Concerned and Testing EMG/MRI Next Week

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ColoradoHoosier

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Hello,

First of all, I'm sorry to those of you that are here. Given my last 10+ months of symptoms, I try to empathize with those of who have been diagnosed. I pray you stay strong and hopeful in what I can only imagine feels so hopeless.

I have been a very healthy individual my whole life, working out regularly with a clean diet. I was a college athlete and spend a lot of times in the mountains hiking and skiing. I recently got engaged at the end of last year to a fantastic woman, I feel very fortunate.

I'm concerned with my second appointment with a neurologist next week. The backstory is that in May of 2020 I experienced an infection on my leg, at the time I didn't think much of it until it grew to about 6" and had a necrotic point in the middle. I live in Colorado and had done a lot of camping and hiking around that time. My lymph node next to my groin swelled to the size of a peanut. I had a telehealth appointment and was prescribed a weeks worth of Doxycycline and the infection disappeared. A few weeks later I started to notice I would slur words when having limited alcohol, I'm 36 (35) at the time and had never experienced that after a few glasses of wine. This progressed throughout the summer, and finally came to a head in October of 2020 where I started to slur words without any alcohol. Other symptoms included back and neck pain, and overall fatigue greater than what I was accustomed to.

I had a picture of the infection and was referred to a LLMD and diagnosed with Lyme Disease in December of 2020 based on what was thought to be an EM rash. After initial blood testing, I came back positive for antibodies to Rocky Mountain Spotted Fever and Mycoplasma Pneumonia. Lyme was negative, although I've had it explained to me that ELISA and Western Blot tests are highly inaccurate. I also uncovered low TSH levels. I started treatment with high hopes things would get better.

Since then, things have not gotten better. I had a PICC line and a couple months of ceftriaxone plus supplements. My speech seemed to have some good days, but progressively never seemed to get better. The back pain, neck pain, etc. had all dissipated. Finally, in June my LLMD referred to me to a neurologist based on progression of symptoms who I saw last month. Other symptoms included difficulty swallowing liquids, and weakness in my lips/tongue (I can no longer whistle). My speech has gotten progressively worse, it is better in the mornings but ends up getting worse throughout the day and is much worse at night. I have also lost 25 lbs (I was 6'1 183 and now weight 158 lbs.).

After testing the neurologist uncovered significant fasciculations in my tongue, weakness in my cheeks (cranial nerve 7) bilaterally. It was clear to her I have something affecting my nervous system. More concerning was she then discovered spasticity in my left arm. I also had grip strength of 55 lbs in my left arm and 82 lbs with my right arm. Since then I've noticed the fingers in my left hand are not moving anything close to the speed of my right. Overall, it's not overwhelmingly noticeable but is definitely apparent. I have muscle twitching all over. Previously it was more isolated to my chest/should area earlier this year. Now it is happening in my biceps, quads, chest, and forearms. The last peculiar symptom would be I've developed vitiligo on my neck which I know can be indicative of autoimmune.

The neurologist ordered labs for autoimmune, is doing an MRI of my neck to check for demyelination or a tumor. An MRI of my brain came back fairly unremarkable only showing slight neuroinflammation/encephalitis and an empty sella. I have an EMG scheduled for later in the week. Autoimmune disorders, neuro junction disorders, and MND are all on the differential. She is not suspecting it is viral or bacterial but is not ruling it out entirely. Despite treatment I still have a fairly significant Mycoplasma infection that won't go away, it's been pretty stable for 9 months.

My hope has been in the fact that given my first Bulbar symptoms were 14 months ago I figured I'd be worse off physically than I am. Everything started after a significant infection in my leg, which doesn't seem to match up with ALS. I also know given my age and previous baseline that a slow progression of Bulbar Onset isn't out of the question.

Would anyone who has experienced Bulbar Onset relate to this? Again, I'm sorry to bother you all. Transparently, I'm hoping after next week that a repeat visit to this forum isn't necessary.

Best Regards,
 

Nikki J

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You have many symptoms/ signs that are clearly not ALS. It seems far more likely that everything is related rather than 2 things . If your emg does not give an answer you might consider a consult with an infectious disease specialist at a University medical center

good luck with the emg. Please do let us know what the answer is
 

ColoradoHoosier

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Hi Nikki,

I appreciate the reply, if the MRI/EMG/Spinal Tap don't give clarity I am planning a trip to Mayo Clinic in MN. I'll probably go there regardless for a second opinion.

What things would not be indicative of ALS? I guess the tongue fasciculations/tremor, bilateral facial weakness, and now one limb appearing to be getting weaker had me most worried. I understand that fasciculations all over is not indicative of early ALS, they did start to get bad about a month or two ago which is about 1 year from the onset of everything.

