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GaryinMD

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Hello,

Like many others I have been visiting this message board after experiencing symptoms that led me to the internet - that led me here.

I have read many posts and many stories on this site and have much respect for this wonderful forum.

I will try not to make this a long and hard to read post. There has been a lot that has happened / changed the past few months and I would appreciate ant feedback.

Last summer - (2018) I developed a tremor in my right ring finger. I didn't think much of it at first but it continued to get worse so I decided to have it checked by a Neurologist. I found someone local and made an appt. Before that appointment came, I woke up one morning and both calves felt very tight - like someone had inflated them with too much air. It made it difficult to walk.

The neuro said she thought tremor was an essential tremor and didn't seem concerned. I had her look at my calves and after doing a few clinical exams she didn't seem too concerned about them either - saying it could be something related to my lower spine.

After seeing my concern she sent me to have an MRI of the head to alleviate my concern about MS. The scan came back normal which was a huge relief.

Many blood tests were also done which all came back normal other than a low vitamin B. Vitamin B shots were given but didn't seem to help at all.

I began to feel the same sensation of stiffness in my lower thighs as well. I was scheduled for an EEG and Lower EMG which both came back normal.

I started to have a dull ache in my left tricep soon after and when I asked the neuro about this new symptom she said I needed to see someone who is more specialized.

We then went to Hopkins to see an ALS specialist.

All clinical exams were normal - he said he wasn't worried about ALS as I didn't present with symptoms. He ordered another EMG and Nerve Conduction Test. They checked both legs from foot to upper thigh and also right arm from hand to just below shoulder.

The Neuros message that he sent me:

The testing was primarily normal. The EMG/NCS showed only a little entrapment neuropathy of ulnar nerve at elbow and median nerve at wrist (i.e., carpal tunnel). Both are mild, commonly seen on this test, and unlikely symptomatic (outside of perhaps causing possible hand numbness on awakening at night or morning). There is NO evidence of ALS or any other disease causing injury to motor neurons, nerves, or muscles. Lumbar spine MRI with only mild arthritic changes. There is no signs of compression of nerves in lower back. For lack of any other diagnosis to provide, will diagnose Gary with cramp-fasciculation syndrome. Good news is that this condition is not a precursor to other more deleterious diseases. Treatment is symptomatic. As discussed at appointment, I recommend treatment with hydration, tonic water before bed and stretching. If this is not helpful, should add daily magnesium supplement to this regimen.

This was great news and I was so relieved.

Shortly after this I noticed new symptoms

A constant frothy mucus in my throat as well as difficulty swallowing pills that I had taken for years. Also coughing while eating and bits of food sticking in my throat on the right side. I made an appointment with an ENT who is sending me for a MBS.

Both of my legs have become tender and sore most of the time, especially the front of the thighs. The ankles feel stiff sometimes but not as much as in the beginning. There are times when I feel like I'm going to fall over but haven't yet. If I carry any extra weight at all my legs start to burn and hurt.

My face has thinned, I think its because the cheeks have drooped some. My wife says she doesn't see it but I look different than I did when this started.

Both shoulders seem much thinner as well as my upper back.

Triceps feel like someone left the air out of them, they have no strength.

I have dents where muscle used to be in several spots including thighs, shoulders, upper chest and forearms. Both hand have gotten increasingly stiff and clumsy though I still seem to have decent strength in them. Fine motor skills are getting more difficult like gripping and buttoning. Both hands feel and seem thinner, my wedding ring is even coming off which it never did before.

I can still stand on my toes, walk on my heels. Im walking and talking and eating and liquids haven't given me any problems yet.

I get a strange burning in different parts of my body, mostly upper back and shoulders - almost feels like a minor sunburn. Very strange.

Ive had fasciculations in several places. They started in both calves but I have also had them in my thighs, back, arms, face and occasionally in the hips.

Its been a roller coaster of ups and downs - there are days I have hope and many days that I tell myself that it has to be what I wont mention. I have even been to a psychiatrist because I was so distraught and worried. I truly was hoping it was just anxiety and worry that was the cause but so much has happened that cant be explained.

This turned out to be much longer than I intended. Im sorry for the long run on post. I am just very worried and am looking for some input from someone who knows much more about this than I do.

Thank you for your Time.
 

lgelb

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This could all be nothing or something, but not at all likely to be ALS from your negative exams and testing.

