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I have no answers, please help if possible.

MrBevan profile image
MrBevan

Hi Everyone,

I am sorry for the long Post. I am literally at my wits end. For the past year I have been experience a number of symptoms. The main one being tingling and numbness in my arms and legs as well as jerking, twitching and muscle spasm. This has been constant. I have had a few episodes where it will all of a sudden come on as an episode where I will shake as if I have low blood sugar and I will lose feeling in my whole body and become disorientated and dizzy. For the past few days I’ve been feeling like I’m struggling to breathe as if someone is sitting on my chest but this has been intermittent.

Other symptoms have been: dizziness, Itchiness inside head, limbs spine, Crawling under skin & like being tickled by hair, Headache After I eat, cough coming and going, Blisters inside mouth, Lymph nodes up,

Shooting pains, Numbness in fingers, toes and face

Stuff muscles, affecting mobility, Slurring and mixing up words, Nausea, Extreme pain like band around waist, only let's up on rest, Extereme fatigue, Bladder irritation, Diarrhoea/constipation intermittent amongst others.

I have had MRIs and have been told I don’t have MS and blood tests that have apparently come back clear. Despite this being debilitating doctors have given up on me and said I will learn how to manage my symptoms and actually said “you are what is called a medical mystery”. I don’t have anxiety, well I do but related to being so ill all the time. I worry constantly that I am going to die or end up completely unable to look after myself. I cry to myself often when I’m alone but have been putting on a brave face to everyone else. I can’t do it anymore.

I don’t know what to do next or what I can ask the doctors to look at that may have not been looked at before? Has anyone else experienced this? I have read that MS can often take a very long time to diagnose and people are often misdiagnosed. To be honest, it’s not so much that it could or could not be this but it’s more the not knowing and feeling like whatever it is is progressively making me worse. I cannot take this limbo anymore.

Lots of this may seem like babble but I’m probably 1. Desperate 2. Emotional and 3. Tired of it all at the moment.

Thank you for reading.

11 Replies

Sorry to hear about all your worries. I have peripheral neuropathy and take GABAPENTON which causes me to forget words but it helps the pain good luck.

Hi MrBevan,

Sorry to hear these issues - it's not an easy journey. I can relate to a lot of what you are saying and your symptoms - at the moment my issue is weakness pretty well all over including legs and arms. I like you have always been concerned about MS but again my neurologist tells me its not MS and is PN. I've also developed an annoying internal tremor in sporadic places anywhere from my lips, face, chest to my groin!! Take comfort from previous MRI that you have been told it's not MS but symptoms of PN are similar in a lot of cases. Some days i just feel like giving up but we've got to keep going!! Arrange for an appointment with a neurologist and plan to see them every 6 months for an update on your condition. The difficulty is that there is not really any specific treatments - it seems it's more hit or miss and some things work for others and not some. Something else to be hopeful of is that if your situation is not positively diagnosed then this situation could with time repair itself, but it will take time.

please keep us posted - good to hear from you.

R

Hi, you sound a bit like me. I developed numbness in my toes mid 2017, now I have difficulty walking, weak hands, arms etc. I also get vibrations, usually in my legs and sometimes fingers. Muscles are often tight and achy. Neuros have dx'd idiopathic axonal neruopathy, emgs have varied. I have lately been looking up anti-muscarinics for possible hope. Check out Winsantor wst 057, pirenzepine and oxybutynin. Best of luck to you!

There are important tests that will only be done by your GP if you ASK :-) B12 - Folate - Ferritin - VitD. If low in their ranges then many of your symptoms can be explained. B12 needs to be around more than 500 - Ferritin and folate must be at least mid-range and VitD needs to be around 100.

Docs are not trained at Medical School about Nutrition and how to supplement. Big Pharma has a pill for everything !

b12deficiency.info/signs-an...

Scroll down in the above link to read the signs and symptoms of B12 Deficiency - neurological ones come first.

peripherique profile image
peripherique in reply to Marz

Hi Marz.

I have had PN for a number of years and seem able to manage on drugs advised by my medicos.

I am really interested in what your medical training is as you are always advising people what to do ?

Thanks

Marz profile image
Marz in reply to peripherique

Hi - so pleased for you that your medications work well.

When I want to know more about a person I click onto their username - read their Profile and take a look at their Posts and Replies. I have been a member of Thyroid UK for 7 years - a forum with 90,000 plus members - where there are many experienced and qualified people. We share our knowledge and experiences - knowing full well that the GP's of today have very little knowledge about B12 or Thyroid Testing. It is a scandal. I have also been a member of the PAS Forum - where B12 is also discussed in detail. We have to take control of our own health - obtain copies of results with ranges to monitor our own health and to check what has been missed. Of course all records should now be on-line for patient access - but in many cases it has not happened.

I have read extensively and am willing to learn from others who know more than me. Happy to provide links and any further information you may require.

