Open

Back again.

I would love to be able to be more positive, to say that things have improved in the last month or so but unfortunately, that is far from accurate. I have never felt more hurt, more desperate or more despondent. I feel physically shattered. I am mentally drained.

I guess this is one of the reasons I have started using this blog in the hope that, at some point, I will find a therapeutic value within this and that there may be someone, somewhere out there reading these posts that can help or advise me. I am going to try and keep this post ‘physical’ and try and explain a little bit more about the physical symptoms and difficulties I touched on in my last post.

I find it really difficult, however, to talk about my feelings, my symptoms, how I feel in my body and how I feel in my ‘head’, partly because I have got to the point where I cannot even explain it myself. I never seem to make any progress, medically. I question myself. I question the validity of my own symptoms as no one ever seems to take me seriously. Is this mess my own fault because I can’t explain how I feel?

From the outside, however, I look great. I look like I’m coping. I know I do, the doctors have told me so. The same doctors who have let me down so greatly, in so many ways, over the course of the last eighteen months.

A month ago, I wrote a letter to my local health board detailing my recent problems after seeking independent advice :

“12 May 2015 22:17

Dear Sir/Madam,

I am hoping you may be able to help, advise or put me in contact with someone who could assist me in ongoing issues surrounding my current level of medical care.

I am twenty five years old, from Inverness and have had MS for just over ten years. My MS, I feel, was relatively ‘settled’ up until about a year and a half ago. I was able to manage this and also my mental health through distance running, which I started in 2011 which also led me into the world of fundraising for MS Society Scotland and, to date; I have raised almost £34,000.

Since November 2013, my health has deteriorated and the level of care and attention I have received from my GP and several medical professionals has been poor and upsetting. I would struggle to fit all the examples I have from the previous year and a half into this email but I will just give you a few examples from recent months.

I have visited my GP at least once a month since November 2013 and I genuinely feel I have got nowhere in that time. My main symptoms I have been discussing are back/hip/testicular pain/sciatic pain and also a dead, tight, heavy feeling in my legs. The main ‘advice’ I have been given from my GP is for me to take anti-depressants, which were prescribed in July. I declined to take this form of treatment as I felt that there was far more going on than just an issue with my mood. However, I did finally ‘give in’ and take this medication as I felt like I had no option. I have been on this medication with no positive affect but my GP is already discussing my next anti-depressant, completely ignoring my physical ailments. Furthermore, while at an appointment last year my GP told me, and I quote: “You’re looking to find anything that is wrong with you to take your mind off having MS”. I was flabbergasted by this comment and remained silent.

In addition to this, I was seen by a urologist at my local hospital and had two operations (one in 2013 and one in 2014) to attempt to correct a urological problem. Both of these operations were unsuccessful and, after seeing him again, he examined me and gave me my pre-operation assessment in the view of having another operation. Alongside this, I was also experiencing testicular pain (which I still do to this day) but I was told that ‘sometimes people get these aches and pains’. I spoke to my GP as I was concerned about the pain and also how my urologist was not investigating. A few weeks later, I found out that my GP had written to my urologist telling him I was having ‘second thoughts’ about the operation. This was not true as my concerns were in respect of the lack of investigation regarding the testicular pain.

A few months later I was at my GP again and after telling him my symptoms he suggested there was an issue with my prostate. I was given no examination and instead he told me he would write to my urologist and tell him. It turns out that this letter was never written by my GP and, also, my urologist has chosen to discharge me with these symptoms and underlying problems unresolved.

Recently, my GP has suggested that my health issues are MS related whereas; in general, the messages coming from medical professionals at the hospital (including neurologists, MS nurses and others) is these are not MS related. Three weeks ago I was at my six monthly review appointment with my neurologist and my MS nurse. My neurologist asked me how I was feeling to which I told him I felt physically and mentally awful. I told him my worst symptom at that particular moment was a numb, dead, tight, heavy feeling throughout the whole of my legs, which has been like that for 90% of the past year. My neurologist replied “You do know that isn’t necessarily MS related don’t you?” The next bit baffled me. He said, “It can’t be MS related you’re on Tysabri…” (N.B – I have been on the drug ‘Tysabri’ for five years). This confused me considerably. Usually when I’m in for appointment I find it difficult to ‘think on my feet’ and know how to respond but his comment astonished me. I know that Tysabri is not a ‘cure’ and is only used in the hope that it will slow down the progression of the disease. The conclusion of the appointment was no MRI scan needed.

