Recent MS diagnosis, what if I'm right about everything else?

[WorryIsMyMiddleName]

After two years of trying to convince doctors that something was amiss, and effectively being labelled a hypochondriac - "medically unexplained symptoms" was what the neurologist wrote on my notes... Until my brain scan results came back - I was recently diagnosed with Multiple Sclerosis. I've had so many relapses over the past 18 months, and my MRI shows numerous lesions, so I've immediately qualified for the disease modifying drugs to try and slow the rate of the disease.

Anyway, my point is that if I was right about this, then might it be possible I'm right about my other symptoms being something of significance? Even with glaringly obvious - textbook, even - signs and symptoms of MS, I was passed from pillar to post and frequently dismissed as neurotic or anxious. Even with a strong family history of MS, Lupus, Scleroderma and other auto-immune conditions, doctors used my family history against me, saying that it was only fuelling my anxieties. But when all was said and done, my suspicions were confirmed.

My experience has caused me to further question the judgement of the medical professionals, and I find myself doubting them when they dismiss my concerns. Whilst the MS can explain a lot of my symptoms (walking and swallowing difficulties, vision problems, numbness and tingling etc), it cannot explain all of them, and I have several other symptoms which cause me great distress, in terms of anxiety.

For example, for over a year now I have had an enlarged gland (hard and fixed) that visibly pokes out of my neck, and another behind my ear, both of which appeared the same time my throat problems began. More recently, I had a swollen gland in the armpit (same side as the other swollen glands), and although it went down, it left a tender cord running through my armpit. I have had a slight cough for the past few months, no explanation for that. I have problems with lumpy breasts and cysts, and also ovarian cysts which cause fairly significant pelvic pain, but I never know when a cyst is the cause of my discomfort, or when it might be something more. I have suspected Interstitial Cystitis - the list goes on. I am waiting on several referrals and tests, but all this waiting and worrying is doing me no good. My life has become and endless cycle of hospital appointments, anxieties and fears.

My current cause for concern is an itchy, weeping, crusting left nipple. I fist noticed it a few weeks ago, treated it with ointments, and it eventually went away so I thought no more of it. Until it returned. I decided to Google the symptoms, purely to find out if there was another cream I could try, only to discover that Paget's disease of the nipple (an uncommon type of breast cancer) could cause the very same symtoms, was often misdiagnosed as eczema, and tends to come and go in the early stages, making it seem that it is responding to the topical ointments. I saw my GP and she wasn't concerned, and said that it wouldn't come and go if it was anything serious. However, after reading many personal accounts of Paget's, I know that the nipple symptoms can come and go, and that eczema on one nipple (especially when you don't suffer with it anywhere else), is extremely uncommon. Further heightening my fear and anxiety is the fact that I have already been diagnosed with cysts and a dilated duct in the same breast, so now I'm putting 2 and 2 together, and possibly (hopefully!) coming up with 5!

Sorry for the rambling post, but do you think I'm being unreasonable to worry about these other symptoms when the doctors don't seem too concerned? I mean, what are the chances of being diagnosed with MS and cancer within the space of a few months?! I'm aware that I suffer with health anxiety, and it's torn my life apart over the past two or three years, to the point that my family are fed up, my marriage is falling apart, and I cannot enjoy my little boy and beloved dog. On the other hand, my symptoms are very real, and when you are concerned about cancer, you know that time is everything.

[AlexandriaUK]

Anything that causes you to be frightened and anxious should be taken seriously by your Dr and if they don't deal with it to your satisfaction then I would see another Dr in the practise, I'm sorry to hear your recent diagnosis of ms but do not be too scared the meds they have now are a major breakthrough compared to 5 years ago so ms is well controlled nowadays.
You saying you also have concerns regarding your breast, I presume you have a discharge is it coloured and has your Dr examined it.

[WorryIsMyMiddleName]

Thanks for replying. I actually think that my GP does a good job, it is some of the consultants who have been a little slow and not taken my concerns seriously. I think the problem with my GP is that I have presented so many different problems to her over the past couple of years, that it is difficult for her to know which to refer and which to deal with herself. They have limited resources and seem to have to at least made an attempt to rectify the problem at the surgery before they make a consultant referral. Which of course makes the wait even longer, and I feel that I am wasting precious time. When I have a problem that is really worrying me, I want an immediate referral and a definite yes/no answer. That, of course, doesn't happen.

Regarding the nipple problem, the weeping and crusting is from a small crack around the nipple, rather than a discharge from the nipple itself. The GP did take a look but there wasn't much to see (crustiness washes off in the shower). She recommended trying an antibiotic and steroid ointment for a few days, and if the problem returns again then I need to go back to see her.

The irony of the situation is that my MS doesn't overly concern me, as my health anxieties are focused on cancer - something which I may or may not have!! People can't understand how I've taken my diagnosis so well, but then they don't understand health anxiety. It is neither rational nor logical...

