Newly diagnosed 4-16 odd symptoms

[phyllise]

I had a leg issue that was thought to be related to my L4-5 issue. Then I have an MRI due to neck and shoulder pain. They find bulging disc with forminal stenosis with C5-6 central canal of 7mm and C6-7 of 8mm. At the same time thyroid nodules are found. It was cancer and thyroid removal was done in Oct 2015. My voice hasn't been right since then still very weak. RAI done in Nov 2015. Had another MRI on shoulder in late Oct 2015 they find torn rotator cuff and labrum tear. Had to wait till Dec 2015 to have shoulder surgery. Rehab started in Jan 2016 by early March leg was worse and hand was worse therapies realized I could not lift my arm. So off to neurosurgeon who sends me for another MRI of brain and c-spine. Disc bulging more but is thought not bad enough to cause my symptoms. So then off to neurologist but had to wait a month. Had EMG and NCS that showed denervation with 1-2+ positive waves. I end up at hospital because I was feeling really bad virus like illness feeling. They make me in patient and run several blood test and do another EMG NCS and neurologist says it is ALS. Now home with antidepressant meds.

But, I am having burning stinging pains in my arms hands and front of legs and top of feet. Still feel like I have a bug with getting hot then cool but no fever.
Is this a normal symptom. I go to sleep when I sleep worried my good arm and leg want be working.
Sorry for the long details but it has been a strange journey.
I hope everyone has a blessed day.

 

[gooseberry]

I would like to say it is odd but everyone comes to their diagnosis differently. Many pals have had back surgeries. The stinging could be neuropathy...my pals had it for a bit. Be careful letting them operate. Pals do not heal the same.

 

[phyllise]

Thanks for your reply.
My burning and stinging just started after coming home. I had no twitches until they did the last EMG NCS.
I still feel like some type of bug is going on I just feel hot and sweaty.

Can the neurologist give meds for the burning and stinging?
Thanks have a blessed day.

 

[Nikki J]

Welcome and sorry to meet you here though glad you have found us. Yes you should discuss your symptoms as there may be medication depending on the cause

As we always ask, were you diagnosed by a neuromuscular specialist? Even after that you should get a second neuromuscular opinion especially given the complexity of your issues. The diagnosis if made by a neuromuscular doctor is usually correct but I would want confirmation.

Some of your issues may be related to your thyroid and that treatment and in addition there is no rule you could not have other treatable issues
Good luck

 

[phyllise]

Yes he is listed as neurologist but he gave his creditials as neuromuscular.

I have a 2nd opinion set for Mayo in Jacksonville May 17.

I have just felt so bad with the burning and stinging and when I eat anything I have diarrhea it is hard to not think something else might be going on?

I am thankful for your answer and any information is welcomed
Have a blessed day.

 

[lgelb]

Phyllis, glad you are getting a 2nd opinion as we always recommend. Antidepressants can cause the symptoms you describe so if you think you need one still, perhaps see a primary care physician to reconsider the dose and which one you are on.

Best,
Laurie

 

[laurel]

I'm glad you are seeking a second opinion too. Here is an article about certain cancers that can cause neurological symptoms. Update on Paraneoplastic Neurologic Disorders Good luck with getting answers.

 

[phyllise]

I welcome any advice or help. My prayers are with all that are facing this diagnosis.

 

[Nikki J]

Celiac disease can also have neurological manifestations so with some GI issues you might ask about that if not already ruled out. Make sure you read through the sticky in the general section on preparing for second opinions. The better prepared you are the more you will likely benefit from the appointment. It is a tough time you want to be sure of the diagnosis but you have to be prepared to accept it too. Ask any questions that occur to you. We will try to help

 

[phyllise]

Thank you for this information. I am not sure how this forum works so any advice going forward is welcome. Have a blessed week.

 

[phyllise]

Well I had the talk (very sad �&#56897 with the neuromuscular dr today. He said he thinks my condition started in my limb but is now affecting my speech. My left side thank my Heavenly Father is still working. I was going to Mayo in Jacksonville for 2nd opinion but not sure now? He told me they will just do everything he has done again and if the results are the same why. He didn't do a lumbar puncture and one other blood test(can't remember the name of it)? He said with the EMG and ncs he would bet his house that the diagnosis was correct. My day has been rough as I am sure so many of you have been.

I was given an antidepressant, Xanax, and Ri(can't remember the spelling) only drug approved for treatment.

Should I travel while I am able or not will it just wear me out?
Please pray for me as I shall pray for you.
Any suggestions on treatment or hope please please feel free to share.

 

[Atsugi]

Answers and Observations:

We never did a lumbar puncture. The EMG and symptoms were enough for a solid diagnosis.

Always get a second opinion, and only from a world-class neurologist who specializes in ALS.

Rilutek, also called Riluzole. Taken from early on, it might delay progression of the disease a little bit, giving you a few extra months of life.

Travel: Soon as possible. This only gets worse.

Suggestion: Take one day at a time. Don't worry about tomorrow. When you wake up each morning, take inventory of your condition, and then do what you can to enjoy the day.

 

[Nikki J]

I do agree get a second opinion. Not everyone gets or needs a diagnostic lp. It depends on your presentation and the doctor. Usually a neuromuscular physician is correct but still second opinion is usual.

None of us know how progression will go. It is generally not linear so plan ahead but try to focus on each day and enjoy and definitely do not put off travel or other things you want to do. Things are not going to get easier unfortunately

 

[lgelb]

Phyllis, I agree that you should get a second opinion but as I have said to others, there is no need to travel cross-country to get it. I personally would save my traveling energy for more fun trips, or at least make sure that you get some fun on the Mayo trip. If you would rather stay closer to home for the 2nd opinion, what about Vanderbilt?

 

[phyllise]

I am so thankful for your help and guidance. The Jacksonville Mayo will be combined with our 42nd wedding anniversary.
The neuromuscular dr that diagnosed me offered to send me to any of the guys he confers with but he did not know
Doctors and Medical Staff
Kevin B. Boylan, M.D.


Location
Florida
Departments
Neurology
Education
Fellow - Electromyography and Neuromuscular Disease
Department of Neurology, The Johns Hopkins University School of Medicine
Resident - Neurology
Department of Neurology, University of California, San Francisco
Fellow - Medical Genetics
Department of Pediatrics, University of California, San Francisco
Fellow - Neurology Research
Department of Neurology, University of California, San Francisco
Internship - Medicine
Department of Medicine, The Johns Hopkins University School of Medicine
MD
University of California, San Francisco
BA - Social Science
University of California, Irvine
BS - Biology
University of California, Irvine
Certifications
American Board of Electrodiagnostic Medicine
American Board of Clinical Neurophysiology
American Board of Psychiatry and Neurology
American Board of Medical Genetics and Genomics
Primary Appointment
Neurology
Academic rank
Associate Professor of Neurology
Interests
Peripheral neuropathy
Motor neuron disease
Myopathy/myositis
Inherited neuromuscular diseases
Electromyography
Publications
It seems he is qualified has anyone had interaction with this Dr?
Please have a blessed day.