no referral!

[pjay140]

My PA just called and said she was sorry for stating the possibility of MS, but that she doesn't believe we need to go there (neuro) yet. "MS is a diagnosis of exclusion so we need to talk more about your symptoms". My labs came back normal, according to her, as did my thyroid. I have mild atrophy of the brain, due to MRI last month, terrible cramping of toes on both feet and blurry vision, which started about 6 months ago, along with the buzzing of my legs.

[HVAC]

I am sorry. Sounds frustrating. I find with any medical problem I sometimes have to be pushy if I do not think I am getting a satisfactory answer. Did she say what other tests she would do? In the diagnosis of MS there is often 6 month follow ups seeing if things change I clearly had all the makings of MS according to a half a dozen Neurologists from the get go but I had to endure all the tests and 6 month follow ups for two years before diagnosis.

Alex

[pjay140]

I asked my PA what else we would talk about if I wasn't going to be seeing a neuro. She had no specifics, only that we would go over my symptoms (again) and eliminate other diagnoses. I don't know why it's such a big deal, other than my level of insurance(state).

[figuerpa]

I think you should push the issue. Let your PA run the tests she deems necessary the more testing you have done before you see a neuro the better it is when you do finally see one. Get copies of all the test results that she does run so that when you do finally get referred you have it all to show the neuro.

I feel your pain and frustration with her not referring you, sometimes you really have to push to get what you want. It is a very long process so the more your PA does will be less the neuro will have to do.

You should ask her what all she is planning on testing for. Hopefully she will start  rigorous testing that will hopefully get you going in the right direction with a diagnosis.

Wishing you luck,
Paula

[supermum_ms]

The thing that struck me about your post was the lack of other things the doc was going to get you tested for, is there anything? Dx of exclusion is right but that doesn't negate the criteria for a dx of MS. The clinical evidence should already minimise the number of alternate dx or MS mimics, i dont actually see the necessity to test for mimics that your clinical evidence doesnt match, they should already be excluded.

So what about the clinical neurological evidence of brain atophy, did you get given any possible alternate causes or even an explanation of what exactly that means in relation to your sx? I'm also left wondering if the atrophy is from lesions or not, if it is then wouldn't MS be even more likely? For me this alone generates many q's and the first thing i'd be doing is getting my hands on the scans and reports.

This "MS is a diagnosis of exclusion so we need to talk more about your symptoms" could simply be the docs way of making sure he/she's connecting all the dots or even another way of saying lets hold off on a dx and wait for more clinical evidence of what it is or isnt. I wouldn't really have a huge problem with this statement if it was coming from a MS specialist or even a neurologist but I do see a huge problem when a neurological issue is identified through testing (atrophy) and its a general practisioner making that statement!

I really think you need to get your hands on the reports, and a referal to a neurologist.

Cheers...........JJ

[pjay140]

Dear JJ
Your post has certainly verified my own misgivings about my own DX and my Dr.s wish to further verify all that is going on with me. I have the MRI in my hands and all that is said is that it is "mild age-related brain atrophy". My Dr. followed up with a call regarding the results and said it is nothing to worry about, just age-related. What does THAT mean? I will make a new appt tomorrow and push the issue about the referral. I have a feeling that I may have to get a new Dr. with the insurance that comes with my new job in 90 days.

[supermum_ms]

LOL i sneaked a peak at your age, now if you were in your 70's i'd say its not unrealistic or quite probably age related but at 50 it doesn't sound right to me. As we get older 65+, lesions and shrinkage is not unusual so age related would not be an unusual finding, though i would expect if your younger it would NOT be classed as age related.

In truth it may not be anything of significance but I think that is yet to be determined. OK i think you may need to take a step back for a minute, why did you have an MRI? IF it was to look for signs of MS then the type of MRI is important, if MS protocol was used or not, what was the MRI looking for?

There has to be more to the report than the conclusion of "mild age-related brain atrophy" it should mention what the MRI was looking for, type of MRI used, specific areas investigated and if any normal or abnormal findings turned up, before they can draw any conclusion to the atrophy being age related. eg 9 x T2 lesions in white matter etc Is there anything else in the report or is that all you've got?