[swanick15]

I've been on this forum now for about 4 months and I think your the first person to actually have suspected MS and been diagnosed with it, the fact that you were able to push and push the doctors into testing you is amazing and if you truly think a second opinion is what you need hen I say fight for it, its what we pay our taxes for.

[Serenity1990]

Firstly I'm really sorry to hear about your diagnosis. :hugs:

I'd really recommend have a look on the OMS Forum (http://www.overcomingmultiplesclerosis.org/Community/Forum/). A neurologist in the sixties started treating it with diet, and in the nearly half century he was practicing he managed to halt or reverse disease progress in around 95% of patients. The OMS forum is linked to the website of a doctor (now professor) who was diagnosed with RRMS, read about this diet and devoted his life to researching and advocating its effectiveness; by the way he's been totally symptom free for fifteen years. The forum full of really positive people, and there are some truly amazing success stories. One woman after following the diet for a few years got her several decade old PPMS diagnosis reversed recently as she no longer has any lesions on her brain or spinal chord; iirc beforehand she had seven.

The only reason I know about this is because my nan was diagnosed in the sixties. Before the days of internet forums there was a strong MS community in her area of the world, and some of the people from that community made the trip across to the US to be treated by the aforementioned doctor. All three of them lived very normal lives, two of them died of old age and the other I saw walking as normal as everyone else in the post office last week.

[WorryIsMyMiddleName]

Hi Aaron - although I suspected MS, it was still cancer that I worried about. And that hasn't changed since my diagnosis! I do a lot of reading and researching so I know that my fears aren't entirely irrational. And knowing that I was right and the doctors were wrong on that occasion, now makes me worry even more about the cause of my other symptoms.

---------- Post added at 18:39 ---------- Previous post was at 18:34 ----------

Thanks for your reply, Serenity. I shall take a look at the forum. Since my diagnosis, I've read much about the link between diet and auto-immune, and as a family we have gone Paleo - having been inspired by Dr Terry Wahls' Tedx talk called 'Minding Your Mitochondria'. I am now following an autoimmune Paleo approach, as well as giving the drugs a try, so will see how it all goes.

[Junot]

Sorry to hear, but at least you finally got to the truth. I may be crucified for saying this or be accused for instigating anxiety on someone else but, yes, a lot of doctors tend to overlook our symptoms when we have diagnosed anxiety, panic or depression. They take us for hypochondriac neurotics and they tend very lightly to dismiss our symptoms as anxiety-related. I've told about a dry cough to my GP last time I had an appointment with him and he didn't even bother to move his butt from his chair to auscultate my lungs... He told me straightforwardly that this is a tic due to anxiety and has no clinical significance to him. There it is. The only doctor that seems to take me seriously is my cardiologist (I say "my" because even though I have no heart condition, I often see him to reassure me over my chest/heart symptoms). And as a matter of fact this cardiologist was the first and only doctor to refer me for urine microalbumin test. Unfortunately, all the other doctors seem to think I'm mad and act like cold machines with no sense of empathy whose only thing they know to do well is to strictly follow medical guidelines. Many seem to forget that guidelines don't make anyone a doctor. They're just standardized, peer-reviewed references and a doctor should know when to deviate from them and refer a patient for a given exam or specialist. This to say that if your GP or consultant(s) don't take you seriously as they should, if you're an educated person and you highly suspect that something's wrong with your body, don't quit and keep searching for a second, third or even fouth opinion and to get the right tests done. If they happen to came back fine so much the better, at least you'll feel reassured.

[WorryIsMyMiddleName]

Hi Junot. I totally agree with you that doctors tend to overlook or dismiss our symptoms once they get an inkling that we are anxious. I haven't been diagnosed with anxiety but it was evident that some of the doctors thought I was being a neurotic time-waster. I would be the first to admit that I'm anxious about my health, but I'm certain that it was the worrying about unexplained symptoms that gave rise to my health anxiety! It frightens me how they just dismiss symptoms because a person is anxious or depressed.

How long have you had your cough? I've had mine for about four months. It's more like a tickle deep in my chest than a cough, and it's very intermittent. Did the urine test show anything?

[Junot]

How long have you had your cough? I've had mine for about four months. It's more like a tickle deep in my chest than a cough, and it's very intermittent. Did the urine test show anything?

About 1 month and sometimes I feel a tickle in my throat. In the next appointment I'll "force" my GP to auscultate and refer me at least for chest x-ray. The urine test showed that my kidneys are leaking more protein (albumin) than they should. According to the latest research, microalbuminuria is a sign of very early stage kidney disease and a predictor of cardiovascular risk. Looking forward to hear what the cardiologist has to say about this result.

[WorryIsMyMiddleName]

If you really feel that something isn't right, then keep pushing. I suppose we are just numbers in a system to the doctors. I hope you get a positive outcome with the cardiologist. I had a clear chest x-ray, but this persistent cough/tickly chest still bothers me.