@melibu

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melibu

Hi everyone :) maybe a diagnosis

My name is Melissa iv just recently realised im experiencing symptoms of MS. Iv been back and forth with doctors for over a year who all dismissed my symptoms as nothing, telling me i was depressed and fobbed me off. Recently in Jan of this year I was at work and started to get a migraine which I get a lot when all of a sudden I thought I was having a stroke. My right eye went blurry, my right arm went numb and tingly from shoulder to finger tips and my face went slack on the right side and i started dribbling. That all stopped after about 10-15 minutes except the arm. My thumb and index finger and half my palm stayed numb ( which endd up lasting 7 weeks) . I went to the doctor who fobbed me off again saying that doesnt happen with migrain and i immediatly made another appointment with a different doctor for 2 days down the track. This new doctor is amazing!! He was worried and sent me for an MRI on my brain which i had within 2 hours which showed alot on lesions on my brain including one which is 6mmx9mm. Doctor then ordered cervical and spinal MRI which came back clear and organised a neurologist appointment. Saw the neurologist 6 weeks ago who did all the general cognative and reflex tests and said he could see something in my scans right off the bat but that he needed to discuss wit the board of other neurologists in their next meeting and would get me back for the next clinic to go over tests. In the mean time iv had a lot of dead/ heavy arms, constant tingling/ full on pins and needles in both feet and knees, throbbing sharp pain in both shins and forearms and hipbones, dizziness, blurriness in my right eye, almost complete loss of apetite and constant fatigue aswell as a very overactive bladder. Saw the neurologist again 4 days ago and he repeated all the general reflex and cognative tests again and commented that my right side which is my dominant side isnt responding as well as it should to touch when he pricks it with a sharp pin or touches it. He then showed me my scan of my brain, 3 large white mass blobs which is said is very indicative of MS. He ordered a Lumbar puncture for sometime in the next 6 weeks for me. I mentioned to him i had bacterial meningitis when i was younger and he said that this makes sense considering the lesions and is lookinginto a vitamin D trial we have going on here in the Gold Coast to see whether its possible to participate but i think it may be too late as that ends this year.. so thats my story for now.. more to come in the next 6-8 weeks i guess :)

potter

@potter

Welcome to the forum I am sorry you are having such a rough time. Most of us know what you are going through. My symptoms were never that dramatic but it took me 10 years to get a doctor to believe me. You can ask any question you want here or just rant and rave, we will try to answer it and may join you in the ranting and raving. Potter

melibu

@melibu

I have spent the last 2 nights at work ( i work graveyards shift so its quiet) reading the threads on this forum and have only got about 20 pages in and have already realized that the symptoms iv been having for atleast 2 + years are looking highly likley RRMS. Every symptom i have is mentioned on here pretty much its like looking in a mirror. Its so fustrating that these doctors have been so ignorant just fobbing me off sayng its in my head!! I could have caught this so much earlier!! Dead arms, irregular body temp, constant pins and needles, numb tingly hands, sharp burning pains, headaches, migraines, blurry/ double vision, random sudden car sickness being a passenger, very hyper bladder, loss of sensitivity and reaction on right side of my body ( dominate side) the list goes on. I knew i wasnt crazy but the doctors just would not listen. Bring on this Lumbar Puncture so i can have this diagnosis done and then i can look at my options!! I want to hit this hard and fast if I get the option I feel I have been a sitting duck too long already- is this an over reaction? Or am i well within my rights to look at something as drastic as Lemtrada straigh after a diagnosis if thats what happens?

Stumbler

@Stumbler

Hi @melibu . Don't be too hard on the Doctors. They probably saw each individual symptom presented in isolation. And, General Practitioners aren't really that up on the finer attributes of MS. This is why they're "General" Practitioners and not specialists. Our bodies are also pretty intricate pieces of kit. GPs can't see inside us and have to make their determination based on blood and urine tests and what we tell them. Plus, the symptoms of MS also present in various other conditions too. This is why diagnosis can be a long, frustrating journey. But, you're reaching the end of this period in "Limboland" and you should have a definite diagnosis soon. Then it will be time to have the discussion about treatments. Make sure that you are clued up on the treatment options, specifically the Lemtrada option. Then you can be an active participant in this conversation. It's going to be your condition, therefore it should be your decision as to how best to treat it.

Sonia1984

@Sonia1984

@melibu Not being diagnosed seems to be a trend. I have had unexplained symptoms since I was 16 and was just diagnosed at 31. When I read medical records with things like Tridgemenial Neuralgia and Bladder urgency and panic attacks and hands tingling I really wonder why something neurological was'nt questioned. What really makes me angry is when due to intense headaches I request an MRI and am told I don't need one that I'm such a hypochondriac and lo and behold they found 6 lesions that were old on top of 4 additional new ones. Hit it as hard as you can Lemtrada would be my next drug of choice if the Gilenya isn't helping stop the progression.

Sonia1984

@Sonia1984

@stumbler lol I'm pretty hard on the one doctor due to the long history but my new doctor is much better!

kizzey

@kizzey

Sorry to hear you are having a horrible time with you diagnosis, it took me quite a while to finally get diagnosed. Once you have your spinal sample taken hopefully it will finally give you some answers, for me that was so frustrating not knowing. Once they had my results the started me on methlyprednisolone within a few days. I had 3 days of treatment which really helped my symptoms. This all happened very quickly with in a week, the steroid treatment has its own side effects hopefully if you have it they won't be too bad. The faster you start on disease modifying treatment the better whatever they prescribe you. It all seems pot luck where you live in the world how good the treatment you receive and how quickly. I hope you get an answer to your condition soon and hopefully it will be a better result than you are expecting. Wish you well.

Stumbler

@Stumbler

@sonia1984 , our GPs only give us a short appointment, so it's hardly surprising that they're slow in seeing the bigger picture! :wink:

melibu

@melibu

I think it all took so long as i have migraine they kept bunching the symptoms with that like a jigsaw that wouldn't fit. Until the doctor and neurologist looked at them separately and now im getting somewhere. Iv been prescribed Topamax for migraine suppression at 100mg a day 50mg morning and night which seems to be helping in the interim. Iv gone from 1-2 migraine a week to 2-3 in 5 weeks but iv almost completely lost my appetite and have lost almost 10kg. Neurologist is now away until mod may on leave so has requested my spinal tap and has done all my bloods so should have all my results waiting by the time hes back ready to discuss... its such a lengthy process but atleast something is finally being done :)

melibu

@melibu

Just received my lumbar puncture appointment in the mail, 5th april at 1pm Australian time :/ getting real now

Stumbler

@Stumbler

@melibu , it is getting real, but, hopefully this will finally identify your gremlin. Then, you can focus on how best you can manage this and find a way that you and your MS? can live together, as harmoniously as you can. Best of luck for the 5th.