Still thinking of stepping back, the cramping, tingling or buzzing of both legs may in fact not be central nervous system but peripheral nervous system which isn't MS. There are a few causes for PN issues but apart from your brain MRI did you get a full spinal MRI? Blurred vision can be totally normal after you hit your 40's, but the health of your eyes needs to be evaluated by at the least an optomitrist but preferably an opthalmologist, has that been done to determine if its correctable with glasses or if its something more?

Before you change dr's or push for a referal to see a neurologist, i think you need to think about and probably work out the answers to these questions. Probably the most important would be how age related atrophy has been determined?

Cheers.......JJ

  

[pjay140]

I so appreciate the time you are taking with me JJ! All of your comments and questions make sense and give me a lot to think about and investigate. The purpose for the MRI was to determine the cause of headaches in the back of my head and severe neck pain(compressed discs). My Dr ordered this also because I have a history of breast cancer and pre-ovarian cancer. I had a hysterectomy to stop the spread . She was looking for a tumor and wanting to rule out cancer. I did not get a full spinal MRI. I have had eye test that revealed that there were suspicions of glaucoma, which has been about 9 months. All of this is hard for me due my increasing depression. It's hard to keep making appts or requests.
I am trying to find a Christian counselor who can help me.

[supermum_ms]

Holy molley you've been put through the wringer and still you managed to make it out the other side!!

Ok now you really do need to take a step back, take some time to breath. How MS even hit the radar in the first place is beyond imagination, that statement your doc made is actually making more sense, now.

You have a medical history of cancer, so looking for a tumor was logical though probably has scared the pants off you. I did come across a medical research project regarding cancer and the acquired medical issues directly associated with cancer treatments. From memory I do recall it mentioning cognitive issues, migraine and something regarding peripheral neuropathy but exact details i'm sorry i cant remember much of it. I mention it because it could be relivant to whats now happening to you.

I'll have alook for you tomorrow, its midnight here in OZ so its too late to go hunting. At this stage i dont think MS is in your diagnostic picture, but some things you need to handle before others so I really think you must address the depression before anything else, please dont let that go on too long.

Hugs........JJ    

[supermum_ms]

http://www.cancercenter.com/newsletters/july_2008_newsletter.cfm

I went looking for the research paper and couldn't find it, but did find this which i thought was really easy to read and quite informative. You may like to google 'cancer and peripheral neuropathy' there is a lot about this on the net, it seems to be a rather common sx after cancer treatments. I'm still looking for anything related to the atrophy and what you've been through, it may take a while but i will try.

Hugs......JJ

[rendean]

Hi, we haven't met before so welcome to the forum!

JJ has provided  you with lots of  correct and informative information. I would followup on the MS issue if it bothers you but given your age and medical history I would suspect JJ is on target.

Whatever the outcome , I wish you only the best!!!!

Ren

[twopack]

My sister is presently on chemo for metastatic breast cancer.  She was having a lot of neuropathic pain in her feet.  She found out from sharing on a forum that ice packs or cold foot baths during treatments would help.  I know she's used cold applications at home too and got a lot of relief.  Don't know if it would help you at this point but it might be worth trying.

Adding my best wishes for total recovery of body and spirit.
Mary

[pjay140]

Good morning! It's 5:30 here in Portland, OR and I'm so glad I checked in and saw many wonderful and helpful comments. Thank you all for taking the time. I have been having some struggles with my PA over this "whole thing". Monday I went to see her to talk about my latest symptom of cold right hand and feet. The first thing she asked was, "so are you still going down this road of MS"? Mind you, she was the one who through this out during a previous appt. She was very rude and defensive when I asked her to consult with my Dr but not to dismiss me as some crazy breast cancer survivor who "is always looking for something." (those were her words from another appt.) I will NOT be seeing her EVER AGAIN! I believe I have found a counselor whom I feel confident will walk with me during my healing. I am just now after 41 yrs facing the affects of child abuse from a stranger when I was 9. Bless you all for your kindness and caring.
Patti