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Seeking a Diagnosis

Greetings everyone. I am happy to join this ongoing discussion board, although I have not been diagnosed with MS.

I have been having various symptoms over the last ten years, but I never gave much weight to them because they would come and go and usually at different times, so I would just shrug it all off as fatigue or stress.

This past Summer things have escalated a bit and my usually transitory symptoms have all decided to come out at once and stick around and even bring some friends.

I have no medical training and generally avoid doctor visits unless an absolute emergency happens, but the symptoms I have experienced this Summer are forcing me to reassess my attitude.

From the research I have done, MS is the likely culprit but I could be wrong and would be more than happy to have a doctor tell me I just need to eat better and exercise, or that I am getting old and just need to deal with it.

I thought it might be a good idea to join this forum and hear feedback from experienced people. I would be grateful for any input.

Here are the things I am experiencing. I am going to try and be as objective and concise as I can, but I admit to being a bit panicked about it all:

stammering and stuttering - this has been going on for about 10 years, but it was so infrequent (once a month and just a word or two if that) I just assumed it was me being tired. Now it is happening at least a few times each day. I am talking out loud less because of this (slightly embarrassing) symptom.

constant headaches - this has been happening for the past couple of years and I have explored different things that might cause it: too much coffee, bad posture, tension, not enough exercise, etc. but nothing ever definitive. On some days I will not have a headache, but that is a rare occurrence.
I do not think I am having migraines because I have read that people who experience migraines also have nausea and sensitivity to light...which I have not experienced. It sounds more like tension headaches. I am not sure I understand what a cluster headache is although I have read about them over and over.

In addition to headaches, I have started having occasional stabbing pains in different spots in my head, but those do not last long and are not very frequent.

Also, starting this summer, my head feels like it has a low-level electrical hum to it...pretty much all the time. Wait, no...more like a heated weighted blanket is draped over the top of my head.. it is a difficult thing to describe but it is now my constant companion throughout every day.

Word blanking...also something that has been happening over the years but this summer has become annoyingly frequent. I will be eating breakfast and suddenly cannot think of the name of the fruit I am eating....nothing....the word does not exist in my brain, despite the fact that I have been eating this fruit for years. I think and think but there is just a blank spot where the word should be. I finally ask my teenage son and he tells me it is a papaya. Now I feel stupid.

I am also forgetting things throughout the day that I used to deal with effortlessly. My wife says I am no longer allowed to turn on a faucet and walk away because of how often I have been leaving them on and later discovering a river of water running down the driveway.

Dropping things. I am not sure what is happening here. It is more like fumbling. I have been breaking dishes while doing the washing up but I do not understand how it happens. Once second I will be reaching for a glass and the next it is smashing on the floor.

Combine all of these symptoms together and I am feeling very nervous about the state of things. My initial visit to my regular doctor (who has referred me to a neurologist) was good. He recommended I stop or cut back dramatically on sugar, cheeses, meats, have more vegetables and start exercising regularly...which I have been doing.

From the various discussion forums I have been combing through, it sounds like heat and stress can greatly agitate these symptoms, so I have gone back to swimming as my main source of exercise until the weather cools down a bit.
I will say that the diet change and exercise, although it has just been a few weeks, has improved any feelings of fatigue and brightened my attitude quite a bit.

I have been keeping my wife informed of all of these things and she has been supportive and helpful with keeping my stress levels low...which is wonderful because it takes a single brief argument to send me to headache-land for the rest of the day.

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So, that is where I am at. In mid-October I have an appointment with a neurologist (that was the soonest they could see me). I am trying to keep some perspective, but it is very tempting to think of all the worst case scenarios.

Does any of this sound familiar? Any suggestions about sources of information? What sort of questions/information should I have prepared for my neurologist?

Thanks for reading!

  1. Hi . Welcome to the MS community! I am so glad you found us, especially considering all that you are going through. The diagnostic process for MS can take a while and that can make it even more overwhelming. It is in our nature to want answers now, but it takes time to schedule tests and get results. The best thing you can do now is to educate yourself about MS, but also step away from it all for a while. Keep yourself as busy as possible so you have no time to think about it. That will help pass the time. The symptoms you mention are commonly associated with MS, but they could also be attributed to one of the many health conditions that mimic MS. Here is an article that lists them: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. Your primary care doctor should have ruled some of these other health conditions out already, but the neurologist might want to run more tests as well. That can add to the wait. Here is an article about the diagnostic process for MS that might interest you: https://multiplesclerosis.net/diagnosis. It might be helpful if you bring a journal of your symptoms to your first appointment or at least some notes about them. Nerves can quickly take over and make you forget what you meant to say or ask. I hope it's not MS, but if it is, know that many, many people live very full and productive lives with MS. Every MS journey is different, so you would do well to tune out those who try to tell you about their aunt or their cousin or their best friend's best friend. Yours might never get much worse. Regardless, we are here for you. I hope this all helps. Best of all wishes! - Lori (Team Member)


    1. Thank you for the informative response. I especially appreciate the two linked articles.
      I will follow your advice all-around and report back after seeing the neurologist.

      1. Did you ever get a diagnosis? Your symptoms sound all too familiar to me. 😬 I had an abnormal MRI a few weeks ago and will see a neurologist early August. Did your symptoms lead to an MS diagnosis or something else? Be well!

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