After the appointment, it occurred to me that I don’t ever recall having an MRI of the spinal cord. I have seen the images from my scan of the brain but never my spinal cord. I spoke to my MS nurse and asked her if I’ve had a spinal cord MRI who replied with “I’d imagine so”. However, I have since found out that in almost eleven years of having MS I have never had this as, apparently I “have never shown symptoms of having any MS lesions” in my spine. Obviously, I hope there are none but I have now got to the stage where I would like this to be investigated and to hopefully put an end to all these mixed messages.

In addition to this, I also went to my GP about a skin problem and I was told the problem was ‘completely normal’. A few weeks later, I returned to see a different doctor who diagnosed me with a skin condition and gave me prescription medication. After using this medication for the advised four weeks, and having made no difference to the problem, I returned to see my doctor who refused to examine me as I am “looking to find anything that’s wrong with (me) to take (my) mind off having MS”. I referred myself to see someone in my local hospital to try and make some progress who confirmed a diagnosis completely different to one I had been given and had been treating myself for. After returning to my GP with an accurate diagnosis and asking for a referral to dermatology I was refused. As it stands, I have no idea what my next steps should be.

I have been desperately unhappy for a year or so now as a result of my decline in physical health and inability to have regular exercise. The only thing message I get from my GP is a need for anti-depressants no matter what my symptoms are. There is no doubt that depression is correct but I do feel this stems, in a significant part, from unanswered questions/a lack of progress medically. I feel abandoned by the medical profession and I feel so alone.

I am continually going to my GP (at least once a month for the last eighteen months) with physical symptoms but I am ‘fobbed off’ and, as I mentioned before, having to leave with some hurtful comments hanging over me. At the suggestion of my GP, in recent visits I have taken a ‘body template’ with me, which I have printed out, and drawn/written on showing my symptoms in various places. However, they have not acted upon this. This has not helped me, as my mental health seems their sole focus.

Last week, I emailed this ‘body template’ to my MS nurse as I knew that not all my discussions with the GP would reach the hospital. Her reply to this was that “most symptoms except the testicular pain is MS related”. Two weeks ago, at my appointment with her and my neurologist, was, as I mentioned previously, not MS related.

I have undertaken a lot of research and I am aware that other people, on the same treatment as me (Tysabri) in Glasgow receive an MRI scan every 6-12 months (my last scan, of my head only, was in March 2014). This begs the question as to why the same condition is treated and investigated so differently within the same country?

I genuinely feel I am going round in circles particularly as I am getting such mixed messages from the various health professionals. To summarise, my GP is not properly considering my physical symptoms and is suggesting they are part and parcel of having MS but nevertheless, is keen to provide anti-depressants to mask my physical symptoms. My neurologist is suggesting that because I am taking Tysabri, my symptoms are not MS related.

I am so unhappy and distressed with what is going on. My condition has, in my opinion, not been properly assessed; the range of treatment options not properly explored and I am not being appropriately supported. I appreciate this is probably not your ‘responsibility’ or you may not be able to advise but if you have any suggestions I would welcome them.

Thank you in advance for any suggestions you may be able to offer.

Yours faithfully,

Stuart Rose”

Since that letter I have finally received an MRI scan and has made things even more complicated. It was revealed to me (in a letter) that I have a ‘slipped’ (herniated) disk in my lumbar spine (L5/S1). After contacting a doctor at the hospital I was advised to see a local chiropractor (privately, of course) of who she recommended. During my first appointment with the chiropractor he suggested I pay for a pelvic x-ray as, while examining my back, he noticed I am more ‘muscularly developed’ on the right side of my spine compared to my left and wanted to identify the cause. I went ahead and pursued the x-ray which revealed a ‘small hemi-pelvis’ – meaning the right side of my pelvis is smaller than my left and as a result, sits lower, and not in line with my left side. Furthermore, the x-ray showed there is scoliosis of my spine, which has obviously been distorted to try and accommodate this. In addition to this, on examination, the chiropractor also indentified that I have ‘piriformis syndrome’ which, coupled with the herniated disk, could also be a factor in my sciatic pain that I have been experiencing for over twelve months.

