Old 08-30-2008, 08:40 PM #1 (permalink)
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Question Not certain if I have ALS.

Hello everyone,

40 years of age (female).

I am new to this site but didn't know where else to turn for questions. For the past 4 years I have experienced symptoms that parallel MS. Yet, after multiple visits with MDs and Neurologists my findings remain inconclusive. Unfortunately, my symptoms are progressing and I have no idea what to do at this point. Below is a list of symptoms that I have experienced.

3yrs numbness/tingling in left arm and left leg.
Aprox 16 mos ago I experienced continuous fatigue in left arm and left leg after using lower body weights for legs.
Extreme fatigue for the last year. I taught spinning (indoor cycling) but had to refrain from doing so 2 years ago.
Approx 6 mos ago I experienced significant dizziness for about 3 mos. Went to see an ENT thinking it was just an inner ear infection but results were inconclusive and it was suggested that I go back to a neurologist to check for demylination of the cervical spine.
In the last 2 mos, my neck has felt very heavy and full. I am now having difficulty swallowing and talking as my tongue has lost sensation and its ability to compose certain words.

I have also had three Brain MRIs with and w/out contrast along with a cervical spine MRI and of the Thoracic. Findings were still normal. Furthermore, I have had an evoked potential, nerve conduction, skin biopsy tests as well and all normal. My Thyroid has been tested along with lyme disease and anything else the Neurologists could think of as well and all concluded normal.

I spoke with an MD a week ago and shared that I am feeling worse and getting concerned as this is now affecting my occupation. Throughout the day I have to speak over a microphone but my tongue tires very easily and feels strained to the point where I cannot talk any longer. He said that he was certain that this wasn't ALS but I don't feel very confident in his viewpoint.

Do my symptoms have to progress further before some sort of result is made? First the first time, I am very frightened and don't know what direction to venture.

Thank you and look forward to a reply, anything would help.
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Old 08-30-2008, 09:16 PM #2 (permalink)
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Hi Szzq
I was reading you post and cant say this sounds like ALS there are too many sensory problems.
Have you had a spinal tap or emgs.
I think you need further testing.
But it really doesnt sound like ALS


Good lucK Pat
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Old 08-30-2008, 09:23 PM #3 (permalink)
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I forgot to mention something that a few people have noticed including my husband. My jaw bone-line has thinned quite a bit also but not sure if this is related.
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Old 08-30-2008, 09:57 PM #4 (permalink)
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Default Hi Pat

First and foremost, thank you for taking the time to respond. For some time, I thought it was MS as I was told that I most likely had the early onset symptoms of the disease. However, when the tongue numbness along with slurred speech, weakness in the neck and limbs I didn't quite know which direction to turn.

I have not had a spinal tap as the initial Neurologist thought that the yield would be too low for results. As far as countless blood work I do know that I am not vitamin deficient in anything and overall the physicians are not certain.

In the last week my entire left side became numb including my face and I cannot figure out why. It is interesting how this condition whatever it is, is manifesting in alarming ways.

Any thoughts as to why my tongue is encountering problems?

Thankfully,
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Old 08-30-2008, 10:43 PM #5 (permalink)
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I agree with Pat: that does not sound like ALS.

Have they done an EMG?

Has there been any discussion about vasculitis?
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Old 08-30-2008, 11:08 PM #6 (permalink)
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Yes an EMG exam was performed about 1 year ago and all was normal. This is why I am so confused as to the weakness or aching in my leg and arm (left) that are increasing. However, the thickness and stiffness in my neck along with the tongue problem is most frightening.

After reviewing my notes I did converse with the second Neurologist regarding vasculitis and he said he didn't think that was the case due to the overall symptoms. Originally, I thought it might be a vasculature problem as well.

I can't thank you enough for responding, it is calming to converse with individuals who are familiar with this issue. I am all ears for any other suggestions.
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Old 08-30-2008, 11:16 PM #7 (permalink)
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The EMG can be clean if only small nerve fibers are being affected. Numbness and tingling would point to small fibers. Was the EMG thorough? Do you have any muscle atrophy other than the possible atrophy you mentioned at your jaw line?

Are you getting enough sleep? Have they tested you for sleep apnea? Approximately half of those with sleep apnea have high blood pressure. Do you have high blood pressure?

