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Complete and total frustration just want to scream and cry and for someone to listen

Please bare with me on this it’s gonna be a long one. I posted on here ages ago, unfortunately, my email address was hacked couldn’t remember my password and just had to access it for a while as an outsider, so to speak. Anyway, I decided to set up a new account in order to be able to at least ask a few questions when I can. I have had ongoing problems for well over 18 months now. Started with trigeminal neuralgia that resulted in facial numbness that spread down my neck and back, the numbness never went completely, but sometimes is more obvious that others. Since then I have had vertigo, spent weeks ill with it and other problems, new neuropathy in my hands which causes severe pain, numbness and pins and needles. I have more symptoms but to list them I would literally be here all day, such as balance issues, tinnitus, which is a new one. I am currently having trwatwmt at the chronic pain clinic for pain resulting from failed back surgery but after weeks of problems went in to see the gp today. I have in the past had several clear MRI scans, negative LP which is all good news, all good except for the fact I don’t really have a concrete answer. Ms came up in the very beginning based on a physical examination alone and it was expects that tests would follow suit, but to no avail. I was referred to an ms specialist as the neuro I was under was so sure something would show, the ms specialist was nothing short of rude and dismissive. It wasn’t as if i had asked to be referred to him. Twice I saw him and twice he said he did t know what was wrong with me, then in letters to my go said, my symptoms were highly suggestive of ms, but my test results did not support it. Fair enough, let’s see what it is then…nothing, brick wall! I will see you in 12 months. My angst was that I had three children two below school age but attended preschool and one that needed to cross town to get to school and most days that was down to me. Except most days last year I was out of action with severe fatigue and numerous other symptoms which affected coordination and balance. With this I asked for a second opinion, someone closer to my home, who would perhaps look a bit more diversely. He seemed great listened, ruled out anything functional and said he thought it sound like migraines. That the numbe bits and neuropathies were mini auras. Great lets treat that, but one question, why don’t these auras go away? Why do I still have them 18 months down the line? When his letter arrived I didn’t read it properly as I took on board what he had said, then after a few months I found it again and on reading it, realized that he had re jigged my symptoms to fit his dx, not what I had actually told him. A few weeks ago I had sinusitis, and a week or two after started with the usual familiar symtoms of fatigue then came the vertigo that put me in bed, the neuropathies started and I finally ended up with a flare il of trigeminal neuralgia which affected my vision. I went to the gp, a different one to normal, who poo po’d the migraine theory, rightly or wrongly and sent me to the eye hospital. All was clear for neuritis but she wanted me to have nerve conduction tests for the ongoing problems with my hand. I went to the gp today as I had forgot to mention this last week when I went for more analgesia, and mentioned about the new numbness now in my left hand too and tinnitus. He seemed dismissive. I am not sure whether it was because I had only seen his colleague last week or not. The letter from the eye hospital hadn’t mentioned the nerve conduction tests, so it made me look like I was making it up, but I know what I heard, and as an ex nurse I am pretty in the all with such things anyway. I just feel like I am being made to feel neurotic. I don’t want it to be ms, but I so want some kind of answers. All blood tests have come back normal apart from a slight positive ana, which I was told was nothing to worry about. The tinnitus is driving me to distraction, but nothing was said on both occasions this week or last. I am feeling so fed up today I could scream! Sorry it’s you lot that are bearing the brunt of this, but I know I am not alone in this situation and there are probably quite a lot out there like me. Thanks for the opportunity to offload but sorry for the loooong post. S :-/

Apart from the doctors being dismissive, your symptoms sound similar to mine. I have severe numbness in my legs resulting in reduce mobility, so this might be why I got to the right people sooner. I am right there with you regarding the frustration, but even if you are highly likely to develop MS it could take years before those lesions show up on an MRI. I have one lesion in the c5-c6 area of my spine as well as developing TN. It sucks to have all this crap going on and have no definitive answers though - do you have no diagnosis whatsoever? My neurologist is an MS specialist and she offered me a diagnosis of CIS (Clinically Isolated Syndrome) and said it was “Watch and Wait” in regards to MS.

Perhaps just get the symptoms treated and whenever a new symptoms crop up speak to your GP. Honestly, I know how it is, I am relieved and yet frustrated at the lack of MS diagnosis, but neurological problems are not easy to diagnosis and I am not sure I want to be treated for something I might not have…

Do you have a support system? Perhaps speak to a trusted healthcare professional about your healthcare team? One of the things I have found is important to me is knowing and trusting my doctors, nurses, physios etc.

