jil0217 31/05/17
Last reply 8 months ago
Advice on diagnosis

I wondered if anybody had advice on an MS diagnosis. I am a 29 year old PhD student, and I have been diagnosed with sjogrens and ulcerative colitis with polymyalgia. I do not have the typical ulcertaive colitis in that I have chronic constipation. I also have dermatographism and cholinergic urticaria, with reaction to needles at injection site. I have kind of had the run-around over the last few years. Since I started my PhD (read increased stress) I have been having bouts of dizziness and clumsiness with brain fog, extreme fatigue and pain all over, including these reverberating shocking pains through my hands, like hitting your funny bone, but without actually hitting anything, and in my legs and wrists primarily. These increased in intensity and duration over the last few years, but when I was prescribed plaquenil, the pain has mellowed. I still get very fatigued in the heat. I was a non-competitive distance running, running 12+ miles several times a week, but I have no energy to get out and run anymore. When I would run (and this still happens to me if I overexert myself) my arms and legs would go numb to the point that I couldn’t sense the temperature of the water in my shower (reynaud’s phenomenon). I also drag my toes a lot, and have vision issues when I’m tired (especially driving). Recently I have also found out that some chronic UTI symptoms I have been having are not actually a UTI at all. I have had 4 urinalysis labs since December, all negative, and a cystoscopy which showed nothing, but I have extreme urinary urgency for hours or days at a time. It feels like I have razor blades between my legs, usually with onset in the am, the first time I go. If I can drink 40-60 oz of water before the onset I can sometimes curb it, but rarely, and it usually occurs after my partner and I have been intimate the night before. I have noticed that in these cases I don’t always fully empty my bladder on the first go, and often feel like I have to go when I really don’t. I have tried several things to mitigate these issues, including changing birth control methods many times (I had a copper IUD at the onset of a lot of this), taking a larger dose of probiotics, and opting for less strenuous exercise, but many of my symptoms are continually getting worse.
I have a team of very supportive doctors including a GI specialist, a neurologist, a rheumatologist, an immunologist, a gynocologist, a urologist, and others, but in 2014, when I started noticing the brain fog and balance issues, I had a brain MRI, which turned up negative, and nobody has been interested in MS as a diagnosis since. These doctors have more or less ruled out lyme disease, rhumatoid arthritis, lupus, POTS, endometriosis, interstitial cystitis, and mast cell activation disorder. I also work in tropical forests, so they’ve looked into some tropical diseases, but haven’t really pursued any of them much. I have also had my C reactive protein levels checked many times, but the labs came up negative each time (I have somehow managed to get to the doctor mostly on days when I feel better, so I might just be missing the mark). My mother has MS, manifested in a different way than what I’ve experienced, which is probably why it is on my mind.
I am additionally a bit concerned to pursue a diagnosis because given the intensity of academia and science in general, I feel it could adversely affect my chances of getting a job when I finish (hopefully in the next year). (I have applied to a couple of things to test the waters and the applications actually ask if you have any disabilities, listing MS…). I also am a little worried it’s all in my head. My first primary care doctor here continually cited the stress of a PhD (even when there were clear signs of serious GI problems) and recommended therapy repeatedly, which I would be happy to do if I had the time/energy. I spoke to a psychiatrist at one point about anxiety and counselling but she was reticent to prescribe me anything, and I am honestly reticent to take anything that could complicate my ability to work and process information further than it’s already been. I also discovered that the waiting time for psychological support is between 6 months and a year in a college town, so that was pretty much out too.
I am still leaning toward asking for a spinal MRI in search of a diagnosis, because I’m not too keen on the idea of having a full blown debilitating episode like my mom had when she was diagnosed, in order to tell me what I already suspect.
I know this is not the place to seek a diagnosis, and that MS can be confused with a lot of other conditions, but if anyone has any advice on how to pursue a diagnosis and the usual timeline for the onset of symptoms and visible lesions on an MRI, or how to deal with a preexisting condition in the job market or in academia specifically I would be very appreciative. In the last year, I have gone from ‘just wanting to be able to run again like I used to’ to ‘just wanting a normal day where I don’t feel like I need to stay home in bed or near a bathroom’, and I’d really like to curb that trend.

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stumbler
8 months ago

Hi @jil0217 and welcome.

You’re right, this isn’t the place for a diagnosis, but we normally have a view.

You seem to have been beset by a range of auto-immune conditions, together with a range of symptoms that seem to have been diagnosed in isolation. You’re right, there could be a bigger picture that should be acknowledged.

Having a parent with MS does make you more predisposed to suffer from MS.

I can’t comment about the impact of an MS diagnosis on your academia or job applications. I’m in the UK and we have some legal protection to avoid some of these issues. I believe you’re based in America.

Hopefully, some of our US members can comment on this.

So, yes, it could well be MS. In addition to a spinal MRI :-

Was a contrast agent used in the brain MRI?
Have you had a Lumber Puncture?
Have you seen an MS Specialist?

Sorry I can’t be more helpful.


cameron
8 months ago

Many, many people on this site are ‘back to normality’ once they’re on a treatment regime. Plus, MS research shows that the quicker you get on treatment, the more effective the drug is likely to be. Add to that the widely held belief in MS circles that stress can both create and contribute to symptoms….. so on balance, IMO (and it is just an opinion), I think that getting a spinal MRI + spinal tap as soon as possible, with follow-up by an MS specialist is the way to go. I also think it’s counter-productive to project your future career at this stage of the game. One thing at a time (i.e getting your PhD) has to be your priority. I’ve no idea what disability laws are like in the US, but I imagine that as in the UK, a PhD is well thought of. Whatever path you eventually choose and whatever inconvenient symptoms you may have, you will present as someone with highly developed skills who can work independently. xx


potter
8 months ago

Try to get a appointment with neuro who specializes in MS or there is some MS centers. You didn’t provide any information as to where you are located so it is harder for us to help. I would go for the MRI and spinal with contrast. I didn’t have very severe symptoms but I come from a family full of autoimmune disease. My GP wouldn’t give me a recommendation to see a neuro, I asked for one for 10 years. He finally gave me one because he thought I had nerve damage in my elbow. The neuro read my family history and said he was testing me for MS and the damaged elbow. Elbow wasn’t damaged it was MS that was causing all of the problems. Stress can cause MS to get worse and you seem to be stressing about your degree and running. Are you having problems with bladder infections? I know a few things that can help prevent those. You need to concentrate on school and finding out what is wrong. You can always take up running again, right now your body needs a break. Potter


californiadreamin
8 months ago

Can I ask what you are doing your phd in? Employment laws are pretty clear on not discriminating, but people dont always follow them. Larger companies have to report on their numbers so in some cases it can even be an advantage.

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