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Help..desperate for help with possible muscular condition.
Hello,
I hope I am ok to post this, new member. Desperate for help with what I am suffering..will try and keep short.
I am suffering with extremely uncomfortable muscles, legs are wobbly to walk, can’t do much standing, strange chest sensations with feeling of breathlessness, my eyes often feel strange (like not working properly), weak strength of urine flow, on/off laboured swallowing, can’t always open jaw fully, and often can feel little lumps under my skin. Lots of other little things.
Sometime ago I was diagnosed with Chronic fatigue syndrome, something I always questioned as my problems do not behave in the way CFS sufferers say. Also many of my symptoms do not fit CFS at all. However, due to that diagnosis dr’s do not take anything I report seriously, no support, help or interest.
Recently I had a scan contrast. I have had in the past without issues but this time my muscles and breathlessness and mobility have been severely affected within hours after my scan. Go not interested, says allergy. Makes no sense as been ok before.
My father was recently diagnosed with polymyalgia/polymyitis (this alerted me somewhat as can be family genetic).
When I search my main symptoms it comes up with myasthenia gravis. I’ve no idea anymore, all I know is my life in a bit of a mess suffering all this and just left to it.
Can anyone tell me if my symptoms represent a muscular / neurological condition, how can I get the right medical specialist (and which type) to help, even take seriously?
Any help would be so appreciated as I’m at my wits end.
Many thanks in advance,
L
Lilly08
Participant
Posts: 0
Joined: 08/04/2021Reply To: Help..desperate for help with possible muscular condition.If you have a muscular dystrophy or a Myositis it will show on a routine CK blood test as will be raised.
What I would do is call your doctors and demand a appointment.
Tell them you are sure you have a issue and you want the following tests.
CK blood test to look for muscle damage
Liver function test, MD leads to high liver function results
Kidney function test, high ck can damage kidneys
White blood cell count, white blood cells attack good muscles in a myositis
These are all routine blood tests you can have at a gp practice with results next day.
Don’t take a Gps buklsh@t if they don’t take you seriously raise it with the practice manager. Most have never seen a MD or myositis patient
If you happen to have some spare cash and are really need a answer fast, get a private mri of most week effected area as if either a md or myositus it will show muscle loss/damage. Can get them next day if you look around,I paid 1k for mine but on one limb looking £250 to £600.
Also a myositis is not inherited so you would not of generally got it off your father. A MD is inherited, MD and a myositis are commonly misdiagnosed for each other.
Reply To: Help..desperate for help with possible muscular condition.Hello and welcome to the forum. Your symptoms could describe a whole host of conditions, and not necessarily one. You could have a ‘main’ problem which causes other difficulties, or there may be more than one condition co existing with another.
May I say therefore, that I support Joe’s advice. Go back and demand an appointment and do not take no or Covid for an answer. The blood tests are simple and very useful, and not all that expensive. If they will not do anything, demand a second opinion. Try and get a referral to a neurologist whom I am sure will be able to diagnose your problem.If that is denied then there is always the General Medical Council, BMA or other bodies that will help you.
Please do remember we are here to help and support. Do come back to use if you are not making progress or to tel use how you are doing.Mike
So many love songs, so little love.
Reply To: Help..desperate for help with possible muscular condition.Get an appointment ASAP.Then refuse to leave until tests granted-and record conversation.
My sisters husband did this over a different issue a few years ago. It worked. If they call police fine it will make local news.
NO VIOLENCE from you stay in the right.
Good luck.David
Reply To: Help..desperate for help with possible muscular condition.It’s sad the state of some GP practices is like this, some GP surgery’s are paid a bonus to keep referal rates to hospitals down, that and vaccinations and flu jabs in which they are paid around £10 per a injection, and now for covid jabs at a practice they are paid around £12 per a injection.
GP doctors are also part self employed. I had study loads regarding NHS and GP practices since my illness as I found it strange that I could not get referred and trying to book a routine appointment is hard and they put you off…..
I am not a anti vaxer and my son is vaccined However the practice called me 10 times a day to arrange my 4 year old son a seasonal flu vaccine when there is near to zero chance of him being adversely effected by flu at his age, when the receptionist finally got through to me and I told her my son is not having it she shouted 10000s children die each year which is a totally incorrect and informed me she will be telling my doctor.you see its a business unit for profit
Experts in dishing out annual vaccines and also experts in delaying or not referring you to a hospital.
Also NHS specialists, its funny when I got referred to see a neurologist they said it would take 3 months, so I paid £300 to go private at spire…. Guess what same neurologist I would be waiting 3 months on NHS I see in 5 days for £300. Most specialists do side line business its all profit driven
My father keeped going to the doctors about a issue and they fobbed him off most the time. When he lost weight rapidly they finally reffered him…. He died shortly after as cancer which had spread everywhere, I was just a kid and he was my hero.
My advice to anyone who has reall medical issues is to call 111 and go through the medical diagnosis procedure in which will either tell you to go to the hospital or a doctor from gp practices will have to call you back within 3 days and reffer you if needed.
If its really serious failing that just cut out the practice and go to A&E, I took my son a couple of times
Reply To: Help..desperate for help with possible muscular condition.Sorry, but I don’t know what bbcodes are and do not know what the other tabs do exactly such as ol, b-quote, etc. Maybe someone could teach me?
Anyhow i’m not sure if my post is relevant to this specific thread, but I understand your frustrations.
I’m in a country where the GP or family physician as they call them over here, just want to see you very quickly without properly listening or caring for your issues because time is money. I am sad to hear of what’s happening to you and can empathize because I’m kind of in the same boat. I’m young in an overall sense, 49 years and never had a medical problem in my life until last year. To make a long story short, I had a head injury with complements to an paranoid schizophrenic which left me with 5 fractured facial bones and a numb face. After, I began to feel pain in my sacrum and my near vision worsened drastically. The sacral pain lessened after a few months and became tolerable. Life was still good but then COVID came. After receiving the vaccination I not only developed a condition called small fibre neuropathy but pain and numbness beginning in my feet and then ascending up my body. Because I worked out regularly, I had a good degree of muscle bulk. At first,I didn’t notice the muscle atrophy but when I did, it progressed very rapidly. I was in pain but with differing degrees and areas with respect to the time line. I had a full workup on the hospital but the physicians didn’t even do a physical exam by palpation of the musculature. My muscle atrophy and wasting is advancing rapidly and I am fully disabled at this time. However, the neurologist and internist I have been seeing are literally ignoring my muscle wasting and neither are palpating my areas of concern (that would be my whole body because I’m losing muscle tissue everywhere – hands, feet, legs, arms, back, neck, etc). They are saying I have “weight loss” because I had less oral intake of food for only 1 month secondary to the small fiber neuropathy where you can develop things like constipation, urinary issues, dysautonomia, heat tolerance with decreased sweating, dry eyes, etc. But they are still reluctant to give me a general diagnosis of muscle atrophy/wasting when it’s actually occurring in front of their eyes. Over here, it seems like physicians want to do the bare minimum and dismiss actual patient concerns. My case is so unique because I don’t have why genetic issues in my family and my symptoms don’t fit neatly into this like ALS, MS, etc. My point is that I am continuing to lose muscle, subcutaneous fat and having ligamentous pain daily. I cannot hold a cell phone at times because of the pain (which is spread throughout my whole body – muscles, bone, tendons, ligaments). I’m so frustrated with the inadequate and negligent care I have received thus far.
So, I can truly sympathize with your issues. I feel many physicians are just out to make $$$ and give patients the least amount of their time.
Sorry for the rant but wanted to relate my story and see if others are having issues with their physicians.
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