Have clicked onto your username too :-) Did you read the B12 link I posted above ? That is how I learned so much - reading the suggestions of others and making up my own mind about things !

Have just prepared my home for a yoga class - started teaching at 65 some 7 years ago - so I must be doing something right ! Swim miles in the summer and generally do the very best I can. My supplement basket rattles - as do I - but I do not take any prescribed meds. I have Acupuncture - Physio - massage and eat well in an attempt to overcome the issues I deal with on a daily basis.

I have Hashimotos - B12 Deficiency caused by surgery - Crohns - 13 major surgeries including spinal decompression - spinal issues and so on ....

Happy to answer any further questions you may have ... or provide links that may help ...

Just to say I'm following post

In same situation, I could have written that myself!

Let me know if they finally find something

Xx

I am 59. I know how you feel, the list is endless - mainly limbs, feet, hands are affected ( burning, prickling, cramps, shooting pains, toothache like pains in fingers) but also bottom of spine, RLS, tummy (IBS) nausea ( even being sick sometimes), dry eyes, skin on hands and feet dry and thickening and peeling, bones in feet painful, carpet burn feeling on skin, facial neuralgia, bladder burning... And of course, we are imagining it, blood tests come back within range!!!!

Anyway, I did a few things: drank more water, read a book ( can't remember the title but will find it if you want it) which recommended a diet consisting of a lot of leaves, sauerkraut, cabbage ( increase of sulphur) and a lot of offals (apparently offals have minerals/vitamins that no other meat contain). I have also diminished the quantity of fruit and nuts and beans I was eating and I have stopped drinking milk. I was also prescribed beta blockers for irregular heart beats. Anyway, I have been feeling so much better and almost forget what it is like to be in pain. I have periods of really good days or even weeks, as it is the case at the moment... On this journey, I have also found out that I am allergic to a few medicine and intolerant to some food (milk, chillies, Apple skin, almonds) and that beta blockers help.

I have also thought about the fact that when I had uterus cancer (2 years ago) the surgery must have disturbed a lot of nerves and that it affects the whole body, although I had a lot of those symptoms pre-op. I also took up yoga, tai chi and Pilates and stopped running and going to the gym (I could not do it anymore anyway).

I also came to the conclusion that it was not one condition with lots of symptoms but a few conditions ( body is aging like a car does!!!) and some are lucky, others not. I have been diagnosed at the hospital over the years with interstitial cystitis, trigeminal neuralgia, IBS, palpitations, plantular fascillitis .... giving a few of those symptoms but not explaining all of them. The shooting pains, burning feet, cramps, dizziness, nausea, RLS or skin hurting or itching have not been explained... But I do think I have a sort of fybromalgia or arthritis ( periods worse than others). I will go to the doctors to check my heart but the rest I'll try to get on with it and hope that when my quality of life is affected too much it will not be long before I depart.

What helped me a lot as well was going to a very good psychic who told me excatly what was wrong healthwise and apparently I had had a problem with my thyroid gland ( hence the thick skin on hands and dry hands) which had corrected itself and she was right, it has. She also saw all of the other ailments.... But told me my cancer would not come back... So I decided to believe her and live life to the full, when I am well anyway.

Hi folks, I`m another one experiencing these symptoms & my heart goes out to each of you, because I truly do understand what a frustrating & desperate feeling it is trying so hard to get well & constantly being thwarted. I'm at the 30 year stage. It started with a bad dose of ME & evolved into Arthritis & then Peripheral Neuropathy. I resisted going down the prescription medication route & tried every complimentary therapy known to man, until the pain from the PN got so overwhelming, I gave in. I'm now on Gabapentin, Naproxen & soluble Paracetamol. The pain is more manageable most of the time, although it does spike & recede depending on what's happening in my life. I have a wonderful GP & she has told me that the medical profession hasn't found the answer to nerve pain. I optimistically thought that if I could just get rid of the pain, I would be able to live a relatively normal life, but the reality is that I'm becoming more & more housebound. The deterioration in the last year in particular is quite frightening. I can't begin to offer advice as I just haven't been able to find a solution to what appears to be a totally mystifying & illogical condition. All I can say is that I have had to dig very deep not to let this situation totally break & overwhelm me. I find it pretty astonishing that the medical profession can't help such a serious & debilitating condition & the fact that there's nothing to see doesn't help. Hang on in there people & know that you are most definitely not alone in this experience. Try to live in the day & consciously look for the stuff to be grateful for. I'm so very sorry I can't be more constructive at the moment, but do wish you all a peaceful C`mas & a better year ahead in 2018. Warmest love to all, xx

I just read post huni sound exactly Wat I live with not nice Al syptijust same me daily nite pains sum time worse at different times in day nite x wish I new myself had help support on own struggle to not nice hun do feel you as no what it's like xxx

Hi, how are you doing? Have any symptoms subsided, gotten worse. Let us know if you can. Cheers!

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