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Magnox

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Hi, This is my first post on here :) Please accept my apologies in advance for any errors or blunders I may make while typing this in :)

I am writing on here because I am concerned about symptoms I have been experiencing for few months.

I am 30 years old, a dad and husband to my beautiful family, an athsmatic and an ex-smoker (bad idea with athsma right :/ quit back in dec last year, only smoked for a year and a half). Back in feb time I went to the doctors with some persistent aching near my shoulder bladesand feeling exhausted all the time, of which I went to get checked out as I was concerned about the possibilties of lung problems from smoking, despite it being only for a relatively short time.

The doctor did a full range of bloodwork and it came back I had an abnormal c-reactive protein level, the rest of the bloods were fine. They asked me to go back for a repeat bloodwork on that c-reactive protein test to verify, and came back 'in-range'. Doc seemed happy, so I chalked I left it and carried on as normal.

I then in March started to have severe bowel pain generally worse in the morning and better on movement, that was very sharp and intense, along with slow digestion (feeling as though food was sitting in my stomach for ages and not moving on). Went back to doctors and he did an internal examination of my rectum and said there was no lumps or bumps, or protruding piles and that it was reasurring to him to not find that, he said it could be an anal fissure, so he prescribed fybogel to try to soften the stools and said it should heal with time, and to go back in a few weeks if pain persisted.

I used the fybogel religiously and found it didn't improve the bowel pain symptoms, however the digestive transit was improved with the fybogel. I went back to see the doctor, and he said he felt it was IBS, and to continue on with the fybogel, he said the pain could be chronic anal fissure or related to the IBS.

I have lived and worked on since, and please forgive me for listing the full history of the medical stuff this year, but I though it was best to have everything down, sorry for the long read.

Now this is the bit I am truly concerned with, I noticed over the past few months when walking to work my two smallest toes on my right foot, were going numb on occasion, usually when walking to work, I chalked it up to my shoes being tight (altho they were fide fitting) or the cold, but thought it strange it was usually constrained to those two toes. I ignored this and carried on as normal, and then I noticed within a short time a vague numb feeling in/on the front of my forehead, this wasn't too bad to start but gradually increased to encompass the front top of my head as well. During this time I had gradually been feeling more fatigued and with some difficulty lifting things.

It came to a head one morning when I woke up and my wife noticed my speech was slurred and I had weakness in my right side, she called an ambulance and in A and E the doctor did his examinations, I had weakness in my right side compared to my left and my reflexes were non responsive on my right side arm and leg. The doctor said he thought I have had a small stroke and arranged a CT scan, I was moved to the stroke ward and admitted.

I had the CT scan and it showed no bleed on the brain so they arranged a MRI because they said a bleed on the brain sometimes shows up clearer on this. I went and had this done and they came back to me and asked if I ever had any problem with my vision, to which I said I hadn't, they said on the mri they found some white spots or lesions on the brain although they looked like old spots to the doctor, and wanted to do a lumbar puncture to test for ms among other pathologies. I also told them about a burning pain in my spine that I had been having, aching and weakness in my hands and arms, and pain and stiffness in my hands and fingers and joints along with muscle twitches around my body.

I consented to the lumbar puncture, and after a somewhat awkward and painful lumbar puncture I rested as instructed. I found I was sleeping loads in hospital and not feeling refreshed, the day after the lumbar puncture I found my voice was very hoarse and weak and I had a bad headache (which they said was common with a lumbar puncture) my walking was also unsteady, I had nubmness in my groin and hips which they said should pass, but I felt terrible. Over the course of the day the numbness spread to my upper body, the doctor looked confused at this and said it could be nerve irritation from the lumbar puncture.

I was told they were scheduling a potenital evoked visual reponse test in a different hospital and was discharged from hospital, pending results, and told to go back in a couple of months.

On getting home I found it difficult to do anything, felt so weak, voice kept going hoarse and weak and struggled to do the most basic tasks, my arms and hands felt weak and painful and it took me 2 weeks of rest and some natural supplements to get me back on my feet again.

I was finding that tiredness could hit at any time and my energy levels would drop. I was also suffering from brain fog, headaches, leg cramps, muscle twitches along with the other problems with weakness.

I returned to work on light duties on reduced hours, and am only just managing, some days to get through the work day.

I went back to the consultant at the hospital and he said that my evoked visual test came back okay, he asked me if I had any stress in my life and I said generally no apart from these irritating symptoms and he said that he wanted me to see a clinical psychologist, and get some joint tests, he said there was no pathology to my condition, and I have to go back in three months.

I am now at waiting for the test dates and appointment with the psychologist. I am progressivley feeling weaker and fumble with small change and objects in my hands, and keep dropping things. I have lost weight in my hands I feel like there is a lump or something stuck in my throat that feels strange after eating or drinking and my voice keeps going hoarse and weak, my fingers look gaunt and seem to have lost muscle around the palm of my hand and fingers. I am concerned this is something like als that causes muscle wastage and loss of motor function. Can anyone please give me some advice ?
 

vickim

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hmm
Did you have an emg/nvc? You did not mention it. I do not have als but I have mitochondrial myopathy which causes extreme fatigue and muscle weakness. I got my diagnosis after a muscle biopspy. Your symptoms could be anything at this stage. Have you seen a neurologist?
 

