My 8 Months Update

[crotwich]

Hey guys,

Since for almost 5 months we don't have new members around here, it seems I am still among the newest (partially) active members on the board.

Well, here is my newbie story with an update: 8 months ago I started to have problems with constant body wide fasciculations, which are most pronounced in the muscles of my legs and feet. I also have a constant fatigue and pain in my right leg which is increasing over time.

All my blood tests came back normal, except for slightly increased HbA1c (it was 6.3%, while the reference values are between 4,5 – 6,0%). During September and October 2014 I was examined by several experienced neuromuscular specialists and university professors and they independently concluded that there are no clinical and EMG signs of MND, so they gave me the diagnosis of BFS. However, some of my EMG results were not completely clean (some large amplitude MUPs were spotted in the muscles of my feet) and the neuros said that these findings are consistent with a mild chronic bilateral L5S1 radiculopathy. On the other hand, according to my neuros, the MRI of my LS spine was almost normal and of no concern (it showed dorsomedial disc protrusion of 4mm at L5S1). Even though I was happy with the diagnosis of BFS, the radiculopathy diagnosis was a little bit strange to me, since the MRIs of my cervical and LS spine didn't show anything notably. But since they are the experts, I wasn't concerned much.

With the passage of time, the pain and fatigue in my right leg increased; I have a constant fatigue accompanied by cramp-like feelings when walking and standing (but fortunately no real cramps). Also, 1.5 months ago I started to have constant fasciculations in my right hand, especially in my thenar area. Then I spotted I have some flattening in my right thenar area and that there one big dent there (I am left handed BTW). Since I didn't notice any weakness or worse dexterity in my thumb, I hoped this was due to loss of subcutaneous tissue. However, when I showed it to my GP, he was concerned and refereed me to see a neurologist. I was lucky enough to schedule an appointment with Prof Orla Hardiman, who is of the leading MND specialist in Ireland (http://en.wikipedia.org/wiki/Orla_Hardiman). This time I was really scared, since as we all know, fasics with atrophy don't lead into anything nice.

Here is a brief overview of my appointment with Prof Hardiman:

- Her assistant neurologist did the usual clinical examination and she didn't find anything concerning. I also showed her the "atrophy" in my right thenar eminence. She said that, according to her, this is no real atrophy, and that even if it is, some noticeable weakness or loss of dexterity would be present.

- After my exam was done, prof. Hardiman arrived in the room. She was very nice and friendly. I first showed her my fasics in my calves (which are constant and very aggressive) but she wasn't impressed at all. She just said: "Oh yes... benign fasciculations...". I also asked her about this "thenar atrophy". She made a quick strength test, and repeated what here assistant said. Then she added: "So I guess you are probably worried about MND? Well... you don't have it". (It was such a relief to hear that from her mouth.) I also asked her about contradictory information about fasics being a precursor of MND. Here is her answer (new twitchers, please pay attention):

1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.
2. Fasics themselves are no real indicator of MND or any other disease.
3. In most cases, fasics are of benign origin.
4. I have NEVER had a patient with BFS who progressed to MND. And I had a lot of MND (and BFS) patients in my clinical practice.
5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notice them.

Then she repeated once again that I don't have MND, but for my peace of mind, she will order another EMG within the next couple of weeks. In the meanwhile I also called my neuromuscular specialist who made my last (and the most thorough) EMG. She has more than 40 years of clinical experience and she almost repeated the same words as Prof Hardiman did. Then she added that my EMG was in fact within normal ranges for my age group (i.e. many people around my age have worse EMG results than mine).

At the end of this post I would like to thank Yulia for her constant support and Docen for answering my questions. I would also like to add a few thoughts, mainly intended for (hopefully) new members:
1. You can have many strange and annoying symptoms, but that doesn't mean anything sinister is going on.
2. Never interpret your EMG results by yourselves (unless you are an expert).
3. Believe in your doctors, they are the ones who are experts and who know your complete clinical picture.
4. If, for some reason, you don't think your doctor is good enough, go to a proven specialist, even if you will have to wait a little bit longer.
5. There are many scary stories on the net, but you don't know who wrote them and which information are (incidentally of deliberately) missing. You just cannot know the complete story and let alone identify with it.

crotwitch

P.S. Did anybody else experience constant fatigue/pain in some part of the body? If so, can you please write when and how did it resolve. I am taking Lyrica (pregabalin) for 3 weeks but I don't see any effect.

[Bibi]

Thank You for The Update ! And congratulations with The good news !
I am 10 months in and still very worried ,and my neuro just tell mé to wait and see after he saw The fascikulations in my feet. Soit is so Nice to Read a story like yours !

[nickston]

I agree about yulia. What a kind and helpful soul you are Yulia!

[Yuliasir]

Ha, great news from Dublin!

Thnks for good words.

As for weakness, it might be a real one casued by radiculopathy, then you may need to treat the root cause, as for perceived one - I know that only time helps probably. I also noted that I personally have this weak feeling if my limbs are not warmed enough (even in the warm room and even in summer) and having a bit of long sleeves or socks really helps. Do not know why it happens (probably a circulatory issue) but it really helps.