Does your weakness wax and wane?

Why don't they think it's MS? There are a few different forms of MS, one of which can be progressive.
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Old 08-30-2008, 11:39 PM #8 (permalink)
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I believe the EMG was thorough, at least I would hope so.

As far as sleep I do get a lot of sleep perhaps too much because I am always so tired. The symptoms have fluctuated in the past but seem to be pretty consistent now as far as the tingling/numbness and weakness. Definitely, I notice that my left leg does not want to follow the same pattern as the right. I don't want to rule out MS as you are right there is a progressive form and it does affect people differently. One thing I am beginning to notice is small aching pains that fluctuate in the left arm and leg.

I haven't noticed any atrophy in the legs, arms or anywhere else but in the jaw-line which is puzzling. This is the area that people have commented on mostly as far as a visual. Perhaps it is tied in somehow with the neck and tongue issue.

As far as blood pressure, it has always been normal or low.
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Old 08-30-2008, 11:48 PM #9 (permalink)
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Just as another note. The last Neurologist I had an appt. with stated that ALS is very difficult to diagnos but that MS was not ruled out at this point. He said to come back in if a new development arose. Yet, this is the most frustrating part as it takes over a month to see a Neurologist out here.
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Old 08-31-2008, 12:17 AM #10 (permalink)
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You have something, but it certainly doesn't sound like ALS. It does take time to diagnose, mainly because they want to rule-out everything else before making that diagnosis.

That is just the thing with sleep apnea: you can get 10 hours of "sleep" a night . . . but if you have sleep apnea . . . you won't feel rested because that sleep is being continually interrupted. Something to think about when it comes to your fatigue. It could also be exacerbating your symptoms.

As for your other symptoms: it sounds like you have had many, many tests. Maybe they should repeat some of them now that your symptoms are more consistent.
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Old 08-31-2008, 09:39 AM #11 (permalink)
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Wright,

Thank you, as the insight has been helpful and I think you are right about repeating some of the tests with the new developments. It has been so difficult on myself and my husband as we really wanted to start having children over the past few years but didn't know what to do because of all of this. It has been so hard to lose quality of life physically and mentally that still results in the unknown. Considering my symptoms and my age now we think it would be best not to start a family but it still doesn't make it any easier to handle.

I really appreciate your time with this and please let me know if I can do anything on my end for your time.

Thank you, szzq
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Old 08-31-2008, 04:03 PM #12 (permalink)
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Default hi szzq

how many mri's have you had? were they done every 6mths?
some peoples brains in the early stages are able to repair the myelin sheath,so the plaques dont show up.
a mri every 6mths is needed to catch the myelin damage.
i was thought to have possible ms and had many serial mri's for 7yrs,the last one was also to check for cerebeller/multi system atrophy. all were clear.
i was 99% sure it was ms(one of my aunts had ms)
i too had a evoked potentials test and eeg,did not have contrast dye with my mri's either(my hospital is a small town one with a old mri) i may take this up with my neuro.
after all the test going even genetic(genetic have to be sent to london) i was told it was mnd.i have umn and slight lmn symptoms.
my next step is to get a muscle biopsy,have you had this done?
i hope you get more answers at your next appointment.
take good care.
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Old 08-31-2008, 06:39 PM #13 (permalink)
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Hi Caroline,

Yes, I have had 3 Brain MRIs and all were done over the last 3yrs. Also, I have had the muscle biopsy and that came back negative as well which surprised me. The only thing that the Neuros haven't had me repeat is an MRI of the cervical spine which I will bring up with this next appt.

Yes I hope to get some answers but I feel as though I live at the doctor's office. I have always been a strong lady but I am at my witts end with this. Very frustrating not knowing.

Thank you for your message.
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Old 09-04-2008, 09:04 AM #14 (permalink)
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Have you had a emg? if not get one, if your symptoms are going on 3 yrs it would show something. BUt I agree, too many sensory issue's for als. My left side of face gets tingling alot and my jaw has thinned out and I have a pointy chin, too pointy for my taste.

best of luck
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Old 09-10-2008, 09:51 PM #15 (permalink)
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You say you had a emg 1 years ago That should be repeated. If you think you have als you should sh soMEonE at a aLS clinic.

You have something but it doesnt sound like ALS



Good luck and Gd blESS


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