I firmly believe I have MS in June 2022 I had sudden dizzy spells and tinnitus, it has progressed to numb hands, bowel issues, mood swings, fatigue, nasuea, pain, eye problems, migraines, too much or too little sleep. I could go on and on, I have so many problems, now my brother. I can barely work or do anything now
It has come thick and fast, I have spent nearly all my savings on mri scans and private neuros , MS neuros too and because I have no phyiscal symptoms, (i do but they are subtle) I have rung the Drs, amublance, hosptial anyone. No one is listening and I am so ill I can’t get out the house. My wife thinks I am a joke and being dramatic I also have skin issues, everything keeps peeling on my head. I am tired.
What can I do? Male 38 - in two years I am so ill.
Hello Ryan,
I’m so sorry to read that you are feeling so ill and you really do need answers to help your recovery. I’m sorry I don’t have these, but you need to ask for explanations of the results of your MRI, have you discussed these with your neurologist? Have you had a Lumber puncture? What advice has your GP offered? Have you considered raising the possibility of Long Covid?
It’s so very hard being in your position, but you need to continue to ask the health professionals for help in finding out exactly what is wrong with you and what they can do to ease your symptoms.
I hope you can get answers soon to help ease things.
Mary
Thank you Mary, not long covid. The fact that my brother has issues in lne with MS and a history of AI diseases we are looking at ppms because I am just getting worse. No have not had a lumbar and the neuros won’t do it unless they suspect it. I have often heard PPMSers get a lot worse to diagnosis. I have rung my Dr no less than 40 times. It is just beyond a joke and because I am so tired and so ill. It is hard to get anywhere. Just hopeless.
Could you perhaps share the results of the scans you’ve had and the opinions of the doctors you have consulted?
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I can try, I think my lesions are tiny and that the scanner is too weak. I could do with another neuro I’m just feeling so weak and drained. I can’t get answers.
Does the doctor think your clinical history, physical exam and scan results are suggestive of MS? What is their opinion?
No muscle weakness and no nerve conductivity issues. However I’ve had tiny symptoms for many years and they really started after a colonoscopy. My mum had unexplained symptoms
Now my brother informs me for many years he’s got tingling, pain in his legs etc. But my symptoms are many and I’m losing it. 
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I visited my GP several times in the three years before he referred me to a neurologist. Once diagnosed he couldn’t have been more supportive. However that doesn’t help you.
Can you ask for a second opinion?
Or maybe a referral to an MS specialist. I got the latter but only after diagnosis.
Good luck. Wish I could offer more.
Are you saying you think you’ve all got MS? Or have they got it already and you fear you might have it too? Or maybe I have just misunderstood? In any case. I’m sorry you are having a hard time finding out what (if any) disease process is at work. All I can suggest is that you listen carefully to whatever your doctor is telling you and try to follow their advice. If there’s something serious up, it will show its hand in the end.
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I have MS I don’t need to think I just need to prove it to my neuro?
Why do I think that.
First because my mum had MS symptoms and now my brother does. I have so many cogniton issues it is unreal, choking, spams, behaviour, mood, disinhibiton, fatigue, sleep disorder electric shocks, cog fog, migraines, spasms all in less than six months. Nearly everything you can think of, I have it. I know it is MS. Digging into my family tree there are cases of auto immune. I will bet the rest of my short miserable life at 38 this is ppms. But scans are clear.
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Dear Ryan, it is clear that you are suffering, and I am sorry for it. Please do try to keep an open mind as to what the matter is. A good diagnostician does not decide what the problem is and then try to back fit the symptoms to match his pet theory.
I have had aggressive MS for 25 years and have accumulated a fair amount of disability. For what it’s worth, few of the things I struggle with every day are on your list. I’m not saying that I think you do or do not have MS – I have no idea. My point is that you have no idea either.
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I know, I don’t have MS until they say I do but jeez it is so close to MS and all the weird brain cognition loss I feel. I would bet my life on it. Whatever is left because it is very aggressive.
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Hi Ryan
Tbh i would try and chase your doctors nuro up. and ask why they think it is not Ms … and could it be something else… as you dont have clinical findings from the doctor nuro … this could be something else . I think you need to get to the bottom of your problems. Symptoms… tbh i have weakness upper and lower and all the rest .of your symtoms. but im not yet .ppms and im male 47 it took only a week for my diagnosis as my symptoms. Where serious. And still are . With lesions on spine and brain. has all your tests Mri came back clear ? I hope you get some answers and you need to ask for your results? And an explanation from the nuro … hope you get some answers and i hope you dont have Ms …as it sucks 
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It is MS no doubt I can feel atrophy on my brain and it is severe, why it didn’t show on MRIs? Because they missed it, it is smouldering ms and no real lesions just degeneration. I have had symtpoms for two years and they started very violently to the point I couldn’t ignore it as a trapped nerve etc that so many say they think they have. My PPMS is in my brain, I am sorry to hear you have weakness, I think becausew I went so soon it was not detected. I am due to go to a better MRI and MS Neuro this month. I am really bad I crashed my car for the firs time becuase I blanked out and couldn’t remember I put it in gear and brake on a hill. How long did you have your symtpoms before diagnosis? Of course I could be spms because I had two days of feeling awful that was put down to stress and then it went but then symptoms came back 7x and I knew I was in trouble.
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