Do I have MND?

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Sunandhana

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Hello everyone,

I am sorry for this lengthy post.. i do not know where to turn for help, other than this forum.. I am now 35, female, from india.. In 2019, I started feeling a mild crawling sensation in the thoracic region of my spine.. It was present almost all days, but the frequency and intensity was less.. It was around the same time I randomly had a master health check up.. I was diagnosed with an underactive thyroid and also had vitamin d deficiency.. I started having thyroxine immediately and still continue to have.. My TSH is always normal and under check.. vitamin d also turned normal after few weeks of supplements.. in the same year mid, I started having left hand and leg weakness.. I have to hold on to some object tightly with my left hand, in order to fall asleep.. that was the only way I could describe my weakness, as that was the only problem I had, that I had to hold something tight to fall asleep.. I was otherwise very active, doing exercises, doing all household chores and working full time..

In mid 2019, I got pregnant.. had a C-section in May 2020.. had few complications after delivering the child.. four months later, I was diagnosed with pancreatitis, an almost life threatening condition.. I caught it early luckily and survived with treatment.. to cure my pancreatitis, I had to remove my gall bladder.. I don't see any symptoms of pancreatitis anymore.. when all these were happening, my left hand and left leg weakness was still there, but again manageable.. no prominent twitching until this stage.. except for the crawling sensation in spine.. and except for occasional eye twitching.. couple of times I had twitching below the breast bone between the ribs.. the exact words 'twitching' didn't strike me at that time.. I told my gynaec that I could feel something moving between the ribs, when I was only 18 weeks pregnant.. the doctor said it is highly unlikely to feel the baby near the rib so soon..

It was only after my gallbladder surgery, I started having widespread twitching all over the body.. my left hand and leg weakness got worse.. it spread to the right side too.. I am unable to do any exercise nor household chores as I was before.. I couldn't continue my job.. I have engaged a caretaker for my child.. my grip strength is very poor.. spine crawling intensity increased. I had some cell phone vibration-like feeling in chest every five minutes.. it was clearly unrelated to acid reflux.. but still I was being treated for acid reflux believing it to be so.. I started having similar vibration in throat and ear.. my chest muscles became very tight.. i had severe muscle spasm in my head, throat, nose and jaw..I described my twitching feeling as something vibrating, to all the doctors I met.. may be that's the reason none were clueless as to what I was referring.. the word 'twitching' was unfamiliar to me then..after several visits with my gp, I went to an ortho to check if my hand and leg weakness was due to weak bone.. I went to an ent to check my throat and ear.. went to a gastro to check on my chest vibrations.. went to a rheumatologist too.. I was being cleared of any abnormalities in all the departments. every report blood work, MRI of brain and spine, autoimmune labs were all normal.. I was randomly prescribed with many types of antidepressants, anti-psychotic drugs, gabapentin, pregablin, amytriptyline, multivitamins, vitamin D, b12, ginkgo biloba etc by various doctors.. they all unanimously said it is all in my head.. I have had all of the prescribed meds in the prescribed manner but in vain.. my symptoms progressed..

It was only in Feb 2021, I heard about als. This is when I noticed extensive muscle wasting in the left palm and sole of left foot.. I was unable to sleep at night due to dry mouth and tight throat.. I had to take a mint candy to soothe and to get sleep.. my saturation is always good, but I have strained breathing especially at night.. I started visiting a renowned neurologist..I clearly explained that I have body wide twitching.. upon 4 follow ups and one nerve conduction study, he too couldn't find any clinical weakness or neurological issue..all my reflexes were normal.. I was asked to continue taking coq10, gabapentin, vitamin E.. these drugs did not improve my symptoms.. he referred me to a dietitian to check for malabsorption.. the dietitian cleared me of any malabsorption and referred me to hematologist to check if there is any blood disorder and to get a fresh perspective.. hematologist took few tests related to his area and cleared me from his purview.. again went on to consult two more neurologists and they were also of the same opinion.. none of them felt I needed emg.. I insisted one of them that I want an emg.. he only tested a sample of two muscles and it was absolutely normal.. that's about the hospital visits..

I hear that als twitching will be localized.. but mine is body-wide.. I cannot name a place where I don't twitch - back, hands, legs, chin, eyes, ear, throat and what not.. it has become much more intense.. it looks scary to me.. so the symptoms are there for quite sometime like almost two years now.. but I am still able to walk and I am on my own.. I cannot do any work for more than 5 minutes and become extremely fatigued.. my muscles feel very weak as if somebody should massage them always.. my chest expansion is poor probably due to weak muscles.. throat is tight for the most part. as for my voice I notice very little difference.. it has turned little feeble and I have to strain a little, to sing for my child.. otherwise voice is fine..

I have all the classic symptoms, muscle twitching, spasms, wasting, tight chest and throat which may be tending towards bulbar symptoms.. but clinically nothing found.. I could clearly see that I am not the same what I was two years back.. I could not even hold the phone for a long time to type this out.. I have to take breaks.. I dread I have als, though the doctors don't feel the same.. I feel my symptoms are not paid attention to.. it is probably because I could still walk and talk and go on my own to doc visits.. many random people that I see, tell me that i don't have als.. if I had so, I would have been in the wheel chair by now and probably paralysed for the most part.. also in india, there is no much awareness about this particular condition.. there are very few cases being diagonosed.. I gave up on visiting neurologists believing I am only going to be prescribed with the same gabapentin and antidepressants.. if it is als, anyway there would come a time it would be obvious to the doctors.. I do not know where else to look out for help, other than this forum.. am I tending towards the most dreadful diagonosis?.. is it some form of slow progression..

I sincerely wish to believe that the doctors are right and I am wrong.. but am unable to do it.. because if it is not als, I should have been better by now.. something should have worked or I would have gotten an alternate diagonosis by now.. if I had seen the least improvement in my health than where it all started, I would have felt much better.. but the symptoms are only getting worse.. that's the reason am really worried..

Once again sorry for the length of this post..
 

affected

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I'm sorry you are experiencing so many concerns.
You don't actually have a single classic symptom of ALS which is muscle failure.
All these other things are not ALS related because there is nothing found clinically and even if you were very slow progression there would be.
Try reading here, then ask your doctor to help you with your fears as that is something that can be treated.
 

lgelb

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Gabapentin and pregabalin are sisters, so I certainly hope you are not taking them both and in the absence of nerve damage, would question taking either.

Amitriptyline and some of the other agents you mention, though not sure what you still take, can also cause some of the issues you mention, like vibration and weakness. I would consider tapering off everything with a GP's help and seek out physio. However, as Tillie says, there seems no resemblance to ALS.

Best,
Laurie
 

Sunandhana

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Thank you so much.. the article is very helpful and am a kind of relieved now..
 
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