I'd go back to the local neuro who can see if/how things have changed from when s/he last saw you and suggest any appropriate referrals. But if you see things your wife doesn't, that could suggest your mind is working overtime to fill in the blanks. It doesn't mean it's all in your mind, though.

Best,
Laurie
 

Clearwater AL

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Gary, you were seen by an ALS Specialist at Hopkins. There's not much better
than that.

Not what you wrote but what you said he wrote...

"For lack of any other diagnosis to provide, will diagnose Gary with cramp-fasciculation syndrome. Good news is that this condition is not a precursor to other more deleterious diseases. Treatment is symptomatic. As discussed at appointment, I recommend treatment with hydration, tonic water before bed and stretching. If this is not helpful, should add daily magnesium supplement to this regimen."

You were cleared of ALS and or any other MND.

You wrote it was great news and you were relieved.

The problem is... you don't believe it.

After being fortunate to be seen by a Hopkins ALS Specialist there's not anyone
here that can go beyond the Hopkins ALS Specialists diagnosis.

Go back with your new developing symptoms.
 

GaryinMD

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Thank you for your replies - I appreciate you taking the time.

I do believe what I was told at Hopkins, it is just concerning that I have developed these new symptoms since that appointment in December when I had only a few symptoms. I have contacted the Neuro that I saw and he said he thinks its a good idea for me to see him again - which I am planning to do.

PLS is also something that I have read about - I don't know if my symptoms make that a possibility or not. It seems my symptoms started in my legs but showed up in my upper body soon after. I will ask the neuro about this also. I know they don't like to be questioned too much.
 

KarenNWendyn

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PLS is not something you go looking for. Usually there is EMG evidence of a motor neuron disease, even with PLS.

You were already given great news by a neurologist at Hopkins. Why go looking for trouble now?

Since you’re planning to see the Neurologist about your new symptoms, I’d let them do their job and leave it at that.
 

Clearwater AL

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Gary, if your thoughts are now giving consideration to PLS you better muster
up a whole load of patience.

The diagnosis (protocol) of PLS requires 3 to 5 years of observation, testing
and the exclusion of all other neurological possibilities.

Be patient until your 3rd (or more) neuro appointment. And ask about your
concerns of PLS... he/she is paid well for your appointment.
 

KimT

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You mention a lot of pain. Have you been seen by a rheumatologist?

I'd probably be looking for something other than neurological, even with the cramp/fasciculation syndrome possibility.

Do you work out or are you on a computer all day long?
 

GaryinMD

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Thank you all for responding.

♥ KarenNWendyn - I assure you that I am not looking for PLS. I knew nothing about it before reading posts on this forum. My concern is that some symptoms that were described in those posts seemed similar to the ones I'm having. I am worried about what is going on with me but am hoping for the best. I will trust the Neuro and am hoping for good news later this month when I go back to Hopkins.

Al - I will bring up my concerns about PLS when I go back this month. The last time I was there I felt like I was asking too many questions and I know some doctors get annoyed when they feel like you are doing that. This is important and I will bring it up to him.

Kim - What I'm experiencing isn't so much pain as it is an ache. Like if you worked your legs and arms too hard and they ached from it. Even the weight of letting my arms hang down by my side causes this to happen in the backs of both arms. I used to work out but not much for the past five years or so but I've always been active at home. I was splitting cords of wood last fall shortly before this started. My legs always feel tight and sore and it feels like I may tip over sometimes. The tendons feel like they are always tight like when you exercise. I don't sit much at work, I work in the medical field so I'm on my feet most of the time. There are many days that it's difficult to do my job but so far I'm still managing. I have only seen my PCP and two different Neuro doctors so far. None of them have suggested going to any other type of specialist yet.
 

Clearwater AL

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Gary, you have typed over 1,520 words and 35 paragraphs trying to
convince us you have ALS, which has been dismissed by very
knowledgeable members and apparently two Neurologists.

Now you are adding PLS in your attempt to convince the Forum
you belong here.

Until you can post an EMG summary/conclusion, if you convince
the Neuro you are going back to with new symptoms to order one…
you are not going to convince us.

The only one you are convincing is… YOU!

In your first post you wrote...

"I have even been to a psychiatrist because I was so distraught and worried."

You really need a follow up appointment there.
 
Last edited:

GaryinMD

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I apologize- I certainly did not mean to offend anyone. I won’t post anything more here on the forum. Thank you for your time and responses.
 
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