MFS & Blood Pressure

    • Claritee
      October 24, 2014 at 4:27 pm

      Diagnosed on 9/25/14 with all the classic symptoms + hbp. Was hospitalized for 10 days most in ICU and put on the five day ivig regimen. Release was delayed due to irratic heart beat and high blood pressure. Very little is written about this symptom and MFS, although some info has been found. More is written about blood pressure under GBS. This was one symptom I had that didn’t seem to correlate to literature, and I had not had it before, being very fit/healthy. Drs have me on blood pressure meds. I have been home now ~ 4 weeks. The vision, gate and numbness in finger tips are improving. The blood pressure continues to be high and irregular…Im wondering if any other MF patients have had this condition too and if the blood pressure eventually went back to normal?

    • Jim-LA
      November 5, 2014 at 8:15 pm

      My BP has improved significantly, but not back to normal.

      MFS, like other peripheral neuropathies, varies in how it affects each of us. I was diagnosed with GBS/CIDP/MFS and still have blood pressure issues since onset in 2008. I measure my BP every morning when I awake while still lying in bed. I find that my BP readings tend to be more representative at this time. I get wider fluctuations during the day sitting and doing work from my wheelchair.

      The biggest change in my blood pressure occurs when I transition between lying and sitting (I can’t stand or walk). This used to make me dizzy because of a large variation in BP. The variation is small these days and I don’t get that light headed feeling anymore, but the BP issue remains. Whether my issue is the direct result of MFS or CIDP I can’t tell and neither can the doctors. I have a great deal of demyelination from my GBS/CIDP/MFS and that has something to do with my BP variations.

      I hope your BP returns to normal soon. Many members have reported significant improvements from MFS after 6 months or so. This is one of those diseases that can take awhile to recover from, especially if there is myelin damage.

      I wish you the best.

      • Claritee
        November 6, 2014 at 3:23 pm

        Thanks Jim. I appreciate your response and am sorry to learn of your ongoing challenges.

        Are you saying that you have been diagonosed with three; MFS, GBS and CIDP? I’m curious as to whether all 3 were diagnosed at the same time, or how did the diagnosis progression occur for you? The reason for the inquiry is that I clearly have MFS, but based on a chronic condition in legs I am also wondering if I have CIDP that has yet to be diagnosed…

      • Robert B
        February 5, 2017 at 1:34 pm

        That is very Interesting. I have also had bp issues since getting out of the hospital and rehab. Nobody has associated it with MFS. It is under control now, but I am on Two different bp meds.

    • Jim-LA
      November 6, 2014 at 7:21 pm

      I started going numb in October 2008 and became paralyzed in 10 days, then I was helped to the ER. The ER diagnosed GBS and I became much worse in their ICU while being treated with IVIg. After I had not started to recover, my GP had me transferred to another hospital that had more experience in dealing with GBS. I was given PE in November and I started feeling better 2 days after (very small improvement, but improvement none the less). The neurologists there diagnosed me with CIDP and MFS in December. It took them about 9 months to put the diseases in remission. It took nearly 5 years for my body to rebuild what damage it could. My upper body came back pretty good, but my legs and feet don’t work.

      I’m out every day I can go shopping or visiting museums, movies, fairs, etc. My power wheelchair fits on buses and subway trains and I can go wherever they can take me. I just got back from Hawaii last week (my 2nd trip to Hawaii in a wheelchair) and this type of travel has its challenges, but I had a great time (Hawaii is mostly ADA compliant).

      I still have some residual MFS symptoms in my face, but I can close my eye now, smile and talk almost normally again.

      Do you have a center of excellence nearby? It might be worth your time to get a 2nd opinion at one. Testing for CIDP usually includes a check of deep tendon reflexes, analysis of nerve conduction velocities, and a cerebrospinal fluid test. Have you had any of these? Is your weakness fairly uniform in both arms and legs? An experienced neurologist will test you to determine if you have CIDP or one of its many variants (MMN, DADS, MADSAM, MFS, LSS, CMT, etc.).

      The current list of centers of excellence can be found here: http://www.gbs-cidp.org/get-support/centers-of-excellence

      • Claritee
        November 6, 2014 at 8:09 pm

        Thank you again Jim. Your story is most helpful for me, but I wince at the challenges you continue to deal with, but honor the grace in your repoire.

        That information is very timely for me, as I am visiting the neurologist tomorrow am, to discuss this very scenario and plan to bring you testament with me.

        I live in S. Dakota, Rapid City…nearest Center of Excellence is apparently the Mayo Clinic in Minnesota…Insurance does not go across state lines. So, hopefully the local neurologist will be capable.

        Yes, I had the spinal tap with high protein and also some reflex tests. I have not had the nerve conduction velocity test. Another reason your post may prove helpful. I’ll keep things informed here.

        Thanks again!
        Bruce

    • Claritee
      December 14, 2014 at 11:11 am

      Im now scheduled for mayo clinic in mid jan ’15. BP seems to have improved somewhat. Sight also, but both at a glacial pace. This past week I accepted a client, first work…went well but was quite exhausted and sore afterward.

Tagged: