological problem.

Best,
Laurie
 

April E

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Thank You, Laurie.

Yes, I have an appointment with an endocrinologist on Thursday, he is supposed to be the "guru of glands" according to my sister-in-law.:smile:

My PCP referred me to an I.D. Doctor, but I have had no response to my call. I don't have to have a referral with the insurance I have, so I guess I will just try another I.D. Doctor.

Thanks again for your kind response. I appreciate your take on the supplements, as well. I am going to do my best to take it one day at a time.

Peace, April
 

April E

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Hello again...

I finally received feedback from labs ordered by endocrinologist. While the Hashimoto's disease is confirmed, all other thyroid studies (TSH, T4, T3) remain wnl. The only lab value that was abnormal was a slightly elevated calcium at 10.8. B12 and Magnesium were fine. I have lost an additional 10 pounds since I last posted (just about 50 pounds total since February) and have absolutely no appetite. I have to force my self to eat. I was so hoping for a diagnosis of hyperthyroidism to explain all of the symptoms I've been experiencing.

I have yet to find a legitimate infectious disease doctor who will see me to evaluate the positive Lyme disease (did have tick and rash and low grade fevers) from 2014. The most recent one I tried was yesterday and he will only see me if I have a Western Blot ordered by my PCP which the infectious disease doctor can evaluate prior to even agreeing to see me. The initial infection was so long ago, it will most likely be negative. I would like an opportunity to at least talk to someone face to face regarding my declining health. This is frustrating since the neurologist specifically advised me to follow up, but I hesitate to contact a "LLMD" because I don't know if they are reliable.

I'm continuing to have the fasics and find myself to be extremely fatigued. I've had a few instances of my left arm moving by itself when I'm lying down, which is new. Not a jerk, but more like my elbow flexing spontaneously followed by my arm crossing over my body. My hand feels clumsy buttoning shirts or putting in earrings. In retrospect, last summer when I started to notice things were amiss, I now recall that I let my garden go to seed because I didn't have the energy to weed it. We normally have a huge garden and can and freeze a lot of produce as well as eating it fresh. And I didn't pick the wild raspberries as I do yearly. I only mention these things because I'm just now connecting them. I'm wondering if anyone had fatigue and extreme weight loss/loss of appetite as early symptoms?

The neuro told me to call immediately with new s/s. It has only been a month, and I don't know if clumsy hands and ghostly arm movements count.....

Any thoughts?

Thank you,

April
 

Clearwater AL

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April, I have read your posts. You have been answered by extremely knowledgeable
members.

As You wrote...

"I have yet to find a legitimate infectious disease doctor who will see me to evaluate the positive Lyme disease (did have tick and rash and low grade fevers) from 2014. The most recent one I tried was yesterday and he will only see me if I have a Western Blot ordered by my PCP which the infectious disease doctor can evaluate prior to even agreeing to see me. The initial infection was so long ago, it will most likely be negative. I would like an opportunity to at least talk to someone face to face regarding my declining health. This is frustrating since the neurologist specifically advised me to follow up, but I hesitate to contact a "LLMD" because I don't know if they are reliable."

It's apparent you have no trust for highly educated and highly trained doctors
using words like they aren't ... "legitimate" and "reliable."

So, with all the replies from extremely knowledgeable members, maybe applying the same to
them, and 9 posts...

why are you still here?
 
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