update since Cleveland visit

[mustang22]

Hi, everyone. I haven't posted in quite a while, but I visit the forums often (especially when my symptoms really bother me).

Here's an update ( I guess you can look at old posts for my symptom chronology and a rundown of all of the testing I've had so I won't be longer than necessary!):

I went to Cleveland Clinic in Jan. and saw a wonderful and kind neuromuscular specialist. At first, she wanted to set up an additional appt. in the headache clinic because I first presented with strange headaches, fogginess, etc. But the headaches ceased in October, and symptoms continued to change and evolve.

So. . .she and her assoc. spent well over an hour on the basic neurological exam, and everything was good (I supposed that already because of the multitude of neurologic office exams I've had!). She then ordered a very thorough EMG (rt. side only - I was having bad twitches on rt. hand that week, BUT most of my problems are left-sided?). The doc. who performed the EMG is a specialist in emg testing - he even did my back and butt - those hurt! I met with my neuro a few hrs. later, and she told me the results were completely normal. She ordered a loooooong list of blood tests (most of them very specific to rare issues).

After waiting a few weeks for results, she (the doc) called me herself. The only test that came back abnormal was the vitamin D. I was low - 18 - and started vitamin D therapy of 50,000 i.u. a week for a month, then down to 1,000 a day after that. She didn't really seem convinced this was the problem, but it was certainly an issue (normal values are between 30-80). She was right. It didn't seem to help.

So. Here's where I am currently:

*weird! tingling/twitching esp. in feet after a warm/hot bath or shower?
*bad burning in left bicep
*burning/pain in left wrist
*arms (esp. left)/and legs falling asleep wayyyy too easily and esp. at night
*muscles fatigue/shake very easily (frustrating for an athletic person)
*continued all over twitching that has moved more to the shoulders/back, now, and they are less frequent but still basically everywhere
*hands shake
*pain "pulses" in various body parts (today, for example, I have an occasional "pulse" of pain in my lower leg
*buzzing/vibrating sensation in feet

Questions:
(1) I know ALS doesn't typically have sensory symptoms, but can anyone give me some guidance on the limbs falling asleep all the time? Should I still consider ALS with all of the other issues?
(2) My emg was on the right side, but most of my constant issues are on the left. Is the emg valid? Wright, can you give me some insight on this? I DO have right side issues, just not as bad.
(3) I have another visit to Cleveland scheduled this month, and I don't know where to go with everything! I feel like I'm in limbo-land now. Does anyone have any suggestions on other tests or questions I should ask?

Thanks so much for your help and kindness. . .

 

[planningguy]

Mustang22,

I don't really have answers to your specific questions, but wanted ot let you know I empathize on being in limbo.

I imagine with all the bloodwork they have checked the infectious disease/auto-immune angle. The "pain pulses" are interesting. Did the specialist have any insight on that?

Hopefully you'll get some better responses, and direct answers to your three questions.

Take care,

Robert

 

[mustang22]

thanks, planning guy

Thank you for your support! I've tried not to bug people on this site because I understand the sensitivity. But. . .sometimes I feel like I'm falling apart and have nowhere to land.
Yes, they did check the autoimmune angle, but I still wonder if there isn't something there. I've had so many tests. . .mri's, ct's, a lumbar puncture (that didn't test for ms)etc., but I know there has to a reason for my sudden slide into the abyss!

The pain "pulses" are all I can think of to call them. I have mentioned them, but the neurologist didn't have any answers for that. The pulses are small bursts of pain that go away as quickly as they come. They are random, but quite startling. I guess you could compare them to an abrupt, large twitch, but with apain instead of a twitch! Does that make sense?

 

[Al]

Mustang22, you are certainly not bugging anyone with an average of 1 post per week. Don't feel that you are a burden here asking legitimate questions. Just for the record your stuff sounds more like something else other than ALS to me. I'm not a doctor and have been wrong a few times before.

AL.

 

[mustang22]

Al

Al-
You are a kind soul. Let's hope your "wrong" numbers stay really, really low! I've always researched most everything in my life, and this journey has been the most perplexing of all, so I appreciate your patience with people like me.

Today is one of those days when I just want to be my "old" silly, girlie, self and I feel almost guilty for saying it when there are so many hurting worse than I. Keep the faith.

Still searching. . .
Mustang

 

[lydia]

Mustang,

I vaguely remember a discussion regarding EMGs here a while back... about doing them in the clinically unaffected limb, and that was a valid approach. Don't ask me why, I don't know-the nitty gritty details or understand half of this stuff, but if you use the search feature you might be able to find that discussion (or someone will jump in with a better explanation than mine!). I apologize if I am remembering this incorrectly. Maybe it is part of the Sticky?

Sorry to hear about the EMG in the bum, ouch! Your neuro sounds committed, hopefully she will see this through to a diagnosis (your body permitting).

