Awaiting diagnosis

Hi I’m fairly certain i have MS. I am a 43 year old male. Symptoms started two months ago. I almost fainted 3 times in one week. Bloods and heart investigations showed nothing. 6 weeks after that i developed pins and needles in hands - thought it was carpal tunnel. One week after that i developed pins and needles in legs. I went to my GP - did Calcium, B12, Thyroid etc - nothing. Suffered from extreme tiredness - like nothing i’ve ever felt before- and really poor appetitie for several days and its still not back to normal. The exhaustion lasted 5 days but i remain tired, even after a good sleep although they have been few and far between lately. In the last week my symptoms continue - tingling in face, nose, a patch on my back and the paraesthesia remains in my four limbs. I feel weak and jittery this week. Some slight muscle twitching in legs this morning. Its 10 days since my GP ordered an MRI of my neck but i haven;t heard from the scan department of my local hospital. I’m worried that as this continues to progress its doing more and more irrepairable damage to my nerves. As for my mood, I’m terrified. I have a very demanding job, a big mortgage and two young kids. I would be very grateful for any advice. Best, Alan

Hi Alan, and welcome to the site :slight_smile: It’s very scary, but it honestly could be a load of things causing this, most of which are treatable. So, yes, MS may be one of the possibilities, but it could be a virus or infection (which fits well with the fainting and the loss of appetite), migraine (I know it sounds crazy, but it could be, even if you don’t get headaches), a deficiency that hasn’t been tested yet (e.g. magnesium), Hughes Syndrome, stress, and probably lots of other things too. Even if it is an attack of MS, it would be your first. That means it’s a CIS (clinically isolated syndrome). And that means that there is a good chance that it won’t ever happen again. Let’s deal with the progression fear though: MS & MS drugs don’t work like that. Getting a diagnosis NOW won’t change anything. People who have RRMS (relapsing remitting MS) have attacks where the MS causes nerve damage, the body works hard to repair that (usually imperfectly unfortunately) and the person recovers (to varying degrees). The only thing that can stop this once it’s started is time. Steroids can speed up the process, but that’s all they do. DMDs (disease modifying drugs) help to reduce the number of times MS becomes active like this, and to reduce the strength of the attacks when they happen, but once it’s started, it’s started. People with PPMS & SPMS (primary and secondary progressive MS) have a type of MS which gradually advances, sometimes with sudden new symptoms that don’t get better. The speed of this varies, but it tends to be slow and steady, taking years rather than weeks. It also plateaus from time to time, and for some, permanently. It is not treatable at the moment. So let’s say you are having an attack of MS. Other than rest, avoid stress & eat healthily, there is really nothing you can do. You have to let your body deal with it. You have to try and be patient. If you are in a very demanding job, then I bet you are also used to being in charge. So accepting that you aren’t in this instance is going to be very very hard. But worrying about it is going to do more harm than good. The good news is that there are some excellent meds around these days so we don’t have to put up with pain and difficult paraethesia as we once did. There are also existing and new DMDs coming through that are highly effective. On a more practical slant: give the hospital a ring. Sometimes letters do get lost in the post or sent to the wrong address :? Karen x

Hi Karen thank you for your reply, which is very helpful. My GP thinks that a prolapsed disc in the neck is more likely and I’m sure it is but i dont have any pain and the tingling is pretty much all over my body now. If this is a ‘first attack’, how long do they last? The tingling started in my hands about 5 weeks ago, although that was mild at first - it has got gradually worse in the last two weeks, apart from the fatigue. Thanks again for your support. Much appreciated Best, Alan

A prolapsed disc is definitely a possibility - let’s hope so. MS attacks/episodes/relapses can last anything from 24 hours to a year or even more. They tend to vary widely, like everything in MS. My shortest has been a single day. My longest has been about, actually I’m not sure! Last year was either one long relapse or lots of shorter ones. The most common length of time mine last for is 3-4 months. The relapse that led to my diagnosis started with my legs tingling from the knees down. It spread over the next week or so, and the the whole thing got worse over the next month or so. Then it gradually got better and I was completely back to normal in about 3 or 4 months. (This was in 1997.) Hopefully whatever’s happening to you has reached its peak and will start to recede soon. Kx

Hi Alan Un fortunatley I have been waiting for dx for over 3 years MRI was abnormal but not necessarily MS hardening of the arteries and been having mini strokes not that I noticed abnormalities in spine neuro thought MS my gp sent me to MS specialist who looked at mri and LP results which was normal and said after 2 minutes nothing to me indicates MS in my area unless you have so many lesions and a possitive LP you will wait forever for a dx I have spoken to people like me who have been like this for 10 years+ To be more positive after a lot of juggling I have found meds that make my pain bearable but not really helping fatigue in legs and awful buzzing but have learnt to accept it at the moment I will insist for further MRI sometime soon though. But do not rely on dx everyone here can help and understand you are NOT alone. Jan x

Thanks Karen and Jan. Jan - Sounds terrible to be left without a firm diagnosis. I am of course hoping nothing shows up in my MRI but then I guess I’ll need to wait months for a repeat MRI or my symptoms to return. My best wishes to you all Alan

Thanks Bec Just phoned the MRI department. They received my GPs referral but as its identified as ‘routine’ it will take up to 5 weeks for my appointment. I’ve e-mailed my GP to tell him i think it may be more urgent- worth a try, especially as I dont know what I’m dealing with here. As Karen outlined, it could be anything and I guess even a tumour which may support the need for earlier diagnosis and intervention. Best, Alan

Diagnosis of neuro symptoms is a process of hoop jumping, of elimination. I had disc trouble in my neck in the early 90’s and was pushed about from pillar to post, living on NSAIDS and it was two years before they found it was disc trouble. All that had happened was my arms went numb if I lifted them above my head and I looked up at them! Then I had muscular spasms in my back, headaches, Trigeminal neuralgia, parasthesia, pains down the ulnar nerve … all sorted when I had a fusion of C5 and C6. Now I have had two relapses in 1 yr and a symptom du jour since for a year - this week’s is toes dipped in ice and a misbehaving forefinger. I’ve had Head and Neck MRI and all found ‘normal’. Due nerve conduction studies etc later this month. The relapses had numb to the knee, hideous neuropathic pains around and about, odd things happening to the soles of my feet, twitching fingers and toes and buzzing in odd places, plus beetles running round on my skin which still happens sometimes as the symptom du jour. The wait goes on. Mainly for a full spinal MRI, which I can see I may have to source myself. They’re right though. Stress can trigger an attack: I meditate and drink a lot of tea. We’re all here for you, and we all understand what you’re going through. BTW I’ve waited 12 weeks for my first neuro visit. 10 weeks after that for the head MRI. Next visit I waited three weeks for the neck MRI and my nerve conduction has taken six weeks. Nothing happens fast in neuro-land. Like orthopaedics, where they make people 10 weeks for bad backs cos most prolapsed discs get better in that time themselves (I was told that by an orthopaedic surgeon) they do get around to everyone in the end.