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Maya77

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Cleveland
Hi everyone! I'm new here and scared. Below is a list of dr diagnoses I've gotten--yet no one firm diagnosis yet. Any insight?

1. Weight loss 11/1/14 162 lbs, 11/10/15 120 lbs--without trying.
2. No reaction to babinski test
3. Abnormal Rhomberg
4. Few beat ankle clonus bilaterally
5. Bilateral Hoffman's sign and crossed adductors, worse on right
6. DTR's 3+/4 throughout with flexor plantar responses bilaterally
7. Positive Rhomberg
8. Hyperreflexia and hemisensory loss with FH of MS
9. Tachycardia
10. Parethesias
11. Low creatinine (since 2013)
12. On and off low hematocrit, on and off anemia
13. Lyme Abs IgG/IgM 0.20
14. EMG: small fiber neuropathy cannot be ruled out. Very mild chronic neurogenic change is detected in one foreleg muscle. Isolated mild chronic motor axon loss in left abductor hallucis muscle.
15. MRI of cervical and thoracic spine: slight reversal of normal cervical lordosis with mild dextrocurvature of the cervical spine. Mild levoscoliosis of the upper thoracic spine.
16. MRI of brain: normal parenchymal volume loss.
17. Co2 has been low periodically
18. Urinalysis (multiple) show hemoglobin/blood in urine, red blood cells, and squamous epithelial cells
19. Cholesterol was high one year ago--now totally normal
20. High prolactin
21. Hx of trigeminal neuralgia
22. Hx of dysphagia dating back to 10/09--worse now.'
23. T-wave abnormalities in many EKG's
The above are all doctor diagnosed. My symptoms are so many I can't even list them all, but most notably severe twitching in legs arms abdomen back, muscle (arms and leg) weakness and shakiness, freezing cold all the time, and hands feet and lower legs feel cold to touch all the time. I have fallen 3 times--just standing and lost balance and fell to ground. I'm off balance a lot! Hard to stand for long periods of time. Heart rate is always above 100 when standing even on beta blockers. And much more. Swallowing issues like swallowing while talking etc. drooling (very recent), and drinks spilling out of my mouth while drinking (recent).

I see a second neuromuscular specialist in 2 weeks. What are the chances this is ALS? I'm a 38 1/2 year old female. And a single mom. And scared to death!
 
By the way this was all from Cleveland clinic dr and one that I just saw mentioned in another thread! I hate the clinic! Going to UH for second opinion!
 
Lot's of trees. Poor view of the forest. I don't see ALS in there.
Twitching is common to many conditions. Even healthy people twitch. It is not diagnostic.
ALS has nothing to do with your heart or your freezing.

The big question concerning ALS is: Do you have a muscle that is limp, useless, and doesn't contract? This muscle won't "feel" weak, exhausted, burning or anything at all--it simply won't go. Typically, it's dropfoot caused by a paralyzed muscle.

The EMG is your friend. ALS will show up on an EMG. Apparently, it didn't, or your neurologist would have told you.

Keep your appointment. But what if your problem is not neurological? You should see your family GP. GP's are trained to investigate health problems and call in the appropriate specialist when needed.

In the meantime, I don't see why you're worried about ALS.
 
The neuro mentioned MS, other neuromuscular disorders, ALS, and I said it could be late stage Lyme but no one wants anything to do with that for some reason. I have a spinal tap set up and dr says she won't diagnose me til that is done. I drop things a lot, it's very hard to write, and I fall. I don't know but the fact ALS was brought up and I'm having another EMG (more involved--this one was just one side of my body and only arm/leg muscles)--not so in depth? I pray you are right! Thank you and God bless you all who suffer from this disease! My 6 year old raised money for ALS last year as our friend has it.
 
For a doctor to tell you all those scary things seems kind of irresponsible to me.
 
That's why I'm seeking a second opinion as the Cleveland clinic isn't all it's cracked up to be. I also have tongue fascillations while my tongue is relaxed inside my mouth. Is this symptom only an ALS symptom? Sorry for all the questions!
 
No tongue twitches can be, and are usually benign- just like other twitching. It is not specific to ALS
 
I would see an internist to try to address the low-hanging fruit, like tachycardia and any systemic infection/disorder. A lot of these features look secondary to stress, anxiety and/or inadequately-treated tachycardia. Some look incidental and probably not important. Things like blood in urine call for specific tests that I don't know if you've had or not. But I would find an IM who treats the medically complex, walk through this problem list, prioritize and develop a diagnostic plan. S/he could also get some hx relative to possible Lyme exposure and determine if an abx course is warranted.
 
Unfortunately I've seen every specialist and had every blood test to rule out other disorders. That is why I'm so scared!
 
They have ruled out Lyme (by one Elisa test--but I wanted more in depth testing because I grew up in the woods and riding horses). They have also ruled out all autoimmune issues. My cardio doc says it's not stemming from my heart, it's something that's causing my heart to beat so fast. Seen urologist, had bladder scoped, seen gi had endoscope and colonoscopy, seen endocrinology he ruled out his stuff, saw my primary care doc and she said this is last step. I'm sure I missed some other specialists I've seen too. They've taken more blood from me the past year than I've had taken in my entire life. So stressful!
 
ALS doesn't make the heart go fast.
 
I know--the heart beating fast is the least of my worries actually. The constant whole body twitching and vibrating, the loss of strength and weight loss, the balance issues, falls and constantly dropping things are my main concerns 😣
 
So sorry for what is going on with you.

We really can't see ALS in that huge list.

I'm afraid this is a very specific forum for giving support to people with ALS so we can't really untangle this.

I do wish you all the best.
 
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