I can't comment on any of your symptoms other than to note that I recently entered the sensory dysfunctional realm as well, with tingly left arm and hands (among other things). As a result of the tingly/numb arm, am being sent to an orthopedic specialist (?). Not sure what they bring to the table, but trying to remain open-minded. Have you seen that type of doctor?

Take care
Lydia

 

[KEDASO]

alot of your symptoms sound like neuropathy problems

Hi Mustang,
I have advanced CIDP, a sister disease of ALS.
I suggest you read on this, as your symptoms sound like they fall under it.
There are many variants of CIDP, including asymmetric symptoms.

Maybe this might help, and ask questions of your doctor?
KEDASO
(Ken)

 

[awieleba]

Mustang~

As far as autoimmune, you should see your records to check for a host of other things that are not in mri or lp. A good rheumotolgist would be a start.

I have low vit. d as well, Infact I think alot on here do. I heard that Vit. d being low is becoming more and more common. I take a supplement but make sure you take granule or liquid one, the caltrate kind are not absorbed as well. (I was told that by a naturapath). I try to take all my supplements bi-lingual, or under the tongue in liquid form. If you look under your tongue (ha, most of us on the site have looked at our tongue) there are soo many blood vessels and that goes right into your system instead of getting lost in gastrointestional area.

Hang in there! I have the tingles as well, they were alot worse in the start a year ago.
my limbs fall asleep more easy than they ever have but never really thought alot about before, hmmmm

You can be your silly-girl self, dont let these sx stop you! I felt that way for awhile and then thought, 'hey, I can still shop and wear cute outfits no matter what is wrong!" and it really does make me feel better to have a nice outfit on.

take care!

april

 

[wright]

Mustang

Let me start by saying that your symptoms don't point toward ALS and your clean EMG verifies that. I'm a little perplexed as to why they wouldn't give you a more thorough EMG by going to the other limb when they found the one limb to be clean. Are you sure they were aware that your left side was the more affected side? Maybe because you mentioned symptoms on the right side, they assumed that was the more affected side? Having said that, if you are having symptoms on the right side . . . even if they are less severe than the left side . . . and the EMG was clean, then that once again points away from ALS and indicates that your symptoms are due to something else. If you had CIDP (a differential as stated by Ken and a differential that is certainly indicated by your symptoms) your EMG would have shown that.

Your symptoms sound like a small fiber neuropathy to me, which are notorious for escaping detection even with the nerve conduction study of the EMG. These can be autoimmune in nature (a vasculitis perhaps) and some autoimmune conditions can escape detection by blood work. April is correct in that a rheumatologist would be the next logical step.

Are your symptoms progressing or are they waxing and waning? Do some symptoms get better while others get worse? Are you basically staying the same with occasional flare-ups?

Keep your head up and know that you are being seen by some of the smartest people around and that they will more than likely determine what is happening to you.

Take care

 

[mustang22]

Wright, thank you for your comprehensive reply. You know, the day of my appt. I was a nervous kitten. That being said, I know all of my records mention left-sided prominence, but I remember talking about my right hand twitching like crazy. Maybe that's how it came to be they tested the right side? I didn't even think about them only testing that side, in fact, I just remember being stressed out about the test and not even knowing it was only done on the right side until the next day! Mental overload, I guess!

I HAVE had two emg's. I think I mentioned the first one in one of my early posts, and it was left side and right, but very basic, in a very cold room, and only a few days after my twitching began. Does that one even count? It was clean, also. Do you think I should ask for another emg of the left side at my next appt. I shiver to think of it!

Regarding the small fiber neuropathy: I've wondered about that often. BUT. . . I always get "stuck" on the part about it not showing up in my emg's. You have me pretty curious when you say it's notorious for escaping the emg. Why is that? Also, is twitching common with that? Like I said, I've wondered about it because of the tingling/falling asleep limbs issues especially.

I saw a rheumy last Spring before my symptoms had evolved beyond headache/fogginess/muscle fatigue, so it is probably best I go back and add to the list. She didn't have anything to add to my testing at the time, but maybe with the change of symptoms. . . who knows.

Speaking of symptoms. Wax and wane? Yes. Occasional flare ups? Yes. Some get better? Yes (i.e. started with weird migrane-like all day for months headaches, but those went away after 5 months only to be replaced with the twitching). Some get worse? Yes. Limbs falling asleep more often and longer. Symptoms just flat out and out change? Yes.

However. . .my "weakness" hasn't been "weaker" even though I FEEL weaker, and my body looks the same as it did months ago.

Whew!
Thanks again for your help and such compassion!

 

[mustang22]

Since lots of you have vit. d deficiency. . . are there any good suggestions you have for a liquid or sublingual? My neurologist just said to make sure it was D3.

 

[lovelily]

I was prescribed a 'mega' dose by the doctors, that I took for 8 weeks. (soft pill) 2 months later I was tested again, and the deficiency had returned. Be sure to continue to have your blood tested at least a few times a year.

Three members of my family were 'low' on vitamin 'D'.