The neck MRI is scheduled Monday and the EMG is scheduled for Thursday. I'll be happy to report back post EMG with the results. Praying for a clean EMG.

Thanks again, many hugs and prayers to those of you impacted.
 

Nikki J

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Vitiligo, leg infection at onset , positive RMSF and myoplasma those are clearly unrelated to ALS but may be related to your symptom complex. I knew a man with severe facial and bulbar type symptoms from Lyme. You don’t have that but have other infectious disease issues
 

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I am very concerned that your neuro is a referral from an LLMD who diagnosed and treated you with all the frequent scams of that group. LLMDland is a vipers' nest of cross-referrals and monetary motivations. Even if your EMG shows something, it is the cause of that "something" that matters most.

I don't trust your original diagnoses, the treatment you had (which is rote for LLMDs, as it's much more lucrative than the office visit for writing you an oral drug), or any of it. "Mycoplasma" [sic -- multiple organisms!] is a clear red flag dx, classically supposedly just hangs around as long as you let your wallet be used as an ATM, and is tied to a lot of millionaires but not RMSF [wood ticks, not deer ticks]. And you showed up with both, + low TSH, in an otherwise healthy 30-something body?

It is very possible that your infection should have treated with something other than ceftria and now you have a suboptimally treated infection that can go/stay anywhere, including effects on the nerves that control speech, facial movement and so on.

While ceftria is a second line for Lyme, that's caused by a different organism, and treating it without treating the other organisms you're supposedly infected with (after the recommended minimum doxy course, which in RMSF relies on when your fever, which you didn't mention, breaks)... well, it would be like running track in a swimming pool. So if your diagnoses were right, your treatment was wrong, and if the diagnoses were wrong, obviously you need new ones.

I would go to an ID specialist at a major medical center post-haste. There are certainly some in Denver. I would ask about IDSA membership and ABIM certification in Infectious Diseases.

ALS isn't your problem, but the problem you do have needs to be treated, for real. Please don't delay.

Best,
Laurie
 

ColoradoHoosier

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Hi Laurie,

I do really appreciate your message, there was more backstory I didn't mention because I didn't want to flood this forum with something that is clearly not ALS. I have been IGG/IGM positive for Mycoplasma Pneumonia every month for 9 months. I was 600 IGG (>320 positive) and 1864 IGM (>950 positive) in November 2020. As of July 21' I was 447 IGG and 942 IGM (low positive). I have high results for IGG subclass 4 and positive for total hepatitis A. I was prescribed liothyronine for my low TSH. Antibiotic wise I was on a month of Clarithromycin, avelox at one point and cefdinir. Because of no improvement in the infection I was put on a picc line with Ceftria and Levaquin. Because of no improvement there my LLMD said I should see a neurologist. He did not refer me to his neurologist, we tried 2 or 3 and finally found one I could get to in a timely fashion (the other 2 or 3 were booked out 3+ months). The RMSF was IGM positive but not IGG, so he thought this could be a previous infection. I had essentially no diuretic hormone so I was dx'd with Diabetes Insipidus. I have been on a pituitrophin supplement for that since. I also have been on probiotics/supplements to counteract the medication I've been on. The doctor dx'd babesiosis and put me on malarone and hydroxychloroquine for this as well.

That's more of the backstory, the part that is scary is you and I are in agreeance. I feel like the original dx could of been incorrect. The infections are correct, they have been done by labcorp independently of my doctor. My diagnostic symptoms have been worsening dysarthia for 12+ months, eventual dysphonia, and dysphagia (aspiration) when I drink water. The neurophysiologist uncovered the "bag of worms" tongue fasciculations and atrophy, facial weakness/polyradiculopathy in cranial nerves 7 & 12. Cranial nerve 8 and my balance was cleaner despite ongoing tinnitus. It was her opinion after my initial exam that infectious diseases were less likely to be the cause of this.

She then uncovered spasticity and weakness in my left arm. I've had no neuropathy, but have had weakness in my fingers/forearm on my left side. The only way to describe it would be almost like arthritis. Like thick joints or something heavy is in my fingers if that makes sense? I also do not have the same dexterity in my left arm as I did previously.

She is doing the EMG/bloodwork/MRI with autoimmune disorders, neuromuscular junction disorders, and MND as possibilities. Given my tongue presenting with bag of worms like fasciculations, progressive speech and swallowing issues, and now one limb with onset of weakness/spasticity is my major cause for concern. In addition, I found some research from the NIH correlating long term chronic mycoplasma infections and ALS onset which doesn't help my concern. I assure you, I'm praying daily it is not and I know statistically it wouldn't make sense (Bulbar onset at age 35), I'd be 100 or 150 out of 365 million in the US.