Magnox

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Hi thanks loads for replying :), I only had a visual test watching a old style monitor, with electrodes round my head, I havent had the other ones you mentioned. I havent seen a dedicated neurologist yet either, just a consultant off the stroke ward and recently another on his team. I am just scared about how my hands seem to be getting thin, loss of muscle tone, even my wife has noticed it and, my palm dips in in the center when I outstretch my fingers, my wedding ring is now 2 sizes too big for me too :( Thanks for replying, I really appreciate it!
 

vickim

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hmm
I think you need to see a neurologist. There are lots of test they do and more than likely can give you some answers. In the mean time try to stop worrying, that and fear can make you really sick. I know easier said than done but worry will not get anything resolved any faster and can cause the fatigue to worsen. Try to enjoy the holiday season, family and friends. I wish you peace.
 

kiara

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As you have been told the first thing to do is see a neuro tell him your story and your fear about having something like ALS. Unfortunately it often takes a lot of time and tests before neurological issues find an explanation and a diagnosis. I'm having symptoms from last spring, lots of tests done but no explanation found so I'm still waiting and my conditions are getting worse. You have a lot of neurological symptoms but some like numbness, brain fog and headaches point away from ALS. Try to stay positive ( I know It's not easy) because it could be everything. There's one thing we have in common: like yours my hands are getting skinny and bony looking with palms that dip in the centre. I told this to my neuro and he said my hands seem to have lost not only muscle tone but even subcutaneos fat and he can't understand the reason. Anyway I can still use my hands with no problems, I write, type, open bottles, sometimes my hands become stiff but it does not last so long. I hope you'll find an answer sooner than me.
 

vickim

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hmm
Finding the right dr is key. It took me 5 years to get my diagnosis, after 2 gps, and 2 neuros and being passed around. The 3rd neuro gave me a diagnosis after 5 months. Be patient, diligent and don't give up.
 

kiara

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Vickim I really hope I'll find the right dr too....and the right diagnosis
 

vickim

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hmm
The neuro who finally found out what was wrong with me works at a university hospital. I think they have more access to information and are willing to listen. They don't have to worry about insurance and payments. I don't know if they have anything like that in italy but you might want to check it out.
 

Tokahfang

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I'm sorry you've had such a rough time of it. Though I don't think you'll meet anyone here who has been through your specific journey, many of us have had times with a lot of questions and symptoms but few answers. Unfortunately, us edge cases can take very long time to get sorted out, and it's hard to be patient when you have a disabling condition and no name to explain it.

I am really glad you are going to keep your psychologist appointment. Our subconcious minds are capable of exaggerating or adding to whatever conditions we have, which can leave one in a situation where the symptoms you have are much worse than any objective testing can support. The symptoms our mind produces are just as real, just as disabling, but don't show up on any test and aren't consistent with the clinical signs. Psychologists can help figure out to what level our mind is doing that, giving doctors a clearer idea of what purely physical problems you might be dealing with. Neuro-psychs are particularly good. If you do have a mixed problem, mind and brain, there's no stigma to that. There's no stigma to a purely psychosomatic disorder either - they are just as disabling and real, and sometimes even less treatable. And hey, if you're completely mentally healthy, that's good for your neuro to know as well.

If I'd understood all this years ago, I would have saved myself a lot of trouble. Symptoms, whatever their source, are there to tell us something. We feel pain so that we'll know to stop doing things that injure us. In my case, in reaction to my very real and problematic underlying physical symptoms, my mind reacted with coversion disorder, which made me harder to diagnose. I pushed through and ignored that too, and finally ended up in a disassociative fugue. It didn't have to go that way. Having conversion disorder didn't mean "it was in my head" and I just needed to try harder, it meant I needed to find out what my body was trying to tell me. I think a psych that I had a relationship with, went to regularly, could have helped a lot. If I could go back in time and explain to myself one thing, this would be it.

All that said, consider the possibility of seeing a neurologist outside of a hospital setting. In my experience, the ones who work at hospitals a lot are more focused on immediate danger and not very interested in finding the complicated or subtle conditions no matter how disabling they become. Keep up with the doctor visits, but don't let them define your life. If you find you need help, assitive aids or whatnot, don't wait for a diagnosis. All those doodads that make hand weakness ok are pretty cheap and easily available, for instance. Whatever you will be diagnosed with in the future, you are already living with it - figure out how that works for you.
 

Tokahfang

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Check back for a post in moderation.
 

kiara

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Here in italy we don't need any insurance, almost all health services are covered by the State....unfortunatly there's a problem: waiting lists. I have booked an examination in the most important neurological clinic of Italy but I have to wait until the 14 of March, so i wait and hope they'll find what's wrong.
 

Annie's Phil

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Magnox, whatever you may have, it doesn't sound at all like ALS. ALS is a disease of the motor neurons which progressively die. This is manifested as loss of motor function of the muscles enervated by the affected motor neuron. As more motor neurons die the affected muscles become progressively weaker, and new muscles become affected as their motor neurons die.

The symptoms you described are atypical of ALS. I hope you are able to quickly get a good diagnosis and effective treatment.
 
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Magnox

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Thanks so much everyone for your posts :) I am truly hoping to get a diagnosis soon. Its encouraging to me that some posts also suggest my symptoms point away from als :)
 
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