Where to turn?

[Fostermommy55]

I am 55 and have been sick the last ten months. I think I have MS with autonomic dysfunction. After seeing six doctors, I have a diagnosis of POTS and probably autoimmune disorder. I have seen two neurologists, one a MS specialist at UCSF. They said I am too old to have MS and not a typical presentation. I went on a Palio type diet last November and am somewhat better but plagued by fatigue, heat intolerance, red stiff toes, hypotension, temperature disregulation(I am always cold), sleep disturbance, etc. Is there any viable treatments? Help for the horrible fatigue?

[Fostermommy55]

Had an MRI within a couple weeks of getting sick last summer. No other tests except blood work which was all normal. I was basically housebound for months with really bad orthostatic hypotension. I'm told the red toes are caused by the same autonomic problems causing the blood pressure problems. They can also cause other problems including temperature dysregulation. So frustrated with disjointed medical care in Northern California. Cardiologists that don't talk to neurologists etc. thinking of going to the Mayo Clinic or Cleveland Clinic where they coordinate which doctors you should see and which tests. I have little clue to what I'm doing and want a professional to do it.

[Fostermommy55]

Head of ms clinic at a very prestigious medical school said I was too old for MS. Had me rolling my eyes too!
From what I can research on line, my red toes are consistent with autonomic nervous system dysregulation. Supposedly upwards of 48 percent of people with MS also have some kind of autonomic problems. I had very bad orthostatic hypotension until I went on an autoimmune diet.
Right now I've seen seven doctors with no diagnosis except POTS, which I think was wrong. Not all dysautomonia is POTS but it is the diagnosis in vogue right now.
Pretty frustrating experience. Ready to go to the Mayo Clinic and have them sort it out.

[Fostermommy55]

Thanks for your reply. The doctor I saw yesterday seemed to think my fatigue was a sign of depression. I asked if my neuropathy, balance problems, heat intolerance,etc were also signs of depression. So frustrating. He didn't have a clue so of course the symptoms can't be real.
I think I have MS, which is under control with a dairy and sat fat free diet, but I also think I have a autonomic nervous system problem which is causing most of my current problems.
I had an MRI last August a few weeks into feeling sick. I've been told it was probably too soon to show anything. No follow one or other tests except blood.

[kwarendorf]

Hi FM-

I live in confirmation of the ignorance of the "too Old" doctors. I was diagnosed @51. It may or may not be related to my MS, but I do have orthostatic hypotension. I don;t think there are any meds for it.

There are many causes for both POTS and orthostatic hypotension. Fatigue and heat intolerance are very familiar to those of us with MS. I'm not so sure about red stiff toes, hypotension and temperature dis-regulation.

Have you had the "standard" MS MRI, LP and blood work?

Kyle

[Lulu54]

Let me add my eye rolling here .....  too old?  Jeez.  Which doctor was dumb enought to say that?  Answer - One who hasn't read the literature that MS can present at any age even though there is a typical age range.  There often isn't anything typical about MS.  Immisco gave you the perfect answer - I was diagnosed at 54, but probably ignored symptoms for years.

POTS can seen as a comorbidity to an autoimmune disease - having two disease processes at one time - but not always.  The red stiff toes is not something you would see with MS .Have you been checked for Rheumatoid arthritis, Sjogrens, Sarcodoisis, Lupus?  Or the other autoimmune disorders?

Please discuss this further with your doctor and feel free to talk about it here, as well.  Perhaps with all the brainstorming we tend to do, we might hit upon something useful.  I'm sorry you are left searching for answers- that is incredibly frustrating.
Laura

[immisceo]

While it doesn't sound like MS would be at the top of things they'd be looking for, the classic 'too old for MS' will get a lot of eye rolls around here! Yes, there is an age group that is statistically most likely for diagnosis (20-40) but that certainly doesn't mean MS isn't diagnosed at later or indeed earlier ages.

If I'm not mistaken, I think we may have forum members who were diagnosed later than the typical age. And of course, the age of diagnosis may have little or no relation to the age of MS onset. Plenty of us shrugged off issues for years, not connecting the dots.

Having other diagnosed conditions also muddies the water for some doctors. It can complicate their hunt for what's causing you trouble. Did you have an MRI?

As for treatment for fatigue, many people here have been prescribed modafinil (brand name: Provigil), but your doctors may want to rule out certain potential causes for your fatigue before pursuing that as a treatment.

It certainly sounds like you have a lot going on. I hope you are able to have a conversation with your physicians about helping to improve your quality of life, even if a specific additional diagnosis isn't forthcoming.