I do take some solace in hearing you all say in your opinion as someone experiencing this disease either as a PALS or CALS that it doesn't make sense to you. I'm just waiting on the EMG (it will be this Thursday) and will hopefully be able to figure it out from there. I'll plan on visiting Mayo or a university hospital here in Denver for more opinions as well. I'll report back with the EMG after Thursday.

Thanks again, and I'm sorry to invade your forum. Given that my neurophysiologist has NMD as a diagnostic possibility is what lead to me to here, I'm sure you can understand.
 

Nikki J

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The only mycoplasma paper I found was 2002. If it had amounted to anything there should have been more published

let is know what happens Thursday. Good luck
 

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I had the EMG yesterday, unfortunately it did show motor neuron damage and denervation in my left arm and left leg. My left arm was on the ulnar side near my pinky. The left leg was my flexor ability (admittedly I haven't noticed any issue with my legs). My right side was unremarkable with no damage. My neurologist said that the damage was very light and she had to fish for it pretty hard to find. My tongue and face obviously had damage as well. I am still waiting for the official report which I'll post when I receive it.

She said there wasn't enough there to meet guidelines to clinically diagnose me with ALS based on the findings, but that it isn't ruled out to see how I progress over the next 3-4 months. She is ordering a spinal tap to check my spinal fluid for viruses, bacteria, etc. Obviously she'll be looking for Lyme and co-infections, west nile exposure, proteins, inflammation, etc. She also isn't ruling out that the antibiotic use I've had could of caused toxicity in the motor neurons.

I'm not a doctor and don't have experience in this, I guess I would figure if I had ALS given my first onset of symptoms was dysarthia when having limited alcohol 15 months ago that has progressed that I would be worse off than I am at this point? Or that the EMG would of came back with worse than what it did? Any thoughts on this?

I'll post my EMG as soon as the results are uploaded to my case file, I do appreciate all of your help. Positive news in that ALS wasn't clear diagnostically, but still not "out of the woods" so to speak until more tests and time has passed.
 

Nikki J

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Progression varies so much no one can say but if your emg isn’t diagnostic at this stage that is a hopeful sign. Remember to block identifying information before posting your result
 

ColoradoHoosier

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Attached are the EMG results. My hope has dwindled pretty far into it being anything other than a MND. I'm hoping the spinal tap reveals something, but am realistic into my clinical presentation.

Either way, I plan on going to get a second opinion.

I'm trying to find peace with the diagnosis regardless. Like all things I've done in life, I'll relentlessly fight for a positive outcome.

I know we are not all doctors, but given there is a lot of experience with this disease. Is there anything in this EMG that could suggest something else?

I truly do appreciate all of your support and help.
 

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lgelb

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There is a great deal to suggest something else. Just off the top, for example, motor neuron recruitment was normal. And the pattern of abnormalities is not typical. I'm not going to go through it point by point because we have worried well here who don't need to obsess over EMGs.

Rather than only follow up from the neurology side, therefore, I continue to urge you to follow up on the infectious disease strand, with a mainstream specialist. A CSF analysis isn't the only method of evaluating infections such as you may or may not have.
 

ColoradoHoosier

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So the spinal tap came back fairly unremarkable so far (I'm still awaiting some of the results). WBC and RBC were normal, I had borderline elevated proteins and that is it so far.

I am in contact with Mayo Clinic to see an infectious disease specialist (among others), still praying for a good outcome but am trying to find peace no matter the diagnosis.

Speech continues to remain the same (or maybe slightly worsen) and I can definitely tell dexterity and grip strength in my left arm has declined. I'm hoping Mayo can find something, but I'm assuming if they can't find anything else it'll be a wait and see what happens over the next 3-6 months.

Appreciate your help on this!
 

ColoradoHoosier

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So I was diagnosed with Bulbar Onset ALS after all of the testing. I have taken a month to process it, we bumped up our wedding from May to October 27th (3 weeks). I have an appointment with another neurologist who specializes in ALS here in Denver on November 1st. I'm sure I'll be back soon to become more actively involved, trying to process the whole thing and think about trials, etc. It's fairly overwhelming to start, but I know prepping now is wise. Given that my symptoms have been going on for about a year and a 1/2 I'm hoping that my progression is slow given that I'm 36 and as of right now have left arm weakness and bulbar issues. Everything else (outside of shortness of breath) seems to be doing well so far.

Any info on where to start would be greatly appreciated!
 

Nikki J

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Sorry to hear that. If you have not yet had it a second opinion from an ALS specialist is a must even if your original diagnosis was made by one. If it wasn’t an ALS specialist at an academic center then it is even more important and urgent. I would prioritize genetic testing if you have not had it and also looking at clinical trials. If you have sod1 there is currently expanded access to a genetic treatment and there are trials for 3 other mutations. If you don’t have a mutation identified the Healey platform trial is one option but there are others. Trials have time from onset criteria. Healey is three years but many are 2 years
 
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