Hi everyone, and thank you in advance for your patience whilst I try to explain my situation. I am by no means asking for a diagnosis, I am looking for the next steps and a little bit of guidance.
I'm 52, female, UK. In Nov 20, I started experiencing some resistance getting up from a seated/crouching position in my left hip. GP diagnosed bursitis and off I went with physio and Naproxen. Approx 5 weeks later whilst out walking, I began to experience excruciating pain in my hips and lower back. Back to GP and was sent for a hip xray, all good, just normal wear and tear. Bloods revealed slightly low B12 for which I was given cyanocobalamin and my thyroid was borderline underactive. I am now on 50mg of Levothyroxine. I then began to experience, what I can only describe as a clunking sensation when swallowing. That kind of feeling like when you drink too fast? I also started with muscle cramps and twitching in my whole body, including scalp. One evening whilst watching TV, my whole body felt like I had ants crawling all over me and I felt, weird. My husband tried to help me up to get to bed and by the time I got up the stairs, my legs had gone into incontrolable spasms. This episode lasted around 25 minutes. I was fully conscious throughout. I went back to my GP who referred me to a neurologist, he examined me, brisk reflexes, slight clonus and sent me off for a MRI of head, neck and spine. He suspected some kind of myopathy, however the MRI came back clear (May 21) . It was such a relief, he advised me it was muscle tension through anxiety. The pain, twitching and cramps continued along with difficulty in my right shoulder. It felt as if it was coming out of the socket. Back to my GP who diagnosed Frozen Shoulder. At this point I expressed my concerns at possible MND. She said whilst she couldn't say it wasn't it was unlikely. I went to see a rheumatologist as all of my joints had started to crack and my frozen shoulder problems persisted. I had lost a huge amount of range in my arm. He looked back at my bloods and examined me and said he could find no evidence of connective tissue disease and sent on me on my with with a fibromyalgia diagnosis (July 21). My symptoms continued, my swallowing was becoming more challenging, no choking episodes or inability to eat and swallow but this clunking sound was happening more and more and then I started to experience the sensation of a marshmallow lodged in my esophagus. I was referred for a Barium Swallow which revealed Esophageal Dismotility (Nov 21). The symptoms, clicking of joints, popping of muscles, cramps, twitches and issues swallowing continued so I went private to see another neurologist. He took one look at me after I explained my symptoms and he said, "you're worried you have MND" He went on to tell me that I didn't and that to put my mind at rest he would refer me for an EMG, this was May 22, it came back clear. It was such a relief. In January 22, I also started to take Sertraline as my health anxiety was through the roof (still is)
It is now August 22. I still walk daily, I lift small weights, although my arms fatigue quickly. I still have limited ROM in my shoulder and now the left has also started to crunch and pop, but no problems with the range. I have no clinical weakness that I can tell and none has been evidenced during my consultations.
My concerns are, my throat symptoms are progressing and my whole swallowing experience has changed significantly. Sometimes my throat doesnt seem to contract when I initiate the swallow. I am also experiencing more and more reflux after eating. My tongue has been twitching. I feel like I'm slurring although it hasn't been commented on. My twitching continues 24/7. My joint continue to crack and grind and muscles pop.
I appreciate this is one heck of a read and I am genuinely sorry to take up so much of your precious time if you have got this far.
I am now at a loss as to where next. I have been a visitor to this site for around 6 months now and it has taken me a lot of strength to post here.
I would appreciate any input from Bulbar PALS in terms of your symptoms/diagnosis.
On a separate note, you're such a beautiful and courageous community. The humour that is shared between you all given what you are living with is truly inspiring.
I'm 52, female, UK. In Nov 20, I started experiencing some resistance getting up from a seated/crouching position in my left hip. GP diagnosed bursitis and off I went with physio and Naproxen. Approx 5 weeks later whilst out walking, I began to experience excruciating pain in my hips and lower back. Back to GP and was sent for a hip xray, all good, just normal wear and tear. Bloods revealed slightly low B12 for which I was given cyanocobalamin and my thyroid was borderline underactive. I am now on 50mg of Levothyroxine. I then began to experience, what I can only describe as a clunking sensation when swallowing. That kind of feeling like when you drink too fast? I also started with muscle cramps and twitching in my whole body, including scalp. One evening whilst watching TV, my whole body felt like I had ants crawling all over me and I felt, weird. My husband tried to help me up to get to bed and by the time I got up the stairs, my legs had gone into incontrolable spasms. This episode lasted around 25 minutes. I was fully conscious throughout. I went back to my GP who referred me to a neurologist, he examined me, brisk reflexes, slight clonus and sent me off for a MRI of head, neck and spine. He suspected some kind of myopathy, however the MRI came back clear (May 21) . It was such a relief, he advised me it was muscle tension through anxiety. The pain, twitching and cramps continued along with difficulty in my right shoulder. It felt as if it was coming out of the socket. Back to my GP who diagnosed Frozen Shoulder. At this point I expressed my concerns at possible MND. She said whilst she couldn't say it wasn't it was unlikely. I went to see a rheumatologist as all of my joints had started to crack and my frozen shoulder problems persisted. I had lost a huge amount of range in my arm. He looked back at my bloods and examined me and said he could find no evidence of connective tissue disease and sent on me on my with with a fibromyalgia diagnosis (July 21). My symptoms continued, my swallowing was becoming more challenging, no choking episodes or inability to eat and swallow but this clunking sound was happening more and more and then I started to experience the sensation of a marshmallow lodged in my esophagus. I was referred for a Barium Swallow which revealed Esophageal Dismotility (Nov 21). The symptoms, clicking of joints, popping of muscles, cramps, twitches and issues swallowing continued so I went private to see another neurologist. He took one look at me after I explained my symptoms and he said, "you're worried you have MND" He went on to tell me that I didn't and that to put my mind at rest he would refer me for an EMG, this was May 22, it came back clear. It was such a relief. In January 22, I also started to take Sertraline as my health anxiety was through the roof (still is)
It is now August 22. I still walk daily, I lift small weights, although my arms fatigue quickly. I still have limited ROM in my shoulder and now the left has also started to crunch and pop, but no problems with the range. I have no clinical weakness that I can tell and none has been evidenced during my consultations.
My concerns are, my throat symptoms are progressing and my whole swallowing experience has changed significantly. Sometimes my throat doesnt seem to contract when I initiate the swallow. I am also experiencing more and more reflux after eating. My tongue has been twitching. I feel like I'm slurring although it hasn't been commented on. My twitching continues 24/7. My joint continue to crack and grind and muscles pop.
I appreciate this is one heck of a read and I am genuinely sorry to take up so much of your precious time if you have got this far.
I am now at a loss as to where next. I have been a visitor to this site for around 6 months now and it has taken me a lot of strength to post here.
I would appreciate any input from Bulbar PALS in terms of your symptoms/diagnosis.
On a separate note, you're such a beautiful and courageous community. The humour that is shared between you all given what you are living with is truly inspiring.
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