Hi Claire, Thanks for your reply, I thought I did up until recently. When I went to the gp last week she asked me how my headaches were. I asked her what headaches. I don’t get them, I get neuralgia in y eye np but not headaches perse. She then concentrated as if the migraine theory was gospel. When I went back today to see this other guy with the stuff I had forgot to ask for last week, he again asked about my headaches and I had to repeat myself. When only a matter of weeks ago he had said that it was no way anything to do with migraine. I sort of felt like ranks had been closed down. My only option now is to wait until this new batch of analgesia for my back runs out and go back for more, and if anything new transpires mention it, but until such a time just wait for the next neuro appointment which could be anytime between November and February next year. Luckily for me, my eldest daughter goes to secondary school, so the traipse across town will cease, but I will still have the school run three times a day until,the year after when my youngest startes full time school… I think one of my frustrations has been that if he thinks it is migraine then why has he not prescribed a tablet that will stop it I. It’s tracks. He seems hll bnt on breaking the cycle with sleep as lack of it he thinks migh be the cause. So I am on two types of tablet, topiramate and amytryptilline. But still the symptoms still keep appearing. I wouldn’t be so passionate about getting to the bottom of this if it wasn’t so debilitating, and you will know exactly where I am coming from here, if it were one or two sensory problems that were a bit of a concern but not really affecting my everyday life it wouldn’t be such an issue, but, it’s the fact that I can end up floored at ten in the morning just from getting the kids up and at it, dropping then at school and coming home again. I hope I get somewhere soon, but I feel like doors are just starting shut in my face rather than continue to help. The only positive is that the gp agreed to sending me for nerve conduction tests as he had to admit it wasn’t right to have numb hands and neuropathic pain. Arrghhhhh! S x

Hi there,

I totally get where you are coming from. You tell a neuro what’s going on, only to find that they conveniently forget half of what you told them because it doesn’t rhyme with the diagnosis. Then when you get to the next neuro you have to explain it all again. So scream as loud as you want on here. We understand.

I have had one episode that seemed to fit trigeminal neuralgia and one where I had the room spinning when I got out of bed in the morning. Other than that I get pain, numbness, tingling and weakness in muscles. I’m interested in your post because you talk of both hands experiencing symptoms together. I get this in both hands and feet, and after EMGs they at least identified small fibre neuropathy (sensory nerves) plus I have one motor nerve that has given up the ghost in my foot. What I’m trying to figure out is how I can have hemicorporal symptoms as well that seem closer to MS type symptoms than peripheral neuropathy, unless I’m unlucky enough to have two conditions.

It is very important that you get the nerve conduction tests done, because this might allow them to either assess or rule out whether peripheraI neuropathy is at play here. I think peripheral neuropathy can also bring about trigeminal neuralgia. Dizziness/ loss of balance can also occur when there is an attack on the automatic nerves. Be aware, though, that nerve conduction tests may not always bring up damage to the small sensory nerves, because the equipment is not generally precise enough to measure it. On my first EMG only the motor nerve showed, and I was then sent to a major hospital which has a whole department devoted to EMGs, where they were able to pick it up.

Good luck with your tests and let us know how you get on.

Astro x

That’s for that info Astro, it’s a massive help! I have a feeling the conduction tests won’t be as in depth as I need as he mentioned they are done in the community setting by someone called medscape I think. I had conduction tests done right at the very start of all this, but tat that point in time I didn’t have much other than the numbness in my face. But I am very interested in what is picked up with my hand. There is obviously something at work and I think the only reason the new neuro hasn’t carried out these tests on my hand since, is because it wouldn’t fit hi hypothesis of the neuropathy being down to an aura. Hopefully I won’t have to wait too long. My husband dealt with a lady who came in as a patient to his dept, that does these tests, and who works at our local clinic, which is where they do the nerve conduction tests, so hopefully, one good turn will deserve another, if he looked after her well enough, that is lol. Thanks again! S x

That’s for that info Astro, it’s a massive help! I have a feeling the conduction tests won’t be as in depth as I need as he mentioned they are done in the community setting by someone called medscape I think. I had conduction tests done right at the very start of all this, but tat that point in time I didn’t have much other than the numbness in my face. But I am very interested in what is picked up with my hand. There is obviously something at work and I think the only reason the new neuro hasn’t carried out these tests on my hand since, is because it wouldn’t fit hi hypothesis of the neuropathy being down to an aura. Hopefully I won’t have to wait too long. My husband dealt with a lady who came in as a patient to his dept, that does these tests, and who works at our local clinic, which is where they do the nerve conduction tests, so hopefully, one good turn will deserve another, if he looked after her well enough, that is lol. Thanks again! S x

Hi there, I think the doctors hate to see me coming - one actually joked about it !

My first MRI was done in 1991. It was clear as was LP and nerve conduction studies. I had l’hermittes. It went away and was blamed on radiation treatment I had in 1990.

Roll on 2005 to numbness on left forearm. Clear MRI again. Numbness went away. Roll on 2008 more numbness plus leg weakness and severe fatigue. GP said it was stress and cant be anything neurological as MRI in 2005 was clear. In 2010 started to trip over my right foot. Saw a neuro in 2011 had MRI and one lesion was seen C4/C5 area. Radiation from 1990 was blamed again

Saw another neuro who thought ms was the culprit and that I had a benign type since 1990. He did not give me an official dx as LP was clear and MRI didnt have enough evidence. Still he disagreed with the radiation theory.

Ayway the first neuro said that the radiation had effected the spinal cord and with time because of this damage has aged quicker than the rest of the cord. In the same way skin which has been damaged by the sun will agemore quickly.

He said that he has a patient in his forties who now has neuro problems because he damaged his cord when he tried to hang himself when he was in his 20s.

I had no symptoms neck up which is also why he has ruled out MS.

In a way I still feel in limbo as the second disagrees with this theory.

I cant suggest what else you should do. Neurology is a guessing game!

Moyna xxx