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- Wed Apr 29, 2009 3:16 am
I am very, very sorry for my long description…
End of July ’08, after gym sessions felt progressive right calf stiffness and pain only after the last one which stopped me from exercising further.
Physician put me on 2 weeks ketoprofen orally which relieved pain but no stiffness. Days after end of treatment had a single bad cramp on right calf lasted some hours, went to general neurologist (thorough clinical neuro exam. was completely normal), also made venous eco-doppler on both legs which was normal.
Beg. of Sept. ’08 felt sudden right arm weakness and made another thorough clinical exam. with neuromuscolar neurologist and brain CT without contrast, everything normal, “I strongly believe it is psychological” was the response (weakness faded disappearing totally after several days.).
Mid September went to my “favourite neurologist” (retired but very experienced and smart, was Head of Neurology Dept. of the hospital of my city) and ordered extremely extensive blood work (I felt like blood donor!), brain, cervical and lumbar RMN’s all normal.
End of Sept. ‘08 stiffness spread to left calf and slightly to right quadriceps, physiotherapist found some minor contractures. Started feeling very few fasciculations in legs, right hand, forearms and minor cramping of right quadriceps (discontinuous, lasted many weeks, fluctuating).
End Oct. ‘08 stiffness spread to both upper forearms (more left), neck, face, went to “favourite neuro” for clinical thorough examination which was normal again. Lower limbs EMG/NCS was clean too. He put me on 0,5 mg. delorazepam 3 times a day and he was convinced it is stress/psychosis together with a peripheral nerve hyperexcitability (BFS/BCFS). Treatment showed good response on symptoms but in the meantime I got very scared about ALS.
Mid Nov. ’08 felt stiffness on left emi-thorax, slight breathing difficulties and fatigue on that side, made Thorax RX, ECG, complete blood work and thorough clin. neuro examin. all negative. By increasing delorazepam dosage slightly, emi-thorax sympt. improved and faded away in some time.
End November ‘08 made lower and upper limb needle EMG/NCS with neuromuscolar neurologist, was clean, and he told me it’s not BCFS, “it’s an psychosomatic issue”.
End December ’08 felt intermittent pain in feet after walking and feet, legs, reported to a third neurologist who carried out needle EMG/NCS (clean) on all limbs and adviced me SSRI (but I went on with benzos).
End January/beginning February ’09 stopped delorazepam very smoothly and after some weeks stiffness in limbs came back almost totally together with few widespread fasciculations and occasional random minor cramping. Reported all new symp. to “favourite neuro”, made a thorough clinical examination, all perfect and reassured me it is NOT ALS, it is BFS/BCFS.
End of February ’09 went to neuromuscolar neurologist reporting the same plus perceived light right hand weakness and minor occasional tingling/twitching external hand, made surface EMG/NCS, clean (response: benign ulnar nerve compression), made a thorough clinical examination – normal – and told me IT IS NOT ALS OR MND, it a psychosomatic issue and adv. to go on with benzos (until beginning of summer) and look for a good Psychologist.
End of march ’09 made a 4 limbs needle EMG/NCS by my 3rd neurologist, clear again. He thinks that is NOT BFS/BCFS because it seem to be progressive and advised again SSRI.
A couple of weeks ago I started feeling slight fatigue/weakness(?) on right arm and right quadriceps and occasional internal forearm spasm/cramping exercising, slight emi-thorax sympt again and increasing odd feelings in mouth: stiffness of bottom of tongue like pulling it, tongue tremor (internal fasciculations?), occasional slight slurred speech and slight swallowing difficulties (like lump in throat?). Some days ago the otorhinolaryngologist visited me and asked if I had ALS/MS in family but told that on examination was everything ok.
I am dead scared I have predominant upper motor neurone disease which will turn to classical ALS with time. Please advise me.
| John Kenyon, CNA
- Sat May 16, 2009 10:40 pm
It would seem your symptomology has been narrowed down to a few possibilities but those are difficult to narrow further. While ALS would seem to have been ruled out, it is difficult to diagnose ALS to start with, so it shouldn't be totally removed from consideration even though it seems to be less and less likely. Psychosomatic causation is possible but seems to me somewhat unlikely, as your complaints are pretty convincing. There are a couple of things that have not yet been considered, it would seem, and which are fairly obscure, such as muscle spasticity due to poor metabolism of potassium or loss of potassium (K) through some faulty mechanism. This is usually managed through potassium supplementation since the mechanism of loss is often unclear. This, I would think, would have been evident in all the blood work you've had done, however.
There is also the possibility of Isaac's syndrome, a rare condition which could fit the profile your symptoms create. It is a relatively benign condition but can cause considerable discomfort.
While I suspect your problem is not psychosomatic, it has been suggested by several of the doctor's you've seen, so should at least be ruled out along with the various physical possibilities. It was suggested you seek out a good psychologist, and that would be appropriate, since it would be a shame to miss this if, in fact, this is at the bottom of this problem.
Neuromuscular disorders, while well classified, are generally difficult to differentiate and diagnose. You've had a remarkable number of workups with no conclusive results. I would suggest you follow up with your "favorite" neurologist since he seems to be the anchorman in all this and has a good background. You'll probably need to be followed for some time before this is diagnosed concretely. Meanwhile, don't let the possibility of psychosomatic basis, however remote, be left behind. Whatever gets you to the solution is going to be worthwhile.
I hope this is helpful. Good luck to you.