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JNDZ

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Hello members of the community, thank you all for reading this. I have read the stickies but believe that I could benefit from your additional input. I am a 43 year old male and I am presenting with the following:

In May 2014 I presented to my primary care provider (PCP) after experiencing severe vertigo and tinnitus and breathing problems, she thought that it was maybe my allergies, since blood tests (CBC, TSH, CMT) came back normal. After meeting with an allergist, I started on weekly allergy shots in Spring 2014. The incidence of breathing problems started to escalate over the Summer (mostly exercise induced but sometimes also just sitting around). In June I began feeling paresthesia for about a week stabbing and prickling on my right leg/behind ankle, this then disappeared. PCP mentioned maybe autoimmune issue, and lets keep an eye on it.

Fast forward to sometime during the Fall, I also started to experience increase eye floaters, they did a run of the mill look at the eye and seemed to think it was normal. I reported to optometrist who examined and also seemed to think it was normal. Sometime in Fall I also noticed some brain fog, slight difficulty recalling words and names, I thought it was due to extreme stress that I was experiencing at the time. In late fall I entered into the high concentration injections of allergy shots that I started in Spring, I stopped because the first two injections left me with a huge bolus swelling in my arm. Late in the fall I also noticed difficulty speaking and swallowing, as if my tongue was swollen. The "swelling" seems to have subsided recently.

Sometime in the Fall I also presented with carpal tunnel of the left wrist, and then a few months later in December pain on my right ankle, in the joint between the calf and ankle. PCP put me on prednisone for 11 days and then all hell broke lose while I was on vacation for the holidays. I started to experience more joint pain, muscle pain, and severe muscle weakness in legs and parts of arms, I am also noticing significant gait imbalance. I noticed some imbalance for a while, but always thought that it was due to the long-term pain in my lower back.

Muscle spams and twitching in different parts, although they seem to be focused on my left calf muscles, myoclonic jerks especially as I am starting to fall asleep (which has made sleeping quite an interesting endeavor), hoarseness of my voice, and blurry vision (not double that I can tell). Since the onset of symptoms in December, I have also been experiencing (first severe, now slightly improved) dry mouth and dry eyes (Sjogren’s like). The eyes might be worse than the mouth, and the eyes are red (much more so than usual).

Now in the past couple of week I have been waking up with numbness in my arms and legs (as if circulation was stopped to parts of it), and I wake up with immense headaches. This has come on more recently (late January). I wake up with stiff muscle, as if I had been running all night long. The PCP has referred me to a rheumatologist, who then ordered a plethora of blood and bone exams. Everything came back normal, except some minor arthritic decay in my wrist and lower back. I have been poked and prodded in all ways this past month.

In December, the PCP discovered that Vitamin D was low at 28 (range 30-100 ng/ml), B12 was on the lower end at 278 (range 200-1100 pg/ml), creatine kinase was 99 (44-196 UL). Both B12 and D have tested in the lower range previously. The B12 (while not clinically low) is suspect to me because until December I was maintaining a diet rich in B12, no red meat, but plenty of eggs and milk (at least 2 eggs a day and gallons of milk a week); I would have expected the B12 to be higher, which is why I suspected some B12 absorption problem. I am now beginning to doubt this is the case, as I recently retested blood for B12 and since starting supplements in December it is now through the roof, well above the top range.

Since December as a result of this, I have undergone a severe change in my eating habits: now mostly vegan diet, no processed sugars (only from fruits and honey), some eggs and fish (but rarely). I have lost 15-20 lbs in about a month, which is worrying me as well, so I am trying to eat more.

The rheumatologist ordered an EMG and conduction study of my right leg (which at the time was presenting with most problems), those tests also came back normal. And while I know that the EMG is one of the cornerstone tests to diagnose ALS, I am afraid that they may not have examined the correct limb. At the time I was presenting with weakness in my right leg, and they only tested my right leg. However, more recently the fasciculations are mostly present in my left leg and left side of my body. What is most worrying to me is what's been becoming more apparent these past couple of days, namely the left side of my throat is not swallowing the way it should. When I swallow it feels as if things are not going through that side, unless what I am swallowing is large enough to drag it all down. I am also having difficulties swallowing, and my speech is somewhat slurred. Until now I blamed that on the fact that I have four missing molars and I thought that I was missing proper jaw support/motion/alignment. I am experiencing sever neck pain as well, and what I believe to be neck muscle weakness. And finally a peculiar thing that I've noticed the past few months is that while my mouth has been extremely dry (again perhaps Sjogren's like) I find myself lifting the left side of my lips and sucking in air so as to dry that side of my lips because it feels like it's moist (drool like).

I am schedule for an MRI later this morning and then an ENT this afternoon. My neurologist appointment is on Friday (3 days from now). And while I realize that I should simply try to not think of it and wait until my appointments, I am sure that members of the community understand how difficult or impossible a task that is.

If you've gotten this far then thank you for reading and thank you for whatever insight you might be able to provide. Many thanks!
 

Clearwater AL

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As you wrote, ("If you've gotten this far then thank you for reading...")

Of the 11 paragraphs you wrote with stunning recall, self diagnosis and description would it be possible to put in one or two paragraphs (being you have read the Sticky) just the symptoms that might relate to a possible MND?

It is very difficult for many members in the later progression of ALS to follow a 1,000 plus word posting.
 

JNDZ

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My apologies Clearwater, I tend to be long winded. My symptoms: constant fasciculations (primarily in left side, especially leg, arm, and eyelid, but sometimes right side too), carpal tunnel on left wrist, numbness of legs and arms, migraines, feels like body parts are not receiving circulation, muscle spasms, hypnic jerks, and most recently lacking sensation/control of left side of throat, and slurred speech.

Thank you for your response and for suggesting the correction to my post. Best to you.
 

Nikki J

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Normal EMG in an area with symptoms makes this unlikely also fasciculations in so many areas point away from beginning disease. Migraines numbness feeling circulation do not sound like it. Does anyone else notice a change in speech? Plus the vision issues make it sound like something else. Glad you are getting a work up. The doctor will find the answers. I personally doubt it is going to be ALS but time and tests will tell good luck
 

ECpara

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I agree with everything Nikki mentions. Most of your symptoms don't sound at all like ALS and that clean EMG means no ALS. Incidentally, my husband's EMG (dirty) was taken in his limbs even though his only apparent symptom was his tongue. Hope your doctor finds an answer for you but I'm sure it won't be this disease.
 

JNDZ

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Thank you all for your words of reassurance. The symptoms are obviously still frightening, but I will heed your advice and try to be patient. Again, I apologize for my lengthy original description.
 

skipper66

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I'm not a expert. But, from what I do know your symptoms sure don't sound like ALS to me.
 

MaxEidswick

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>It is very difficult for many members in the later progression of ALS to follow a 1,000 plus word posting.

:)
 

JNDZ

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Thanks 'guys. I guess what's making things worse for me is this dysphagia. Is it possible to experience problems swallowing so early on? I've been only experiencing all these things for about 2 months now.
 

JNDZ

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My apologies. I just returned to the Sticky and read the answer to my question already there: "Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!"
 
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