In terms of the skin condition, I have made no further progress with regards to a referral to dermatology from my GP. As a result, I have felt no other choice than to go and make an appointment privately with a dermatologist in Dundee who I will travel to see shortly in the hope that he can help me in some way. I am prepared that any treatment will be at a cost but I feel I have been left with no choice.

Another factor that may be contributing in some way to my physical and mental turmoil is due to being diagnosed with hypogonadism (low testosterone). This has been low for at least two years but I has taken until recently to be referred to endocrinology (the ‘hormone department’ at the hospital). I have now been given a trial of testosterone replacement therapy to try and boost my testosterone in the hope this may help with some of my health complaints. Before beginning my TRT my level was 11.0 (the normal range, I understand, should be between 12.0 – 32.0) and for a twenty-five year old male I would imagine should be between the top end of the range. Since being on testosterone medication for four weeks my testostorone has somehow fallen to 3.2 – around about the equivilant amount of a woman. More confusion, more questions, more despair.



In terms of MS, I have been told the MRI scan showed I have no lesions in my spinal cord so I have been assured my symptoms in my legs are not MS related. I genuinely have no idea what is going on but I cannot explain the debilitating feeling in my legs everyday – an aching, ‘dead’, heavy, tight pressure from above my knees to my toes almost as if I am wearing compression socks. The has been the case since around about April 2014. As extreme as this sounds, the best way I can describe it at its worst is that it feels like my legs are going to explode. The chiropractor is unsure of the cause of this, my GP still insists its MS and my neurologist and MS nurse insist it isn’t MS. Round and round in circles and never progressing in any direction.

To reiterate, the reason I am being so open is that I hope I may just find someone who may have some advice with regards to any of the factors contributing to my current poor health.

I could go on but I am struggling to find enough words to explain all this.

Until next time…


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5 thoughts on “Open”

  1. This breaks my heart Stuart.
    I really hate to hear that you are going thru all of this. It’s extremely discouraging since you’ve been so open and detailed with your doctors with no real answers. I hate when they tell me “Not everything you are feeling is MS Related”, but then they have no idea what it is. I’m praying you get the answers you need. If you ever need to talk, message me on Twitter.
    Your friend from the U.S.
    Camille

    Liked by 1 person

  2. Stu. My Dad is going through exactly what you are. Exactly. Sorry for my language but I am so fucking angry for you. My Dad is nearly 70. I can kind of see why they can’t ‘be bothered’ with him. Totally not right but we know that’s how the NHS operate. You are 10 years younger than me. This is not right. You should be a priority. Without a doubt. My Dad was diagnosed at 30. Told he would be wheelchair bound at 40 and bed ridden at 50. He played football against my team on his 50th. Please keep fighting mate. Please keep believing in yourself and do not believe those idiots when they say its just this or its just that. You know best! Have you had your b12 levels checked? That can also have an impact. Very significant really. Please if there is anything I can do to raise awareness/carry on fighting your battle let me know. I feel for you big time mate. Big time! X

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  3. Oh my, What a nightmare you have been living. The one thing I can tell you for sure is your neurologist should be doing MRI’s every six months with Tysabri. Also they need to test your blood to see what your level of PML risk is at. I also know that low testosterone causes fatigue & mood issues.
    I also have MS. Have had it for many years. The trip to a diagnosis was long and arduous. I saw my first neurologist at 17 because I was losing my balance. He took one look at me & said “must be an inner ear infection or virus…At 28, I ended up in Emergency with trigeminal neuralgia. Again I saw a neurologist who gave me pain medicine, but never did any test &never told me he suspected MS. Fast forward 17 years, I was 45 when the electric shocks in my body were over taking me. I went to my gyn as I had had another immune problem & he & I had a great mutual respect for each other. So, He sent me immediately to a neurologist. When I arrived at the office, it was the same neurologist that I had met at 28. He did an MRI. Innumerable lesions on my brain. I am now 59. Please write me on face book private message if you need to “talk”. My name is Michelle Audrey Drolet.

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  4. I too have heavy legs,finally thr ms nurse explained my lesions are at c3 and at the base is my skull so I am going to progress more quickly in mobility and that the location of the lesions accounts for my complaints….make sure you get a good idea where your lesions are located..I also developed more back pain cause I sit so much,I too have slight scoliosis and pelvic compensation for the spasms in my legs, we are going with seated exercises and eval for both in legs rather than increasing other melds which can aggravate bladder control and swallowing….good luck hope you get no more ms surprises

    Liked by 1 person

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