[crotwich]

Thank you very much Bibi and Yulia.

Bibi: I am sorry to hear what your neurologist told you. If you had a normal clinical exam and a normal EMG after the onset of fasicuclations, in my humble opinion you shouldn't be worried about MND. Especially, if after 10 months of twitching you don't have any clinical weakness or dexterity/coordination issues. Maybe, just for your peace of mind, you should visit another specialist.

Yulia: As always, you are such a great support to us all. Do you really think this pain/tiredness could be caused by radiculopathy (even if my MRI of LS spine didn't show anything significantly)?

*******************************************************************************

I don't want to start again a discussion about fasciculations being an early symptom of ALS, but I just cannot understand these contradictions. So far I was examined by 5 neuromusuclar/MND specialists. Every one of them basically repeated the same words: "In my clinical experience I didn't have any patient who has presented only with fasciculations for several months, and was finally given a diagnosis of ALS". Even Prof Eisen in his e-mail to Little Lost said: "In any event from 40 plus years of clinical experience it is extraordinarily rare for ALS to truly present with fasciculations and in my opinion if after 8 months there are no other clinical features then it is not ALS". (viewtopic.php?f=5&t=19728). On the other hand, the same Prof Eisen wrote in his book (with Prof Krieger) that in his study with 258 ALS patients, 36 (14%) of them presented only with fasciculations (usually associated with muscle cramping) and that the mean time interval between developing fasciculations and other clinical manifestations of ALS was 7.6 ± 3.4 months (3 to 11 months). Can somebody who works in medical research explain does the numbers 7.6 and 3.4 represent (respectively) the mean and the standard deviation of this measurement (from purely statistical point of view)? Also, is here the normal distribution assumed? In any case, I find this strange, since 7.6 is very close to 8.

[Yuliasir]

From the medical papers (articles) on pain management and neurology I translated I understood that it is a kind of medical consensus regardsing the fact that MRI findings and extent of pain reported by patiens have very little correlation if any, and I see in many feloows here a kind of confirmation - they clearly report issues typical for compression trauma but MRI is poorly concusive (by the way there is also a situation when MRI shows significant displacement without any pain or with pain reported as minor issue). Xray seems to be more precise for some reasons, but generally radiculopathy could be diagnosed well on the basis of patient reports (it was diagnosed for centuries before Xray and MRI).

[crotwich]

Thanks for the explanation Yulia. The only thing I found so far that helps with the pain is Aspirin. I suppose I could also try some physical therapy.
Does anybody else have a similar problem?

[Buzznerd123]

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[crotwich]

Hi Buzznerd123,

Many thanks for your post. In fact, one of my neuros suggested that I might have a glucose tolerance impairment, especially since I have a family history of diabetes. However, the endocrinologist I visited dismissed that since, according to her, I had normal 2-hour oGTT results. Then she referred me back to a neuro, so I am kind a stuck here... But, maybe I could try with a diet and see how it goes. Unfortunately, exercise usually cause more pain, so it's not a good option at the moment.

BTW, here are my last 2-hour oGTT results:
- Initial measurement: s-glucose: 5.7 mmol/L, s-insulin: 7.7 mIU/L
- 2 hour measurement: s-glucose: 2.6 mmol/L, s-insulin: 21.8 mIU/L

My first impression was they were kind of of strange, but the endocrinologist said they are OK.

[crotwich]

An update: I have just had an EMG and (as expected) it was clean. Acording to the neurophysiologist, there were no any issues in all of the tested mucles (I think 17 muscles were tested this time). I am not sure how is that possible, but EMG didn't even detect a single fascicualtion and, as usual, I was fascicualting a lot. But it seems there are many people on this board with the similar experience, so I don't care much about that.

After my modest experience with twitching, I tend to agree with BFSBurger that BFS is indeed an inflammatory condition of some kind. And I am glad to see that more and more people ond this board are being focused on the real cause of our problem, which is of course not ALS.

Oh yes, in the mean time I have also talked to Prof. Carvalho about his experience of fasics being a precursor of ALS. Here is what he said to me:

1. I do not remember any patient who I was convinced had BFS and progressed to ALS. I have one case that I reported in 2004, a old-male, who I believed was not just BFS but other neurologists diagnosed BFS and who progressed to ALS, but he was a 70-year-old male, at that age we do not expect to see BFS.
2. I have followed many many young pts with fasciculations worried with ALS, none progressed to ALS
3. I do see abnormal clinical or neurophysiological signs at any stage n ALS pts.

So, I hope that his words, together with Prof Hardiman's (and other world's top neurologists) experiences, should be more than reassuring to the new twitchers that BFS will highly unlikely progress into ALS.

[Buzznerd123]

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[leroyb]

Hi Cro,

Saw Dr Hardiman today

Same result.

[crotwich]

Great news leroyb, congrats! Both of us were very lucky to be seen by her.